THANK YOU to everyone who is helping answer questions in the comments. I'm eternally grateful to them.
**Please look at the comments on this post! There is some invaluable information that is being shared about Neridronate & other things that have helped CRPS. I know our bodies are all different and what works for some many not work for others. But please feel free to comment if you have found anything that you feel helped or hurt. Thank you all!
Update: I am using a 4 medication treatment that has been helping but have not gotten the Neridronate myself. If you would like to know about my current medications, feel free to follow along HERE and comment.
(I get no monies from this blog nor anything else I post about. I'm just a 37 year old woman who was diagnosed with CRPS type 1 three years ago after several knee surgeries)
Please know: This post use to contain a lot of information. I was messaged by that third party to delete that information.
You can find out how to get the infusions by looking at the comments.
Thanks!
**Please look at the comments on this post! There is some invaluable information that is being shared about Neridronate & other things that have helped CRPS. I know our bodies are all different and what works for some many not work for others. But please feel free to comment if you have found anything that you feel helped or hurt. Thank you all!
Update: I am using a 4 medication treatment that has been helping but have not gotten the Neridronate myself. If you would like to know about my current medications, feel free to follow along HERE and comment.
(I get no monies from this blog nor anything else I post about. I'm just a 37 year old woman who was diagnosed with CRPS type 1 three years ago after several knee surgeries)
Please know: This post use to contain a lot of information. I was messaged by that third party to delete that information.
You can find out how to get the infusions by looking at the comments.
Thanks!
My wife has RSD CPRS II and was just speaking with 'Duke' at the third party you discussed. I am going to research the cost of going to Verona and scheduling the treatments directly with the hospital. they third party requires half down when you send in all the records you mentioned. the research I have found also asserts that relief is achieved even with CRPS II patients that have had it for many years (6 years for my wife. Thanks for having this blog. I will stay in touch. God be with those in pain...Den and Kar
ReplyDeleteHi Den & Kar!
ReplyDeleteI'm so sorry about your wife. It is an awful disease. I would love to know what you come up with. I was really hoping to speak with the author of the book I mentioned but after 3 separate emails asking him to set up a Skype appointment (which I was going to pay for), he hasn't written back. He also sets up the appointments and I believe it is around $6,000 without flights.
PLEASE keep in touch? I would love to know more about this fairly new treatment.
Thanks! Mellissa
Just finished catching up on your latest postings, lots of information to consider in regards to treatments, even harder when the people that can help you don't get back to you!! Disappointing but I hope you get some answers soon and that it is a viable solution for you. Wouldn't that be wonderful! Gorgeous pictures of Fred, Instantly made me smile :) Kind Regards Kirsten (Tyty)
ReplyDeleteThank you so much for this page. I have had CRPS I for six years and had read about the Neridronate infusions a year ago. I emailed Dr. Adami who kindly emailed me back and suggested a three-phase bone scan to determine if I had any bone edema, as that would result in a better outcome. When I told him how long I had had CRPS he was rather discouraging saying the longer a patient has it the less likely a good result but that if I decided to come he would try and keep the cost down. I decided to wait and continue with the therapy I was receiving here. But now that the Nridronate trials are wrapping up next month I'm trying to find out how long we have to wait for Neridronate to be available here. Do you have any idea? I don't buy that it's going to take 10 years. That may just be a selling factor this company is using. BTW, I did speak with a rep. from CRPS Treatment (the third party) today and that $11,000 to $13,000 doesn't include air fare. That seems like a pretty huge profit margin. The rep. also said that the doctors at the Verona hospital were very picky about treating CRPS patients and require the bone scan whereas other European hospitals are not. His company is trying to get involved with those hospitals, as well.
ReplyDeleteOne more thing: In researching the US study I saw that they were treating with only 250mg of Neridronate while in Italy they treat with 400mg. Wondering why and if that means they will be conducting more studies.
I have heard that Neridronate could take 5-10 years to get in the US. There are some pretty major concerns about it including jaw necrosis. I realize that this may happen more often in oral Neridronate but I have hard of it happening in the infusions as well.
DeleteI don't know the answer to the 250mg vs 400 mg. I do know that I had Ketamine and many doctors are doing low dose vs. high dose. Because Neridronate isn't FDA approved, I'm not sure they are monitoring the doses.
Hi , my name is Lisa and i have had R.S.D. for 9 years. But i am hearing this nouridronic trial in Tampa Fl. Is doing 100% medicine! But i am afraid i have one tooth in the back has the root showing worries me! I take care of my teeth very well! But I am afraid they are not going to do allow me to do the trial. The nurse told me I would have to wait three months for the trial after I get my tooth pulled or fixed and they don't know if the trial will be around in 3 months? So if there is anyone else in our states that someone knows about somewhere they may stil be doing the trial? I could of got the spinal stimulater? But I have had very bad experience with the ketamine treatment that didn't work! I had 18 infusions last year. It was the hardest thing I have ever done!! It put me in nervous breakdown mode and I will never ever do that again!! I am so afraid to let him do the spinal stimulater on me! Please can anyone tell me if they have had the nouridronic acid trial done and it worked even though you have had it 9 or more years. And got emence relief?? Or if anyone knows how long you have to do the nouridronic acid in Italy thank you!! I would say thank you more then you know! But we all know wiTh R.S.D. WE KNOW!!
DeleteI also had a terrible experience with ketamine that left me with anxiety and panic attacks. I'm so sorry to hear you also had a bad experience!
DeleteI also had very bad effects from Ketamine Concoction - I am going to be starting Nouridronic trial here in Ohio in next few weeks. Study is in Parma Heights OH phone 440-234-5700 hope this helps Fern Kolarik
DeletePraying it goes well for you Fern!!!
DeleteI have an e-mail from Chris and he paid $1400 for treatment. He did not reply what year he had it done.
ReplyDeleteThanks! I spoke with him and updated my blog post. He did have it done but doesn't feel like it helped 100%. It doesn't claim to on those who have had the disease over 4-6 months though. And if you have had the disease 4-6 months, there are so many other things to try. Or at least the US doctors are trying (spinal stim, Calmare, Ketamine, lumbar injections, etc).
DeleteTHANK YOU for your comment!
Hi
DeleteMelissa. My name is Siggi, i live in iceland and i first experienced crps in september 2004. Every few years it has progressed from my feet, to my legs and then in 2011 it got to my hands. Last night i had an episode where my feet frome toe to ankle and my hands from fingertips to little above my wrists became hypersensitive and bright red and felt hundred times more painfulthan before. This crash started at about 8 pm and lasted until 5 am this morning. My fingers still feel very sore and overall sensitive skin. I am wondering due to other development in my body, if high buildup of collagen in my body could have triggered this first in my toes? I felt start of peyronies about 6 months befor cprs kicked in. Has anyone here peyronies or duprityens with crps? I did drink a lot of processed milk when young, something that docyors today can be dangerous. This might have started the overbuildup of collagen? Then the raisin. The 6-9 months before my initial attack of crps i did drink 4-6 liters per day of pepsi max. I recentle found out that max sweetener is Aspartam, 18.6% of 100 ml is aspartam. 10% of aspartam is pure methanol and no methylene to counter it out. Here is a article that i am hoping sime might connect to.
https://www.google.is/amp/s/www.thesun.co.uk/living/3380005/diet-coke-pepsi-max-aspartame-caffeine/amp/
The article is interesting. I am pretty in tune with my body at this point and I can tell when I eat or drink something "new" in it. So I'm sure you are the same way. I will be interested to see if anyone has any info on this though. I'm sorry you also experience CRPS Siggi!
DeleteChris mentioned that the treatment affect lasted about a year. He did not do it again for fear of Osteonecrosis of the Jaw. If you do not know what that is you should do some serious homework before considering this treatment. Know the risks.
ReplyDeleteThis is very disheartening. I had not read anywhere that the benefits lasted only about a year. I would be willing to be treated with this powerful drug for results that lasted indefinitely, but hold with Chris that the longterm risks would not be worth doing this on a yearly basis. It's terrible to have one's hope taken away. That must be why initially the Italian study only accepted women who had had CRPS four months or less. At four months your chances of full remission are very great.
DeleteI agree with you both! For $11,000-$13,000 (as the third party is charging) and the side effects, I would think it would last longer than a year. I'm so glad you commented! Please update if you hear anything else.
DeleteI'm going to try the four medications that Chris mentions in his book under "Poly Pharamacy 2.0". My doctor here in FL agreed that I could try them if I got off pain meds, which I have done. I will update my blog soon with these medications and if I feel they are helping.
Wow!! You got off your pain meds? I do not have it myself. My wife does and she wants off her pain meds too. She tried it last April with no success. I pray for everyone who has CRPS! I watch first hand what a horrible disease this is. God bless and I'm grateful for your blog!! =)
DeleteHi, I just saw your comment. Yes, I have been off pain meds for two months now. I needed to be off of them for my current treatment. I just posted an update so please feel free to read my post in November & December. They are working for me.
DeleteI am SO very truly sorry that your wife has CRPS. It is such a terrible thing. Nerve pain is a nightmare. Please keep us updated if you find anything that works.
I have just recently been diagnosed with crps 1. It's moving up to my knee. I want to try and get to Italy! It's been three months. I'm scared to death and have missed so much work. Dang it can't we get relief here in US. I don't have the $ to go. Thanks for writing this blog. Is there a way to not go through a third party? Sorry to all of you in pain. This is unbearable. If I can't get relief I'm afraid I'll give up. I want to work again.
ReplyDeleteThis comment has been removed by the author.
DeleteDp you know how i could get funding to go to italy to do the nouridronic acid? Please and thank you
DeleteI don't believe there is funding to go to Italy. People are paying out of their own pocket. However, there is a trial here in the US right now.
