Wednesday, September 14, 2016

Neridronate for CRPS 1 & 2


**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. I have absolutely had less nerve pain. So 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!


110 comments:

  1. 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

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  2. Hi Den & Kar!

    I'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

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  3. 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)

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  4. Thank 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.
    One 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.

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    1. 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.

      I 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.

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    2. 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!!

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    3. I 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!

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  5. I have an e-mail from Chris and he paid $1400 for treatment. He did not reply what year he had it done.

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    1. Thanks! 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).

      THANK YOU for your comment!

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  6. Chris 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.

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    1. This 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.

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    2. I 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.

      I'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.

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    3. 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!! =)

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    4. Hi, 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.

      I 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.

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  7. 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.

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    1. This comment has been removed by the author.

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    2. Dp you know how i could get funding to go to italy to do the nouridronic acid? Please and thank you

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    3. I 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.

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    4. I 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.

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    5. There is an open study using the same treatment as in Italy at the Clinical Trials of Charleston in North Charleston, SC for free.

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    6. Unknown 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!

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    7. Bill 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!

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  8. Hi Melissa,
    I 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!

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    1. Any update Bill? Have you heard from Troy or anyone over there?

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    2. Troy, read my message down below.
      I 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

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    3. Thank you again Marty! Your information here is invaluable to so many of us!

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    4. That's great Marty!! Thanks for the post!! Very encouraging!! Can't wait to hear about the whole experience!!

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  9. I 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.
    I 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.

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    1. 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!

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    2. I 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?

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    3. Marty 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?

      Melissa I just found your site, and am sooo beyond grateful for it and the information you've shared.

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    4. 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.

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  10. Hi Marty. How do I get in touch with Dr. Maltova?
    Thanks in advance!

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  11. 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.
    She was part of the original study in Italy 4.5 years ago when It first came out with Dr. Abadi in Verona.

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  12. I read your comment wrong.
    Here 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.

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  13. Dr. Nazzarena Malavolta

    Nazzarena.malavolta@aosp.bo.it

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  14. Thank you so much!! I emailed her & the clinician responded!!

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    1. They 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!

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  15. That 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.

    Anything else I would be glad to help.

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    1. 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

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  16. We're scheduled for January 4th! Thanks so much to all y'all!

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    1. Awesome!!! Please let us/me know how it goes! What a blessing to be able to have hope again I'm sure!

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  17. I 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!

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  18. I 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.
    I 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!

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    1. Thank you Denise for your comment and all your suggestions!

      I 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!

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  19. 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!!!

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    1. That is awful! You should have never been made to withdraw so quickly! Your doctor was wrong.

      I 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.

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    2. 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.

      Kristen

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  20. 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.

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    1. THANK YOU Laban! This is great news! Please, please keep us updated!

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    2. Hello 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 :)

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    3. Hello! 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.

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    4. I 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.

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  21. I 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)

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  22. Here is the official link to the trial: https://clinicaltrials.gov/ct2/show/NCT02972359?term=Complex+Regional+Pain+Syndrome&rank=24

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  23. Hi y'all,
    Today 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!

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    1. Thank you for letting us know Bill! I'm hoping the treatment works! Yes, please let us know :)

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    2. Hi 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 :)

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    3. Check out the open trials in North Charleston SC. It is not a placebo study. It is the same treatment you will receive in Italy.

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  24. Hello 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.

    helpful 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

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  25. 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.
    I 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

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  26. That's _ between bill & mcac. I've been told to be careful putting our email out there because of crawlers or something like that

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  27. Melissa 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.
    I'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.

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    1. Thank you for all the great information Dixie! It is great that people are commenting and helping others.

      Yes, 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!

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    2. Where in West Jordan UT I live in that Valley and would love to know the clinic or office doing the trials?

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  28. I 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!

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    1. Awesome Carrie! I'm glad they were able to take it out because of your improvements. Truly a wonderful thing!

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  29. This comment has been removed by a blog administrator.

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    1. i 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.

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  30. I used google translate to show Gaetano Carries's last comment on my last infusion.
    He 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!

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    1. Hi! How have you been feeling?

      Nope, 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.

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    2. 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!!!!

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  31. 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.

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    1. I 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.

      I 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!

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    2. For anyone looking for the treatment in Bologna, Italy, please get in contact with Dr. Nazzarena Malavolta

      Nazzarena.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!

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    3. 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

      Melissa, I am so delighted to hear your mix of medications is giving some improvement!! So pleased for you :)

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    4. 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.

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    5. If 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!

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    6. Thank you, that would be much appreciated

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    7. Bennettfamily510@frontier.com
      Please 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!

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  32. My 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!

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    1. Oh. 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?

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    2. For unknown- contact Dr. Nazzarena Malavolta

      Nazzarena.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

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    3. 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.

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    4. Scrambler 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/.

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    5. I will look into that as well!

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  33. My 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

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  34. Can anyone tell me the name of the hospital in Bologna please?

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  35. Policlinico Sant'Orsola Malpighi Bologna Italy
    Nazzarena.malavolta@aosp.bo.it
    You can email the doctor listed above (use google translate) and she will direct you to Gaetano the case manager!

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    1. I emailed her almost a week ago...no response yet. :( -Jaimee

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  36. JK please try again. Maybe it didn't go thru. Or if you want to give me your email I'll send it to him
    Gaetano 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

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    1. Awesome Penny! Go enjoy your grandson. I'm thrilled that you have gotten some relief.

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  37. Thank you for the help and support from folk on this blog :)

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  38. Please 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.

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    1. That's amazing news David! I hope it helps and you get some relief from it!

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  39. Hello 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!

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  40. Claudio PaccanaroMarch 7, 2017 at 6:57 AM

    I'm Dr. Claudio Paccanaro. I was a close friend of Professor Adami who died of a tumor. I know very well even Dr. Varenna and Dr. Malavolta. If you have any questions I can give you answer. My email address is pcc@paccanaro.it

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  41. Hi all,

    I 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.

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  42. Please 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.

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  43. Hi
    I 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

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    1. 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.

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  44. I 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!

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  45. Libby 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.

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  46. If you have received and are scheduled to receive Neridronate treatment in Italy, can you please post the following information to help others:

    1. Who exactly you contacted
    2. The location of the service / organization carrying out the treatment

    Thank you!

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  47. 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.

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  48. This 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.

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  49. Tanzi, 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.

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Thanks for commenting!