DeleteI have had crps 1 for 7 months and it has spread all the way up my leg. I can't work and it's been sou severe at times that I use a wheelchair for a lot of tasks. I'm going to Bologna Italy in 6 days. You do not need that third party. That is a complete rip off. We saved our money to go. Roundtrip ticket 800 each, a flat 60.00 a night and treatment 1000 euro. That does not come anywhere close to 11000. I am praying that it works. I'm sorry that there are so many in pain. Also, I will meet their dr and an American dr before I start the infusions. The dr that I have conversing with Malavot. She was a part of a double blind placebo study retorted by the Oxford journal. I wish everyone the best.
DeleteThere is an open study using the same treatment as in Italy at the Clinical Trials of Charleston in North Charleston, SC for free.
DeleteUnknown are you renting a car or taking a taxi to the hospital? I would recommend a car service if you're not renting a car. It was only $3 more & you could reserve it for the trip to & from. I believe there is only one but I can find the name of the one we used if you'd like. Make sure they take you to Padglione 2. It looks like the back of the hospital where ambulances go. Go thru the double doors until it dead ends then turn right & you'll see some lockers. Turn left & walk till it dead ends & turn right & watch for a hallway to your left that has a row of chairs against the back wall. Turn left into that hallway & left at the chairs. That's where you check in. Also always bring your passport - sometimes they ask for it sometimes they don't. Actually finding where we needed to go was the hardest part. I hope it works as good for you as it has for me! Take care & let me know if there is any questions I can help you with!
DeleteBill I am her husband. Thank you for the information, actually I oush her 2 miles in a wheelchair there and 2 miles back! It's a good workout after eating all this pizza and also very entertaining weaving in and out of people/cars/bicycles!
DeleteHi Neil my name is Persis and my daughter Tanya is 24 and suffering from CRPS 1 since 2015. She had it in her knee/ankle at first, doctors here on New Zealand could not do anything, so I took her to India my home town where they gave her a nerve block and I got her home walking. After exactly a year she got a relapse and this time in her neck and shoulders. I got to know of Meditaly whilst I was browsing the net for some cure for my daughter, got in touch and they quoted US$15000. They wanted half the money at first but since a couple of weeks I got no correspondence from them at all, just last night I stumbled upon this block and I recognised your name from the crps treatment fb group. Please can you give me some info on what you have done and how you went about it? Would be highly obliged for any help I can get. Thank you so much
DeleteHi Persis and Tanya! Welcome! I'm so sorry Tanya also has CRPS. I actually did not get the Neridronate but only because my currents medications are working. However, there are a lot of people in these comments that have gotten the infusions or are scheduled to get them. There is currently a free trial in the USA for the Neridronate infusions and everyone gets the medication. I've heard great things about it.
DeleteYes, the 3rd party company charges quite a bit. But I have heard of people going to Italy by themselves and having success and the cost is about 1/3 of what that company is asking.
I have a blog post about my current medications that I posted in November. I believe it is titled "Poly Pharmacy 2.0". I know our bodies are all different though and what works for one may not work for another. I've had CRPS for about 3.5 years and have been having a lot less pain in the last six months or so.
You sound like an incredible mother. Tanya is blessed to have you while she struggles through this!
Hi Melissa,
ReplyDeleteI was diagnosed in June so time is important. Have been in contact with Troy. Gave him 50% down, got all the tests done & uploaded to drop box. Now I'm having a hard time contacting him. I called from a different number Tuesday & he called back but was very vague. Saying his colleague took the CDs to Verona but wasn't sure if he was talking to my Dr. or another Dr. I've also emailed him twice since then but no response. I've also contacted medical tourism of Italy and contacted an interpreter service. I'm calling the hospital directly Monday to see if they have anyone who speaks English.
Thanks so much for this blog!
Any update Bill? Have you heard from Troy or anyone over there?
DeleteTroy, read my message down below.
DeleteI contacted Dr. Maltova and was in Italy within 3 weeks. NO money down, made my payments directly to the hospital $1000EU.
Feel free to contact me if you want more info
Thank you again Marty! Your information here is invaluable to so many of us!
DeleteThat's great Marty!! Thanks for the post!! Very encouraging!! Can't wait to hear about the whole experience!!
DeleteI had the treatment in Bologna, Italy with Dr. Maltova. 4 infusions over a 10 day period, beginning Sept 2016. I am 47 days out from the last infusion.
ReplyDeleteI have CRPS in most of the right side of my body. I am pleased to say my pain is down 50%+/-, especially my evening pain which had gotten dipilitating.
In the USA I had tried nearly every treatment available except Ketamine.
The cost for Dr. Maltova's services was a total of $1100. We rented an Airbnb for 15 days for $2000, which we rented at the last moment.
There was another American in the treatment with me, and she has also seen significant improvement.
I am glad to share any information needed for anyone who might be interested.
All in all, I would highly recommend Bologna and this treatment.
Thank you SO much Marty! I truly appreciate your posting your experience and the cost. What a fantastic thing for you to have less pain!
DeleteI would very much like to email with Marty, Carrie, and Penny about their trips/experiences. I have a sister who is needs this treatment. She lives in Texas. How would I go about communicating with them?
DeleteMarty I know its been a few months. I've recently been diagnosed with CRPS and have been looking into this a little bit. I have some relatives over in Italy that I might be able to stay with (depending on how long they themselves are there). Can you give us an update on how yo are feeling now? Is there any way I can contact you and get more information on your visit?
DeleteMelissa I just found your site, and am sooo beyond grateful for it and the information you've shared.
We are currently in Italy and she had the first infusion yesterday. We organised the whole trip independently and will probably have spent around $5000 for the two of us by the time we leave. Either my wife or I will update you soon and help as much as we can.
DeleteHi Neil,
DeleteI hope things went well in Italy and your wife got some relief from the treatment. It's a horrible disease that can rob you of your life. I know because I have it too. I was planning a trip to Italy using a third party and it was going to be $15,000 US not counting air fare. How did you figure out how to plan everything in terms of getting s hold of the right doctor and facility including things like where to stay and transportation. If its possible to send me some information I would be forever in your debt. My email address is gstopher9999@gmail.com God Bless You and I pray your wife finds some peace amid the fire that is CRPS.
Marty Corn. Hello. Can you please tell me how you got started on your trip to Dr Maltova. The email address provided in one blog came back to me. I am desperate and the MTI plus airfares and extras will cost me nearly AU$30000. My sister said I should start doing it myself but don't even know the name of the hospital. Can you help.
Deletealso my email address if allowed is patrdon@bigpond.net.au and I am the anonymous above. Thank you
DeleteHi Marty. How do I get in touch with Dr. Maltova?
ReplyDeleteThanks in advance!
I got her name through Dr. Jim Moberly who is headed up the trial here for Gruenthal..which I did, and got the placebo. So I reached out after researching her, she is a fabulous doctor. I would be glad to share her contact info. if you want, or answer any questions you might have.
ReplyDeleteShe was part of the original study in Italy 4.5 years ago when It first came out with Dr. Abadi in Verona.
I read your comment wrong.
ReplyDeleteHere is her clinicians email.. I did most everything through him. He speaks some English, but uses google translate often. Same with Dr. Maltova, though she speaks more English.
Gaetano.dioguardi@aosp.bo.it
Tell him that Martha Corn from Calif gave you his contact info. I was there the end of september for 10 days.
Dr. Nazzarena Malavolta
ReplyDeleteNazzarena.malavolta@aosp.bo.it
Hi Marty, thank you very much for all the info and contact for Dr. Malavolta. I just emailed them. I also live in California, where in Cali do you live? I was just diagnosed with CRPSI and I trying to get recommendations for doctors, physical therapists, etc. Thanks!
DeleteThank you so much!! I emailed her & the clinician responded!!
ReplyDeleteThey are extremely prompt! We were so excited every time we opened our email and had mail from gaetano! The one thing I would recommend would be to take a translator. We survived but that would be the only thing I would have done a little different!
DeleteThat pleases me. They treated us so, so well while we were there. I was fortunate, we had someone from Italy that was able to write out my concerns etc in Italian and then translate back to me. That was very, very helpful.
ReplyDeleteAnything else I would be glad to help.
My husband and I are from Indiana and went over the same time as Marty and her husband. The hospital put us in touch and we started emailing before our trip. It was comforting knowing I wouldn't be doing this alone!!! I had given information to another couple and they arrived a week after we did. It was a site to have all three wives sitting there during our treatments! The hospital and staff were hands down AMAZING! The treatment was rough but the results so far well outweigh the side effects. We had an awesome adventure and made life long friends! Prayers and comfort to anyone with this horrible pain disorder!! Wayne and Carrie Bennett
DeleteWe're scheduled for January 4th! Thanks so much to all y'all!
ReplyDeleteAwesome!!! Please let us/me know how it goes! What a blessing to be able to have hope again I'm sure!
DeleteI have done Scrambler Therapy twice and it has shown very positive results. No side effects and its covered by some insurance plans. Just don't use the Calmare company, they don't use the correct protocol and they have been shady in how they obtained the machines. I would suggest Dr. Ed Boese who has the Pain Care Clinic of Idaho. He's board certified...and you won't find a nicer doctor. Best of all...Scrambler Therapy REALLY WORKS. So it's a good supplement or alternative for people who've had CRPS for a long time. My symptoms have not zeroed out (probably due to using ketamine treatments in the past), so the neridronate might be worth a try for me because I'd like to have a baby soon. I'm just about at 12 months of pain. I would love to have an actual cure!
ReplyDeleteI have had CRPS for 14 years. I've tried most treatments available that might work because I have been completely laid up for the last 3 years due to the pain. The 7 day in-patient ketamine infusion worked, but I fell 9 days later and my pain came back. For a few days, I realized I forgot what it was like to be pain free! Note to anyone looking into that treatment...make sure you have someone who is familiar with your particular CRPS circumstances. You need to have someone stay with you in the ICU. I have no memory of the last 3 days I was there so it's important that somebody is knowledgable, careful, and make sure the nurses are careful with your affected area(s). Plus you need someone to be totally committed to taking care of you the following 2 weeks. The Ketamine completely wipes out every ounce of energy and strength from you (at least it did me)! You need to have someone who can lift u into your wheelchair and onto the toilet. You def lose your dignity! Even if you think you're ok to get up or do things for yourself, I'd say DON'T!!! That's why i fell. I didn't want to wake my sister in the middle of the night again to go to the bathroom. Oh how I wish I would have now.
ReplyDeleteI was in the clinical trial with Neridronic acid in May 2015. I believe I got the placebo in all 4 treatments as I did not get any relief. There is a new study starting soon, BUT it is only open to those of us who were in the first one and did not get relief. I'm praying I qualify and get relief this time! When the studies are done, and if it is approved, this drug is supposedly going to be fast-tracked which means it should be on the market in 2-3 years, not the usual 10 for many drugs. This is done for diseases like CRPS that have no cure and no treatments that are 100% successful. Praying for everyone out there suffering with this. I know some cases are mild, but it is progressive and some of us suffer 24/7, especially unbearably at night and most of you probably know what I mean. Let's pray for a cure, but at least for an effective treatment!
Thank you Denise for your comment and all your suggestions!
DeleteI am sorry you have CRPS. Truly.
Yes, people have been helped with Ketamine. There is high dose & low dose Ketamine in the US. I didn't do well with the high dose (that is an understatement) but I have heard of many people being helped by it! I know our bodies are all different. I just blogged tonight about my new treatment so feel free to read that. It is four medications they are using in Germany. Again, I know we are all different and what works for me may not work for some. Nerve pain is hard to map, especially when you have it in different parts of your body.
That stinks that you didn't get the Neridronic acid in the clinical trial.
I will be thinking of you and praying for you and everyone with CRPS and nerve pain. Hopefully the near future brings about new treatments and cures!
God Bless all of you that are suffering this horrendous disease. I have had RSDS/CRPS for over 6 years. I asked my Pain specialist to use low dose naltrexone but he said he wanted to try opiods first. Oh God how I wished I had told him no. I have gone through Norco, Suboxone (Made me homicidal), Nucynta (Dissosiative dissorder, wanted to stab myself cause did not beleive my body was my own), then to the morphine. My pain doc just dropped me from his services cause I complained that I couold not reach him when he made a mistake in my pain meds. I am going through withdrawals right now have been completely off meds for 3 days now. Must admit this is the absolute worst thing that could ever happen to anyone. Bad enough having the pain but then to be suffering complete acute withdrawal symptoms (nausea, diarrhea, stomach cramps, restlessness, insomnia, complete body aches but could just be the CRPS, depresssion, anxiety, sadness that is unbelievable all at once.) If it were not for my complete and absolute belief in Jesus Christ i would probably be dead by now. I must admit that 3 days out I do feel some better but must stay strong. Wishing to try the low dose naltrexone does anyone have any help there? God bless you all!!!
ReplyDeleteThat is awful! You should have never been made to withdraw so quickly! Your doctor was wrong.
DeleteI withdrew from Fetanyl patches about two years ago (you can do a search for it) and it was about two weeks of craziness. Withdrawing from narcotics and opiods quickly should NEVER happen. I agree - the thoughts were something I would never have thought myself capable of. I continue to struggle with dissociative identity disorder (which is left over from Ketamine 11 months ago) and see a therapist 2x a month. I didn't realize that these things were possible but the brain is a strange and sometimes terrible thing.
I'm glad to hear that you are on the other side of those withdrawals!
I just posted my thoughts about 4 medications that I have been using and have also been used in Germany. I blogged about it in November and then again tonight. They have been helping me. I have tried LDN before by itself and it didn't seem to help.
You know pain since you have had CRPS for over 6 years. Please know my heart goes out to you. I will be praying that 2017 brings about a break from pain and moments of true joy.
My mom just stumbled across this blog and showed it to me. I'm so thankful that I found this.. I've had CRPS for about 9 years. I've been on low dose naltrexone for about 16 months (since September 2015.) I have not had any pain relief:(. However, I have found that changes in diet have helped me the most-I've gotten about a 15-20% relief from cutting out dairy, bread, sugar and gluten. I'm so happy to see that people have gone over to Italy and have gotten pain relief from the neridronate infusions. This gives me hope.
DeleteKristen
There is another Neridronate trial starting in the US January 2017. This time it is an open label trial (=every body gets the drug) and they use the same protocol as in Italy (100 mg x 4 over 10 days). I have asked one of the trial researchers for the official contact information, if anybody is interested.
ReplyDeleteTHANK YOU Laban! This is great news! Please, please keep us updated!
DeleteHello Melissa, could u please give me this info for this trial in January u were talking about where everyone gets the neridronate and no placebo? My email is msolutions360@gmail.com Thank u :)
DeleteHello! I am a study coordinator with Clinical Trials of South Carolina. We are actually doing this study right now here in Charleston, SC. You or anyone else that is interested can call our recruitment line from 8am to 5pm Monday through Thursday at 843-789-3707 to learn more. It is open label (meaning no placebo) as the OP stated before.
DeleteI was all set to go to Italy & 15000.00 I called this number. I am waiting on labs to qualify & I hope to start the neridronate infusions on March 21,2017. And they will pay me $75.00 a visit for 11 visits. I'm super excited and super thankful for this blog.
DeleteI have not heard back from the trial researcher yet, but this is one of the research centers that are doing the trial: http://www.ocresearchcenter.com/ (you should be able to call them and ask how to register for the Neridronate trial)
ReplyDeleteHere is the official link to the trial: https://clinicaltrials.gov/ct2/show/NCT02972359?term=Complex+Regional+Pain+Syndrome&rank=24
ReplyDeleteTHANK YOU!
DeleteHi y'all,
ReplyDeleteToday we are going for the first treatment. We had the consultation yesterday with Dr. Malatova. It consists of going over your medical history, MRIs & a physical exam.
We had a mishap with the taxi driver - he dropped us off at the wrong part of the hospital. I just showed people the email that Gaetano sent & they would direct us in the right location. We got close & Gaetano saw us & yelled Penny! (I've been signed in under my husbands name & just never bothered to change it.) :)
It's been a little scary traveling so far away but I wouldn't change a thing. I feel so comfortable & confident with both of them.
I also like the fact they do the infusion in 2 hours instead of one. I like they give you a couple days between infusions. She did explain the side effects of flu like symptoms.
I'll try to update again before my next infusion on Monday. Take care y'all!
Thank you for letting us know Bill! I'm hoping the treatment works! Yes, please let us know :)
DeleteHi Penny (Bill), thank you for the update. I have been watching your post carefully. I'm so happy to hear how brave you are in traveling across the world and that it's been positive so far. Italians are wonderful people :) I really hope you find relief from your pain. All the information I have found about biphosphonates has been positive. I'm greatly considering the neridronate treatment because I'm frantic that my pain is possibly spreading. If possible, can you answer a few questions.... I have a family friend that is from Italy and he is going to help me reach out to Dr. Rossini in Verona , but we would also like to contact Dr. Maltova in Bologna. Do you have a phone number for her office? My hope is to pay directly to the hospital or provider. Are you working with the hospital directly....or did you use the third party medical tourism company? How much is the cost? Also, would you mind telling me your age? I am 37, diagnosed for 12 months and from Atlanta, GA. I'm still hoping to have children some day....I'm wondering about the risks of this medication long term on childbearing, so I'm curious if you have this concern as well. Also, can you tell us about your scans, were they MRI and what was the conclusion? I really hope this treatment is successful!!! I look forward to your updates. Ciao :)
DeleteCheck out the open trials in North Charleston SC. It is not a placebo study. It is the same treatment you will receive in Italy.
DeleteHello Melissa and everyone... just fyi.. I found the trial in the US and I have emailed with the pharmaceutical company to confirm there is not a placebo - everyone gets the medication. Here they said == Thank you very much for having contacted Grünenthal and for your interest in our current ongoing clinical trial with neridronate for the treatment of pain associated with CRPS. Via the study specific portal www.studyCRPSnow.com you will find more info and also be able to get in touch with participating physicians/hospitals. Kind regards, Grünenthal GmbH, Trial Information Desk.== But, when I called the number on the website, the automatic message says this trial is not accepting applicants. I asked Grunenthal if they could verify this is true? They said no "There has been an issue with the website, through which you received this message. The recruitment for the mentioned trials is still open." I looked up the locations and Googled the one in my state and contacted them directly. It is open and about to start in 2 weeks!! I pray to God that I am eligible. I have been trying to share all this info with my family and husband so they can help me decide... it's a lot to consider. Im having a hard time dealing with the fact that this disease is life long... and its already robbed me of my life so far. Maybe, this info can help some of you :) I have listed some links that I think have helped me consider this treatment and discuss it with my family.
ReplyDeletehelpful to learn about CRPS and to share with family:
http://rsdguide.com/stages-crps-classifying-stages/
This is the study done in Italy. The last 3 paragraphs in this article are what helped me understand "Why?" (right before the acknowledgments). But the whole report should be read:
http://rheumatology.oxfordjournals.org/content/52/3/534.long
Treatments for CRPS including info on biphosphonates:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4832403/
How Biphosphonates work:
https://www.ncbi.nlm.nih.gov/pubmed/24959990
The current clinical trial:
https://clinicaltrials.gov/ct2/show/record/NCT02972359?term=NCT02972359&rank=1
Jaw bone crumbling is a real risk if you have periodontal disease:
http://www.rdhmag.com/articles/print/volume-26/issue-10/feature/what-the-dental-professional-must-know-about-bisphosphonate-medications.html
I don't have a number but her assistant Gaetano returns emails pretty quickly. As Carrie said earlier it's amazing how much joy you feel when you see his name in your inbox. I paid directly to the hospital. The first time was the consultation & it was around $180. The subsequent infusions have been $200 each paid to the hospital with visa.
ReplyDeleteI used a 3rd party before I found this blog. Yay Melissa! They haven't contacted me after paying 50% down. But I used PayPal & have it in writing that if they can't get me in then they'll give me a complete refund.
I'm 48 & was diagnosed last September & I have 2 grown girls & a 1 yr old grandson.
I have it in my left & right hands & wrists. I fell on my left wrist in May & was put in cast then heard a pop in my right wrist later when I picked up my grandson.
I had the left wrist MRI first (had met my deductible so I went thru the insurance) & it just showed mild arthritis. Then the pain got to a point that I cut all my hair off because I couldn't brush my hair. Went to a different specialist, he did an MRI, emg, nerve test & blood test to rule out RA & other diseases. When they all came back normal except for a little bone edema on my right wrist he diagnosed CRPS & referred me to a pain management company for a nerve block.
Then my husband found the treatment in Italy.
Going to the third treatment in about an hour.
The first one I brought in the prescriptions I was taking & my passport (was supposed to bring them for the consultation but I must have missed that) You just sit in a chair in your own clothes & Gaetano gives you an IV in the elbow vein (hate the ones in the hand) & you sit there for about 2 hours. it took a couple of hours after we got back to the hotel when I started feeling a little off. I was running a low grade fever, achy & my blood pressure & pulse was raising. My Dr. Had given me a prescription for the pain pill Norco so I took one of them & an extra blood pressure pill then slept thru the night. The next day (Friday) I felt OK & we went out & walked a bit. Friday night & Saturday was painful but I just rested & kept up with the pain pills. Sunday I was feeling fine.
Pretty much the same thing with last Monday's treatment. Tuesday night was the worse but they said it usually eases up after the third.
The best way to reach me right now is my husband's email. Billunderscoremcac@yahoo.com
I forgot to say thank you before :) I hope you are doing wonderful and pain free!
DeleteThat's _ between bill & mcac. I've been told to be careful putting our email out there because of crawlers or something like that
ReplyDeleteMelissa and all, I found your blog Monday. Such great information. I have never blogged before. I know this is valuable information and need to share it.
ReplyDeleteI've contacted Bologna. They got back to me the next morning. They said to have blood work done & then hopefully come on. I contacted the 3rd party person. He called immediately. $15,000 for housing & treatment. Needs my doctor's records & blood work. Come in about 2 weeks.
I have researched USA clinical trials. As best as I remember all these are 4 doses of 100mg Neridronate and are all recruiting.
Advanced Clinical Research in West Jordan, UT is starting in near future.
Pioneer Research Solution, Houston, TX starting in February
Florida Medical Pain Management, St. Petersburg starting in near future
North Star Medical Research, Middleburg Heights, OH Recruiting
Clinical Trials of South Carolina, Charleston Recruiting
Call or email. They have all been great. Praying that I will get in one. Keep the FAITH.
Thank you for all the great information Dixie! It is great that people are commenting and helping others.
DeleteYes, the 3rd party is expensive. There are other ways to go, as shown in these comments, that are much cheaper.
I've been having success taking the four meds I mention on my other blog posts. I'm so so thankful to be having less pain and get out more!
Take care!
Where in West Jordan UT I live in that Valley and would love to know the clinic or office doing the trials?
DeleteI am now 3 months out and had my spinal cord stimulator removed! I still feel improvement all the time but there are definitely days I slide back due to winter! Besides the side effect, I would do it all again! We loved gaetano and dr malavolta!
ReplyDeleteAwesome Carrie! I'm glad they were able to take it out because of your improvements. Truly a wonderful thing!
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ReplyDeletei was able to set up my treatment, airfair, and B&B all for less than $5,000. Why is the cost with your company so high? Thanks.
DeleteI used google translate to show Gaetano Carries's last comment on my last infusion.
ReplyDeleteHe was so happy! He has a phone that he speaks into & it transfers into English. He said it is his colleague :)
He wanted me to say "Tell Carrie & Martha that Gaetano salutes you"
We're home now. I don't have any of the burning, sweating & heat in my hands. I'm down from 5 pain pills a day to 2.
If anyone has any questions pls contact me. I'd be more than happy to help.
Melissa I'm so glad the new medicines are working for you! Have you been able to go see a movie yet? I read in one of your other posts that was something you were hoping for.
Y'all take care!
Hi! How have you been feeling?
DeleteNope, no movie yet. But I am sitting longer. I can now sit for over 10 minutes almost pain free. We are getting there :)
I was able to vacuum about two weeks ago which was another item I wanted to do SO badly. It was awesome. Ha.
How AWESOME! The relief is indescribable isn't it! Gaetano emailed me just the other day and asked how I was! I truly owe them my life. I still have bad days but nothing compared to before! I'm looking forward to seeing my end results this coming October! Please keep us posted on your journey!!!!
DeleteHow long have you had crps before getting the treatment?
DeleteHi Bill. How long did you have crps before you got the treatment? How are you feeling now?
DeleteI started having the symptoms in June, diagnosed in September. I contacted Dr. Malavolta the end of November & was scheduled January 4.
DeleteI feel great! I can't remember the last time I took a pain pill! Every day I'm doing things that I couldn't do before like opening car doors, opening drinks, turning door knobs - little things you don't think of until you can't do them.
Hope you are doing well, Melissa. Found your blog when researching Italy and neridronate. My daughter is 19 and has CRPs , so hoping this/ something else works for you and her. I too cant find much feedback from folks who have had this treatment.
ReplyDeleteI agree. It was hard to find people that had Neridronate! If you read through the comments on this post, there have been people that have had it and posted. There is a trial in the US that will be happening and I think they are still looking for people. Again, the website is in the comments.
DeleteI have had some success with a bunch of new meds & a very strict diet.
I am sorry about your daughter. 19! What an awful thing to happen to a teenager. I couldn't even imagine dealing with it at that age. I hope she finds relief very, very soon!
For anyone looking for the treatment in Bologna, Italy, please get in contact with Dr. Nazzarena Malavolta
DeleteNazzarena.malavolta@aosp.bo.it
Several of us have had Treatment and we are willing to share our experiences and any helpful hints to make this easier!
Melissa/Carrie, thanks so much for response. Have any of you folks who have had improvement had CRPS longer than 2 years? We are thinking seriously about this treatment
DeleteMelissa, I am so delighted to hear your mix of medications is giving some improvement!! So pleased for you :)
I've had it 2 years and I believe the other ladies that were there with me have had it at least 4-5 years.
DeleteIf you are serious about the treatment please let me know and I'll give you my email address and help you with the process! I just got word that a second person I've been helping is going in March! I'll help anyone get the info they need to make a difference without feeling like they can't afford it! No one should be charged that much money!
DeleteThank you, that would be much appreciated
DeleteBennettfamily510@frontier.com
DeletePlease shoot me an email. My husband and I are working on putting together a power point and info packet of what we did and my treatment! Remember, everyone is individualized and this is to help people feel more confident. I wish I had a "helping hand" with my process but we had no issues and a great experience!
Hi Carrie, I just found this blog and have contacted the case manager in Bologna. I am serious about looking into this treatment. I contacted the MTI place and arranged a phone call with them and I never heard from them and they later told me that they had too many inquiries that day and couldn't call. luckily though I found out here that there are alternatives to these third party organizations. Any info that you could give me would so much appreciated. Thank you!
DeleteMy daughter (9, almost 10) was diagnosed last week after a month of symptoms. Do any of you know of any clinical trials in the US for kids? Are kids with crps in Italy treated as well? Looking for more information....Thanks advance!
ReplyDeleteOh. my. goodness. Your almost 10 year old? That is too much. I am so sorry. I hope someone is able to reach out and help. I haven't heard anything about Neridronate and children. Have you found anything to help her?
DeleteFor unknown- contact Dr. Nazzarena Malavolta
DeleteNazzarena.malavolta@aosp.bo.it.
The treatment can be very hard and I'm not sure if they do this for children but it wouldn't hurt to ask. Good luck
Thank you very much! I am going to go back through this blog and email every provider! The more informed we can be, the better decisions we can make for her care. She has just started PT, cognitive behavioral therapy, and we take her swimming as often as she wants to go and can do it. She is wheelchair bound as both feet are effected, as well as her skin burns all over. Nothing to help her now. We are doing tons and tons of research, including looking into the Vecttor treatment in Houston. And she is on a waiting list for a pediatric intensive treatment program. I am also researching the diet changes that folks are suggesting. If anyone has suggestions for me, I am all ears!! Thank you, Jaimee K.
DeleteScrambler Therapy brought my burning pain from a 9 down to almost a 1. I went to Idaho to see Dr. Boese and my BCBS covered it. It's no meds and no side effects. http://www.paincareclinicofidaho.com/scrambler-therapy-technology/.
DeleteI will look into that as well!
DeleteMy Husband David has had CRPS for two years now , in his left hand and foot he was diagnosed with Peripherial neuropathy in 2014 and Crps followed along . There was no specific reason for the happening so he has type one {no cause} The four tests for CRPS were conducted but he didnt have the sweating . They didnt relize that his physiology is such that he dosent`t sweat. The question I am asking is is there anyone who has had similar problems with diagnosis. We can only see the specialist every six months so that has made things more difficult. thank you for your attention Barbara Croke
ReplyDeleteCan anyone tell me the name of the hospital in Bologna please?
ReplyDeletePlease see the below post.
DeletePoliclinico Sant'Orsola Malpighi Bologna Italy
ReplyDeleteNazzarena.malavolta@aosp.bo.it
You can email the doctor listed above (use google translate) and she will direct you to Gaetano the case manager!
I emailed her almost a week ago...no response yet. :( -Jaimee
DeleteHas anyone tried Calmare Therapy? My daughter has been having this therapy for 1 1/2 yrs. After the initial 10 treatments her pain went from a 9 to absolutely no pain. She remains pain free for about 10 weeks then has 2 booster treatments and will go another 10 weeks pain free. We have met a young lady that goes 10 months between boosters. My daughter is treated by Dr. Stephen D'Amato in Warwick R.I. our insurance covers this treatment. The only side effect she experiences is tiredness for a few days.
ReplyDeleteJK please try again. Maybe it didn't go thru. Or if you want to give me your email I'll send it to him
ReplyDeleteGaetano emailed me last night to see how I was doing. I've been meaning to update y'all too but my hands are doing so good that I'm able to watch my grandson again so I'm making up for lost time :). Sometimes I have to take a pain pill the day after if I pick him up too much but other than that I'm not taking them at all.
I'm so grateful to Gaetano, Dr. Malavolta, Melissa, Martha & Carrie! Y'all have given me my life back!
I'll be more than happy to help anyone I can!
Take care!
Penny
Awesome Penny! Go enjoy your grandson. I'm thrilled that you have gotten some relief.
DeleteThank you for the help and support from folk on this blog :)
ReplyDeletePlease contact me if interested. I starting Nuriedronate treatment soon in West Palm Beach. It's an open treatment, no placebo. I went through the assessment yesterday. 02-21-17.
ReplyDeleteThat's amazing news David! I hope it helps and you get some relief from it!
DeleteHello everyone, I am a study coordinator at Clinical Trials of South Carolina. We are recruiting participants for the open-label neridronate study in Charleston, SC. You can visit our website at www.ClinicalTrialsSC.com and sign up to receive a phone call from a recruiter or you can call 843-789-3797 to learn more about the study. We'd be happy to answer any questions you may have and evaluate you to see if you would qualify for the trial. Thank you!
ReplyDeleteHow wonderful! Thank you for posting!
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteDr. Paccanaro, are you with Medical Travel Italy? http://www.medicaltravelitaly.eu/
DeleteHi all,
ReplyDeleteI am Laurel and I am 60 years old. I was diagnosed with CRPS in October 2016, one month after my knee replacement surgery. I am taking Neurontin, Baclofen, and Gabapentin, along with ibuprofen as needed. I guess because I am early in the progression of this disease these medications are able to make my pain manageable though, of course never gone.
Your blog and the responses of many here have been of great help to me. I have been reading here for a couple of weeks but this my first time posting.
I read about the treatment in Italyin an online CRPS support group and the. I found your blog Melissa. Thank you so much for sharing and making all this info and sharing possible! You all are a blessing to me.
I would not have been able to even consider going to Italy for the treatment if not for a great financial gift bestowed to us. I am still shaking my head in amazement that this financial gift has come to us. Sooooo, as a result I have made arrangements to go for the treatment in Verona Italy!
I leave in 12 days (I live in New York) and treated will start on March 24th. I am in a daze, but a happy one.
THANK YOU to everyone here for all you have contributed to this thread and as a result, to my life.
Laurel, did you get the treatment? How are you feeling?
DeleteTatsiana, did you ever see my reply? I find navigating here tricky so I am wondering if I replied in the right place or not.
DeletePlease keep us updated on your experience. I'm still trying to find away to afford something like this (as well as figure out if it's right for me. I have other health issues at play.) But I would love to know how this works out for you.
ReplyDeleteHi Libby! I'm sorry you also have CRPS. There is a free trial here in the US right now. Someone linked it in the comments. I know of several people who are going to get the treatments for free. Everyone gets it too :)
DeleteHi
ReplyDeleteI found your blog while looking for Neridronate treatments for CRPS. Thanks so much for putting the work into this. i have CRPS since 2011 and its caused major other helath problems due to chronic pain. I wonder if anyone can help- I tried emailing the people in Italy but the email comes back saying there is no such address. I used the following emails: nazzarena.malavota@aosp.bo.it and gaetano.dioguardi@aosp.bo.it. I think the one to Gaetano may have gone successfully but the one to the doctor didn't go. Do I have the wrong spelling? I noticed that Dr Malatvota is spelled differently on the blog. Is is spelled Maltova or Malavota? ANy information would be very much appreciated.
Thanks so much
Ellen
Hi. The correct spelling is Malavolta although it is Gaetano that you will have all correspondence with. Gaetano is absolutely wonderful and extremely quick to reply always. Also, we are here now cor my wife and we feel so special the way he treats us, almost as if they feel honored to have us there.
DeleteI can't explain how much that means! I want to help as many people as I can! I have another young lady over there now! I'm nownover 5 months and down to 1 -409mh of gabapentin, 1 Vicodin low dose and still take my muscle relaxers as the pain now that I do have is muscular. Some days I have no pain! How is that even possible? The US needs to do something for its people! Keep us posted on your recovery!
ReplyDeleteLibby I certainly will return with a report. I can hardly believe I am going. I am going to a hospital in Verona for my treatments through a 3rd party contact (a liaison) that replied to our inquiries when my husband wrote to the CarPS team at the University of Verona Hospital. It is considerably more money using this service (they make ALL arrangements necessary except for flight arrangements) and provide an interpreter. Having pinched pennies all my life it was difficult to spend this money but the truth be told, I don't know at this point if either me nor my husband had the mental and emotional fortitude to get everything done, in a country unknown to us. Only because an unexpected small inheritance came to us last year was I able to do it this way but we just felt it was God providing it for this journey. But, for those who are shorter on funds by all means I encourage you to contact the hospital in Bologna.
ReplyDeleteIf you have received and are scheduled to receive Neridronate treatment in Italy, can you please post the following information to help others:
ReplyDelete1. Who exactly you contacted
2. The location of the service / organization carrying out the treatment
Thank you!
My little girl is 10 and was diagnosed with CRPS 2 years ago. It comes and goes in her ankles. I've been reading through all the comments and I think most of the therapies sound like they are not something that traveled could or would do. If anyone has advice for a child, please let me know.
ReplyDeleteThis comment is a test as I've tried numerous times to post something on this blog about Neridronate trials being cone here in Colorado. If this goes actually shows, I'll post more details.
ReplyDeleteTanzi, you might try the Calmare treatment for your daughter. We have had a wonderful experience with it and so have others who we have told about. We like Dr. D'Amato who was trained by the inventor of the treatment in Italy. He practices in Naples, FL. and people come from all over the country to him. There are other good doctors who know how to use this treatment effectively as well, but some have not been trained correctly and don't have good results. Dr. D'Amato could probably refer you to a good doctor in your area if you are unable to travel, but if you don't live on the east coast or in Idaho, you'll need to go to him. I hope and pray you have the same good results that our son has had in the past.
ReplyDeleteHi - My name is Janet and I'm 65 and am scheduled to start a clinical trial here in Colorado next week that I believe is the same treatment offered in Italy. It's being sponsored by the Grünenthal, the drug company that makes Neridronate. Rather than contacting the Patient Recruitment Service listed on the website, I suggest clicking through on the "Show the 38 study locations" and contacting the research center near you if you don't get a response from the Patient Recruitment Service. (I contacted the local research center - a mile from my house! - after learning about the trial from a woman in my support group.) If you'll look on this website you'll see that it will be offered in many sites around the U.S. https://clinicaltrials.gov/ct2/show/NCT02972359
ReplyDeleteNot only is the cost of this treatment free, you'll even get a small amount for your time and EVERYONE in the trial gets the medication.
As for me, I was diagnosed last year (the year following extensive spine surgery) and have Type 2 CRPS in both feet. My understanding is that only people with Type 1 CRPS of only a few months diagnosis were included in previous trials so it really will be an experiment to see how people like me will respond. I am nervous about side effects as the only thing I've gathered is that some participants have flu-like symptoms for about 24 hours after the infusions. I'd love to hear from others here about this. So, I PROMISE to post something here about the treatment experience itself so others have that info too.
My best to you all until next week - Janet :)
I am praying for you Janet! I hope the treatment goes well and the side effects aren't too bad. Thank you for letting everyone know about the trial & providing the link! Please check back in and let us know how it went :)
DeleteThis comment has been removed by the author.
DeleteNancy, It says your comment was deleted by me but I wasn't even on my blog the last few days. I'm just checking it now. I have no idea of how it was deleted and I'm sorry!!!
DeleteHi I need an advice!
ReplyDeleteI have just been diagnosed. I had injury in August, symptoms appeared November-December. I enrolled in clinical trials with open label same dose as in Italy but have an appointment in hospital in Italy for early May. I have to see whichever comes sooner. But still not sure what to do. If I stay in clinical trial I can't start any medication and on top of that they will have to draw blood 11 times in a year and needles seem to make things worse- even if it's a blood draw. My elbow hurt for a few hours after the blood draw yesterday and today my shoulder hurts. If I go to Italy I'm feeling a little scared- it's a different country, different system. Do they even care about us Americans who would go back home across the ocean after the treatment? But if I go to Italy at least I can start some kind of medication as a back up in case it doesn't work. I am suspecting the disease is spreading. I have contractions, aches and pains all over my body although the pain is a bit different as in the original site- right wrist. But I have been immobilizating and not using my right hand much trying to heal an injury. So the pain could be different there due to stiffness etc.
Please help!
Tatsiana,
ReplyDeleteYes, in fact I just arrived home from Italy today. Which hospital do you have the appointment in Italy with? I am guessing the one in Bologna.
I went to a hospital near Lake Garda the name of which escapes me right now as it is a long name and in Italian. I did go through a medical liaison who made all the arrangements for us (we were blessed with a large financial gift) not only at the hospital and with the doctor, but was our driver, interpreter (stayed with my husband and me during treatments), booked the hotel and more for the fee we paid. It was expensive but TOTALLY stress free.
The 4 treatments (IV infusions) were on Friday, Monday, Wednesday and Friday and lasted 2 hours each. The nurses werevery skilled and I never even felt the medication entering my vein which amazed me. The dr. put me in a 500mg Tylenol regime for two days after the first two treatments to help ward off any possible flu symptoms which as you have likely heard is a possible side effect after the treatments. I took the Tylenol (which was provided by the dr. and I never had a single side effect. There was also a woman named Susan who got treats right along side me each time I went. I had CRPS for just under 6 months, by a week, when I started my treatments. By the second treatment my nerve pain was gone! (While still on gabapentin and cymbalta but I could still clearly feel the nerve pain and hyper-sensitivity to touch while on them before the treatments.) I found I was able to walk more too but the muscle spasms would not permit me to walk too much. When the doc asked me how I was feeling I told her how amazed I was at the absence of the nerve pain but that there was no improvement of the muscles. She prescribed for me 3 supplements (which our liaison drove us to the pharmacy and helped us purchase) to take successively for the spasms. Within a week of taking the first one the spasms had decreased tremendously and I was able to go sightseeing with my husband! Before the treatments the max I could walk in a day was 3000 step. Since the treatments and while still in Italy I walked 6,000 steps, 7,000 steps and one day 8,000 steps with dramatically reduced number of spasms.
Oh, and I should tell you that Susan arrived in a wheelchair though on good days before treatments she could manage with a cane. She has had CRPS 18 months and it spread from her ankle to her hip. She too was in shock when by the time she had her 2nd treatment she no longer needed the wheelchair and after the 3rd she no longer needed the cane. She even went sightseeing under her own steam! We know the full effect can take up to 6 months so I am waiting and hoping the other CRPS symptoms go away as well. If they do I will be considered cured and not just in remission. If not. I am grateful to be rid of the horrible nerve pain.
I am not sure what else to tell you but if you have any questions feel free to ask! My prayers are with you.
Laurel
I appreciate the posts on this blog. Hearing first accounts of the Neridronate experience is helpful. I am looking for advice from those who have received treatment in Italy. I have been diagnosed with CRPS I for 1 year and 3 months. I have the opportunity to get the medication through the trial close to where I live.
ReplyDeleteMy concern and question is about the bone scans. I have read multiple medical journals that speak to how biphosphonates (Neridronate) correlate nerve pain to bones. Apparently, it has something to do with the absorption rate of blood in your bones etc..complicated medical stuff I barely understand etc lol.... It's my understanding that's why the doctors in Italy have people get the scintiscan or three phase bone scan. I have also heard of people getting the more typical Dexa scan for osteoporosis and/or MRI of the bone.
MY QUESTION: Did the doctors in Italy ask you for copy's of your scans? If so, what type of scans were they? And can you share what your scans showed? And what the doctors had to say about your scans?
I am worried because I've had the 3 phase bone scintiscan and it came back completely normal. One medical journal says that patients whom a scintiscan is often negative (long-standing disease or a primarily cold disease) could be less responsive to this treatment. Im only 37 and Im so worried about putting a medication into my body that stays in my bones for many years.... Im also worried that it could adversely effect having children (which Id like to do in the next couple years). So that's why I went and paid to get the 3 phase bone scintiscan.... because if it showed an abnormality of my bones... then it would be a no brainer to try this medication because it seems logical that it would work. But now, since my bones show to be totally normal - Im fearful that the medication won't work very well or at all. I plan to contact the Dr's in Italy to ask about this because I have not found one doctor in the U.S. who can speak to this relationship of bone, CRPS and biphosphonates. If anyone is willing to share information about their bone scans or anything you might know about this part of the picture - then I would be forever grateful! :) Thank you and my best wishes for a pain free life for all of us.
-Natalie
The Verona 3rd party asked for a 3D bone scan. I uploaded it to the drop box but no one ever told me if it was normal or not. I'll try to get a copy of the report from the hospital to see what it said - no one ever told me.
ReplyDeleteBologna asked for MRI & blood tests. They were looking for bone edema which I didn't show in one wrist because I had it done at the very beginning but the 2nd wrist showed some. They both asked for the dr. diagnosis.
I would email Gaetano & ask him if they've done the treatment on anyone who had kids afterwards
Picked up the report of the 3D bone scan. All it showed was mild arthritis
DeleteBill I went thru the 3rd party in Verona (the hospital there gave us his name and contact info when my husband wrote to the CRPS team on the hospital website) and they did not require a bone scan. Perhaps due to my early stage.
DeleteHi - Janet from Colorado here. I'm little frustrated with this blog since it didn't capture my post again so I'll try again.
ReplyDeleteAnyhow, I had my first infusion 2 days ago. I've just had a mild headache that started during the infusion that has stayed with me and I followed the Tylenol regimen. The nerve pain in both feet has been a bit worse pretty consistently since the infusion. I'm getting those little "zingers" that I haven't had for a while. I really don't feel bad, just a little sluggish. To give you an idea of how much, If I were in Italy though I would still push myself to do a little bit of sightseeing but wouldn't be real enthusiastic.
As for bone scans, I know I have some osteopenia from before my CRPS diagnosis and my internist says this treatment should make that better. But the "Study People" told my local research group that since Colorado doesn't have the type of scanner they wanted, they aren't requiring any past or current scans to participate.
I'll post more next week after my other two infusions - Janet
Hi Janet! I'm sorry my blog has not been accepting your comments. I've heard that from a few people. I am seeing this comment and I'm so glad you posted!
DeleteI'll be praying for your headache and the nerve pain in your feet. I'm sure we all know what you mean about zingers. That is a great name for them! It sounds so much cuter than they are though, huh?
Thank you again for the update! I know it is helping a lot of people to hear from those that are having these infusions.
Get lots of rest! :)
Hi Again Everybody - As promised, I'm back to update you on my infusion progress. The sluggishness i mentioned following my first infusion stuck with me for at least 3 days but the headache hung around longer. In fact, it was much worse when I moved my eyes so I got them checked out by my ophthalmologist before going back for my second infusion (optical nerve inflammation is a rare side effect and my body never seems to go the easy route). He said they looked fine and I felt much better so glad I checked.
DeleteBut, when I returned to the clinic for my second infusion I learned that too much protein showed up in my urine test that was done prior to my first infusion so I couldn't continue until it was rechecked. Today i learned that the second test had the same result in spite of lots of hydration, since everyone thought that might have been the problem. Now there's speculation that my aqua aerobics and weight lifting the morning of the tests may have affected the test (as long as I don't put weight on my feet I'm lucky to still be able to do these things).
BTW, I'm giving you all this detail in case it's helpful to others.
Anyhow, the plan now is to watch my protein intake, avoid exercising, and drink lots of water before testing again in four days. If I fail that test, it looks like I'll be excluded from the rest of the trial and probably wouldn't be eligible for treatment in Italy either....you people can understand how scared and disappointed I am.
There never seems to be a straight line in dealing with this disorder, does there? I'll let you know where this goes, again in case it helps others.
Janet :(
P.S. My support group friend who has had two infusions says her nerve pain is MUCH less. Unfortunately, now she can feel some nerve entrapment in her feet that the nerve pain trumped but she's still thrilled.
Janet I am so sorry to hear you are going thru all of this! May I ask, did they do blood work on you prior to the first infusion?
DeleteI have just been accepted into the clinical trial here in Fl. Very excited and will be happy to share my experience.
ReplyDeleteCathi I wish you all the best and pray it works for you! Are you going to get 100 mg over 2 hours in 4 visits? How far apart are the visits?
DeleteThe infusion is 400mg.over four hours. Same treatment ad in Italy. I am getting infusion as we speak. The two things that most people are not accepted are because of low Vitamin D and If you take anti depressants.
DeleteAwesome news Cathi! Please keep us updated :)
DeleteOn my 2nd infusion today. Only side effect is a headache. The dosage is 400mg. 100mg each infusion.
DeleteI went to Bologna and after my 3rd and 4th infusions I had the worst side effects. Head aches, swelling of my entire body especially my eyes, self contained fevers, vomiting, diarrhea, etc. CRPS causes liquid to enter the bones and then crystallizes the fluid not letting the pain receptors to shut off. Neridronate liquifies those crystals and then allows the body to start to remove the liquid. When the body starts to remove that fluid it pulls from everywhere, like a diuretic, thus pulling electrolytes and depleting those vitamins. That's why you can feel so horrible like the flu. I felt better 3 days after the third treatment and about a week after the 4th treatment. I strongly recommend bulking up on vitamins and minerals along with drinking tons of water while doing the treatments.
DeleteIt has been 7 months being back from Italy! My life has been forever changed! Some days I have no pain and others because of the stupid Indiana weather I get more muscular pain. I've had no flares since home and sometimes forget I have CRPS. I'm off almost all my meds as well. I will see My pain doctor next month to round out this treatment hopefully with some TENS unit treatments. If so, I could be 100% in remission. I have started a FB page to help others get this treatment and guide them. It's called CRPS Neridronate treatment Bologna- my personal story. I've been able to help several others and guide them and what a great feeling it's! Dr. Malavolta and Gaetano Dioguardi have no idea how they have saved my life! We can't wait to go back and see them!
Cathi I got the treatment in Italy and they said low vitamin D (which I did not have but I had not had my blood work done yet when I was told this) would delay my treatment until it could be raised but they said the Neridronate does not have any counter-interactions with any drugs. They know I was on an anti-depressant for the nerve pain and said it was fine.
DeleteHow are you feeling now? Hopefully some of those restrictions will change here for this trial, I know there is a high failure rate getting accepted. I did hear that they are working on changing some of the things such as the low D. Levels. Hope you are feeling better!
DeleteYay, Cathi.! I'm so happy for you and look forward to hearing about your experience. :) :) :)
ReplyDeleteThank You! Are you in this trial?
DeleteI went to Italy for the treatment. They did not require a bone scan. Purhaps because I was in the early stage. I had to get blood work done and send them the results as well as sending my x-rays and a statement from my doctor that I was diagnosed with CRPS. They actually asked if I had an MRI, which I did not, but they did not require it.
ReplyDeleteLaurel, yes, the Research Group did do the full battery of tests before I was allowed to enter the study and my kidney test then was fine. At least here, you do all of the tests before each infusion and the results determine if you can continue participation for the following infusion.
ReplyDeleteI just got a call a few minutes ago with news that I passed the kidney protein test (done by urine analysis) by one point so I get a second infusion tomorrow. Yay! Lesson learned that I'm passing on to you all - I'll be cutting all exercise out, eating minimum protein, and drinking all the water I can hold until I finish the study since I'm told they can all influence the test.
Congrats on passing the kidney protein test! I hope the second infusion helped!
DeleteI was in the phase 2 study for neridronate, and it was amazing! I have warm CRPS in my lower left extremity for 10 years. I'm 36 years old. I was able to run 20 miles a week and go off of all medication for 10 months. The pain is back now and I'm looking for something to take that doesn't knock me out. We have a 2, 10 and 11 year old. I don't want to miss their lives. We live in WV and I haven't ever met a single person with CRPS, and it has been hard enough to find doctors that know about it. I'm very down and frustrated right now. My pain was at a 1 or 2 with the neridronate and is at a 7 or 8 on a daily basis without and with all the medications. So I know what my life could be like. I get frustrated with my weight whigh increases with pain, due to lack of activity, and then causes more pain. We are looking into going to Italy, but I'm very nervous about having a medical procedure in a foreign country. Medical marijuana was just past in our state and will be available in about 85 days. I'm wondering if that will help. Any ideas, any help, any support groups? I am feeling a lack of hope with my pain so high and the phase 3 neridronate not finished unit 2019.
ReplyDeleteI have had a lot of success with medical marijuana. There are so many different kinds so I'm sure a dispensary will be able to tell you which is best for nerve pain. I took it right up until I tried Ketamine and then couldn't go back on it (I had a severe mental reaction to Ketamine and now I cannot do anything that makes me feel different without having panic attacks). There are a few support groups on FB. I have tried a few and like "rsd/crps love support and surviving the flames".
DeleteI don't know if you have read about the medications I'm currently on (I think I blogged in November about them) but they have helped me. But I know we are all different and what helps one person may not help another.
Praying for you!
Shanna, I'm so sorry to hear that your pain relief didn't last. I suspect many of us can relate to how frustrating it is get some hope, only to have the pain return. Have you consulted the RSDS website? They have a page listing where to find support groups.http://rsds.org/find-a-support-group-near-you/ Of all the things I've tried, I've had the best results with Mindfulness training, Low-Dose-Naltrexone, sublingual ketamine for really bad times, and lidocaine patches for my feet. I too have found my pain is greater when my emotions are high - the mindfulness training was a BIG help for that and I encourage you to consider it. I also take Alpha Lipoid Acid, Vitamin C, and Fish Oil, as suggested by my neurologist. I understand there was good support for these supplements and some others at the CRPS conference in Nashville recently. This combination allowed me to get completely off all my other pain meds.
ReplyDeleteI can't walk much anymore but I found i can swim, do aqua aerobics, some yoga and ride my bike, which at least gives me some ways to be active and control my weight. I have to work hard to focus on what I still CAN do instead of getting stuck in what I can't do anymore but I think it helps.
Personally, I wouldn't hesitate to go to Italy because of concerns about getting medical treatment out of the U.S. IF you've done the research to learn if the treatment center is reputable. And, it seems like there's lots of postings here about some that are.
Hang in there! Janet
Hi Janet in Denver,
DeleteI hope your treatment is tolerable and you are feeling less pain. I read your posts with great interest because I have a chance to be part of the study in Denver. They are currently running the various tests to see if I qualify.
Anything you can share about your treatments is greatly appreciated.
Rob
Hi Melissa and every single person who has posted here. It is so reassuring to read people's comments. My daughter suffers from CRPS she's 24.i want to bring her to MTI but costs are too high, inspite of being a single mother I was about to spend my life's savings to save my daughter. I am so so greatful to the person who guided me to your blog. Please someone could you help me with any information that you can give me regarding.. Thank you so much.
ReplyDeleteCheck out this website to see if there is a trial near you. It is free and the patient actually gets paid for their time.
Deletehttps://studycrpsnow.com/
I have had two of the four infusions and am already getting some relief...
Daniela
I just started trial today. It is the same 400mg as in Italy. Make sure you are very hydrated before doing urine test and Vitamin D levels have to be normal. If you take certain meds. Such as antidepressants. Maybe have D checked before and get a booster before screening if needed. I am more than happy to help in any way.7 people were excluded before me due to thes things
DeletePraying it goes well for you. Thanks for sharing here! You are helping so many people :)
Delete
DeleteIt has been 7 months being back from Italy! My life has been forever changed! Some days I have no pain and others because of the stupid Indiana weather I get more muscular pain. I've had no flares since home and sometimes forget I have CRPS. I'm off almost all my meds as well. I will see my pain doctor next month to round out this treatment hopefully with some TENS unit treatments. If so, I could be 100% in remission. I have started a FB page to help others get this treatment and guide them. It's called CRPS Neridronate treatment Bologna- my personal story. I've been able to help several others already and what a great feeling it's! Dr. Malavolta and Gaetano Dioguardi have no idea how they have saved my life! We can't wait to go back and see them!
HI everyone
ReplyDeleteJust found you guys. I have had CRPS for just around 7 years and am part of the clinical trials her in Seattle, WA. I did the first two infusions and did have the "flu like" symptoms, lower leg pain and a headache for 2 days that was brutal. I have been pretty much pain free for a couple of days now... which is weird. I havent been pain free since in the entire 7 years.
My question is.. Does anyone know if the infusions get rid of the pain permanently or is it temporary? or is that what they are trying to figure out?
If anyone wants to be a part of the trial here is the link
https://studycrpsnow.com/
My doctors told me that they are still looking for people to participate here in Seattle
thanks
Daniela
Hi Daniela, Someone below on these comments said they had CRPS for 8 years and the Neridronate allowed them to go pain free (or less pain?) for about 10 months before it came back. I haven't had it myself but it may be too new here in the US to tell for most people.
DeleteIm 7 months out from treatment in Bologna, Italy and some days I forget I have CRPS. The pain I have is muscular and tolerable to say the least. Please feel free to follow my FB page of mine as I share my journey and recovery at CRPS neridronate treatment Bologna-my personal story. I welcome questions and can guide people to Bologna. The case manager, Gaetano, is also on my page! They truly saved my life!
DeleteI am happy to hear that this is working for you..I just started trial today I Fl. I asked that same question and I was told some do and sometimes it returns. She said everyone is different.
ReplyDeleteMine returned after 10 months, but I had it for 8 years prior. But I'll take 10 months of no pain!
DeleteJanet from Denver here. As I posted above, I was able to get a second infusion here in Denver as part of the trial, which is 4-100mg infusions for a total of 400 mg. (According to the https://clinicaltrials.gov/ct2/show/NCT02972359 this is true for all the test sites in the U.S.) I had pretty bad flu-like symptoms (headache, body ache, heavy fatigue, joint pain, increased burning in feet, lack of appetite) that lasted for about 3 days. Unfortunately, the urine test on my kidneys done before the infusion came back high again so I can't continue until I get a normal test, which may not be within the 20 day window to complete treatment so double dang! I'll keep trying until they throw me out though.
ReplyDeleteI was told that the side effects and results seem to be different for everyone but also that Grünenthal, the drug company, would not be spending the money on this additional trial nor would it be on the FDA's fast-track had they not had good results from the first trial.
ROB, why don't you email me at janetlammens@gmail.com so we can talk specifics about the Denver trial?
Thank you sincerely to those who have taken the time to share your experience with the Neridronate. It's been very helpful in weighing my decision to be in the trial. I'm definitely following your posts on this blog and it's been great to hear it's working. I did ask the doctors in Italy about the bone scan and they said it's only used to help diagnose CRPS, but it's not always conclusive...which I did already know. They have not responded to my questions about getting pregnant afterwards though. I am a very technical person, and in order to feel comfortable about injecting my body with a drug that effects my bones, and in an effort to not just blindly trust a pharmaceutical company.....I have been relentlessly searching for an explanation of the relationship between bones and nerve pain. I just felt like I needed to understand this connection before I could personally move forward. I've asked every doctor possible, including the ones in Italy, to explain it to me. But, I've been glazed over every time. I badly want the biphosphonate (Neridronate) to work and I think understanding a bit more about the theories of "how" it's possible....will benefit my healing because it provides me a technical belief in the treatment. Soooo....whew! I have finally found a medical paper that was written about bone nerve pain and biphosphonates! And though it's super technical, I think it's helped solidify my decision to go for the trial. My initial appointment is set for May 31st. I'm very happy to know the warnings about watching my protein and hydration. My last piece of prep will be the birth control (Which I already have lined up). I will be sure to post my experience on this blog as I go. If anyone is interested in the article I found on bone nerve pain, you can download the full PDF with the following link. It's not a very long paper. And I would love to know what you think. My best wishes to everyone :-). - Natalie
ReplyDeletehttps://www.researchgate.net/publication/51431873_Complex_Regional_Pain_Syndrome_CRPSRSD_and_Neuropathic_Pain_Role_of_Intravenous_Bisphosphonates_as_Analgesics
This is an article that I found on Research Gate
DeleteLong-term Effects of Neridronate in Adults with Osteogenesis Imperfecta: An Observational Three-Year Italian Study
Article in Calcified Tissue International January 2017
Im part of a study in SC, my paperwork says the bone scan is used to calculate bone mineral density
DeleteIf that link doesn't work...try this one.
ReplyDeletehttps://www.hindawi.com/journals/tswj/2008/427379/abs/
Hi everyone - Janet from Denver here again.
ReplyDeleteBefore I forget, I just scanned the studies that Etoby posted the link to on this site and I'm not very literate myself when it comes to such studies but I thought I read that they were "preclinical studies" on animals and the other studies on the same treatment weren't specific to neuropathic pain caused by CRPS, which I understand is different than neuropathic pain caused by other medical conditions. I only mention this because of the need to have such studies specific to CRPS. Since I have Type 2 CRPS, I've looked a lot for such studies and haven't been able to find any but sure would like to see some.
Anyhow, I was able to complete the 4th and final infusion last Friday - the nurse stayed until 11pm and drove 15 miles home in a snow storm to be sure I met the 20 day limit to complete this stage of treatment. Man, those people are committed and I am so lucky to be able to do this with them! I spent the next 3-4 days feeling pretty achy in my joints and head and pretty fatigued....pretty much the same as after the other infusions....but not terrible. And drumroll please, I'm sorry to report that I don't feel much different. My feet might be a little less red - and I never did have allodynia - but that's it so far. No change in the neuropathic pain or edema. I was told it could take up to 60 days to see any effects so I'm trying not to be so disappointed. But, I certainly haven't experienced the immediate relief I've heard about from others that got the treatment ....yet. Has anybody else had a delayed response?
Ive been told it takes a full 30 - 60 days for total effect to take place. I just had my first appt today in Charleston SC for the study.
DeleteJut wanted to update you on the Clinical trial. I finished my final infusion yesterday. The only side effect was a really bad headache. I can say that I am feeling alot less burning nerve pain so I am very happy with that! This trial is at South Lake Pain Institute i Clermont Fl. Amazing Dr's that are so dedicated to finding a treatment that helps with this condition!
ReplyDeleteThanks so much for the update Cathi! I have heard about the headaches and hope your head is doing better when you read this :)
DeleteJanet I had the treatment in Italy last month. I had relief from the nerve pain after 2 of 4 infusions. BUT it took a month for the fatigue to leave and I am still waiting for the allodynia to go as well as for the heat in my knee to go. May 30th will be my 60 days since my 4th infusion.
ReplyDeleteI can identify with your feelings on some level because I got my treatments one week shy of 6 months from time of diagnosis and the woman who got the infusions along side me had it 18 months and was in a wheelchair when she arrived. I was not even using a cane yet all her nerve/CRPS pain left, her fatigue is now gone, her super sensitivity to sound is gone and her allodynia is improving.
I need my other knee replaced which is the main reason I am praying I get the total cure because the doctor in Italy told me if that happens I can do the other knee replacement without concern. The CRPS should not return occur at the second surgical site.
Don't give up! My prayers for further relief are with you.
Melissa,
ReplyDeleteThank you for what you do for all of us going through CRPS. My husband has had it for about 5 years but was only diagnosed with it 2 years ago. The community we live in knows very little about it so we've done most of the research and brought it to the doctors. Still, some were skeptical. Bill's started in his arm after ulnar nerve surgeries then moved to his back after they said he had Thoracic Outlet Syndrome and removed a part of his rib (didn't help), then moved to his stomach after he found out he had an ulcer. He uses a SCS for his arm and back and that helps but nothing helps his stomach. All the doctors do is throw more medicine at him to cover up the symptoms. I wish doctors these days would be more proactive and try to find cures instead of just putting a band-aid on it and sending you on. Our next step is Italy. Bill went through the trial in St. Louis with no response at all to the infusions. The doctor leading the trial had his license taken away right after so we tried to get into the Cleveland area trial for the active medicine but they said Bill had the medicine in St. Louis. I'm skeptical of that. There is no telling why they took the doctor's license away so I'm not convinced he gave Bill the medicine in the first place. I've read the information on 3rd parties and it seems sketchy so I'm trying to convince my husband to treat it as a vacation and go it on our own. We have the emails sited and will start working on it. He's on disability. There is no way he can be on the amount of medicine he is on and do accounting work, and I'm retiring from my job to help with the family business and get him as 'fixed' as possible to lead a somewhat normal life with our son who has Down syndrome. We will make it through this and am so grateful to have found a site like yours that has given us more information and hope than the dozens of doctors we've seen over the last 5 year. Keep up the good work and God Bless You!
Cheryl, I wish I had the words to comfort you and your family. With a condition like this, it really is the whole family that lives with it. My heart and thoughts go out to you all.
ReplyDeleteI can understand why you might think that Bill didn't get the medicine in Cleveland if he didn't have any response but now that I've been on several Neridronate blogs, I see more people that don't have a response to the medicine or at least a very minimal one. I too had my hopes up so high that it's difficult to think I might also be one of the ones that won't have the spontaneous miracle cure that others have had either. Double and triple dang! (I'm at about day 40 of the 60 day window where most of the response is supposed to take place so it's not over till it's over, right?) Mind you, I don't say this to be a downer but one of the things I've looked for on these blogs is patient to patient information since the research people really can't talk about outcomes until the study is published in about a year. Unfortunately, as I learned years ago in Clinical Research classes patient-to-patient (or self selected) feedback is always going to be skewed to those having extreme responses. I was told participants who have an "average" response typically don't post...they are off living their lives. So for me, it's important that I temper what I read on blogs as not being the "whole truth". We won't know that until the U.S. study's findings are published since the Italian studies didn't really have that enough participants to be conclusive. They were hopeful studies but not conclusive that this drug is the cure we all want.
I only say these things because its so very hard for those of us that are desperate for relief to remember that we aren't seeing the whole picture on the blogs. The hardest thing for me personally is to balance my hope that things will improve with acceptance that this may be my new "normal" and get on with what you refer to as a "somewhat normal" life.
Oh, how I can ramble......BTW, have you seen the material on this website intended to educate doctors about our condition? I'm carrying it in my purse now because as you point out Cheryl, a lot of doctors out there don't know much about how to treat us. http://rsds.org/clinical-guidelines/
Thank you! Right now we're focusing on finding anyone that has gone to Italy for the treatment to see if it's worth it. You never know who is really posting and if it's 'real'. It's not my 'vacation' of choice but as a family, we can make it happen. And maybe provide some relief to Bill. I'm going full force with this in a couple weeks when I retire from my teaching job. These guys need more advocates that have the energy and gumption to stand up for them. That will be my purpose and drive. Wish me luck!!
DeleteHi Cheryl,
DeleteI had it January & it is real. I was logged into this blog as Bill because I was on my husbands log in on the Ipad under Bill.
I know there's a lot of responses & it might be hard to find but I kind of documented some of my experience.
Luckily I'm back at work & when I'm not working I'm getting to play with my 19 month old grandson so I haven't been checking this website as much.
My number is eight one seven, eight seven five, three three three three.
Dr. Malavolta & Gaetano saved my life! I had contacted the 3rd party, put $6k down thru paypal & then no response (did get a refund). I found this blog - I pray for all ya'll every day! - was able to contact Bologna. I have a new found respect for things that my hands can now do. You don't know how precious something is until you've lost it.
Take care ya'll!
Has anyone here tried ...The Neurologic Relief Center in Fayetteville, Arkansas ? Dr. Katinka van der Merwe http://rsds.org/new-approach-rsd-crps/
ReplyDeleteI haven't tried her but I have read her book (being sold on Amazon). It sounds like she is a chiropractor that specializes in CRPS/RSD. One of her treatments sounds similar to Calmare in my opinion.
DeleteI believe a lady named Erin who contacted me about the neridronate is doing this. Is it like a 12 week course? If interested pls call at the number I left on the post before & I'll see if I can get back in contact with her
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteHi folks - I just wanted to let you know how things are going now that my last infusion was about a month ago. The nerve pain in my feet is better in the sense that I recover within a day after doing physical activity now, whereas it could take days or weeks before. Edema and redness is also decreased. In fact, there's days now that if you looked at my feet you wouldn't know there's anything different about them which is very different. In the last week I've also had the sensation though that someone is sticking needles in my right foot on occasion. It's intense enough that it takes my breath away mid sentence. (I'm sure some of you know what I'm talking about.) I'm hoping that means the nerves are growing back since that's how it felt when they were failing. But all in all, my pain and functioning is better now even though it's not perfect....but what body is, huh?
ReplyDeleteSomebody asked if I would do the infusions again and of course, the answer is yes. Even if I don't get full relief, I'm thankful for any relief and feel good about doing something(!) to try to find a cure for this damn thing.
My best to you all - Janet
As some of you have read themrought this great blog, many have contacted me personally through my email. I have helped several people with the process of putting together and answering questions about Bologna. I will do anything to help anyone with questions, concerns, and even give recommendations of where to stay. I have map to the hospital as well. The case manager, Gaetano, is a follower on my FB page that I started and he still checks up on me now almost 8 months out. Feel free to following and or ask questions about my treatment and I try to update monthly.
ReplyDeleteCRPS treatment Neridronate Bologna, Italy-my personal story. Please remember that this my personal experience and I only want to help others as does the creator of this page! Thanks for starting this page as my people have contacted me and asked great questions!
Kudos on your blog. I got lots of great information. I was accepted by the Verona hospitals but have been always been uncomfortable with the cost and their paperwork. Bologna sounds like a much better option. Unless I get accepted into the clinical trial here in California. I do have dental issues which may exclude me but we will see.
ReplyDeleteThanks for all the wonderful information. Can I subscribe to your blog? I'm thinking about this treatment.
ReplyDeleteI have another question when having these treatments were you able to drive back and forth tobtreatments
ReplyDeleteWell, my CRPS symptoms weren't as bad as many that have received this treatment but I had no problem driving back and forth when I had my infusions. I did feel a tiny, tiny bit light headed sometimes during treatment but the flu-like symptoms didn't really start until the next day for me. I actually enjoyed the time being pampered while getting the infusions (watching movies, reading, being overfed by the staff).
ReplyDeleteBTW folks, I'm now 60 days post first infusion and my symptoms overall have improved about 70%. My foot and swelling of my legs are both down so I don't have to wear my compression socks all the time now and my feet aren't as red. I also recover faster if I go shopping and can walk for up to 30 minutes now. An hour or so of resting and I'm back up again....really, quite remarkable.
My best to you all, Janet from Denver
Thank you so much for answering my question.
DeleteHave a Blessed Day
Joy
Carrie I've read your posts and they are very hopeful. I have had RSD in my leg and foot for about 16 months now. Like everyone else my story is much the same....I was wondering if you had sent your bone scan or MRI with blood work ahead of time to Gaetano and Dr. Malavota to find out if you were a candidate for the infusions before you booked your trip? Are there hotels there that you would recommend? This all seems so surreal. I appreciate any information you can provide.
ReplyDeleteThe Neridronic Acid studies are still on going here in USA,near me are NJ/PA,just look it up in your area.
ReplyDeleteThe Neridronic Acid studies are still on going here in USA,near me are NJ/PA,just look it up in your area.
ReplyDeleteAlso doing neridronic acidvstudies at northstar research in Cleveland Ohio. I just got approved and start infusions on Monday. I'm going from Virginia to Ohio.
ReplyDelete