Wednesday, September 14, 2016

Neridronate for CRPS 1 & 2



I have been collecting information on the infusion called Neridronate which is being offered in Italy for CRPS/RSD.

This is the information I have collected. I realize it is in a horrible format and is hard to read. But I am hoping to add & edit this as I find out more.


“As far as patients that have had CRPS/RSD for less than 6 months, the treatment is guaranteed to give patients a complete reduction in pain. In the last 4 years since the approval of the treatment, there hasn't been any surveys conducted on current patients because it widely used now for CRPS/RSD patients.”

Now, I have tried & tried to speak with (through Skype, email, FB, etc.) anyone who has had this treatment and I cannot find one single person who has had this. That does not make me feel at ease with traveling to Italy just yet.

(UPDATE: I found one person. He is the author of CRPS/RSD Survival Guide and his name is Christopher C. Allen. We are trying to set up a Skype talk (which is $100/hour) so I can find out more on this treatment. He currently hasn't emailed in two days when I asked to speak with him and so I'm hoping he responds soon.)

The name of the company is called: "VENITALY - VCS Venitaly Consorzio Stabile", they are responsible for our finances and services. 



The Facebook group "CRPS Treatment" was made because the University Hospital of Verona (AOUI) was getting many support groups for CRPS reaching out to them and they don't have the staff to follow overseas patients.

HOWEVER, I believe this is a 3rd party company that tries to sell an $11,000-$13,000 trip which will cover transport, hotel (any hotel up to 200 euros a night) & the 4 infusions. The infusions alone are absolutely NOT this expensive. This company has their first patient group coming over in September 2016 and has promised to post the information/results on their Facebook page (CRPS Treatment) but has of September 14, 2016 I have yet to see anything posted. Their website is:
http://crps-treatment.com/.


The hospital has been doing these treatments for 4 years and do an average of 15 patients a week.

Studies have shown that this medication (Neridronate) can cause necrosis of the jaw. I was told that this only happens with the oral medication and not the infusions. The known side effects of the infusions are: fever, joint pain. Again, this is only what I have been told since I have not yet spoken to any one who has had this treatment.



Hospital Website:
- Azienda Ospedaliera di Verona:
http://www.ospedaleuniverona.it/ecm/home


Doctor involved in the trials in Italy and the approval of Neridronate use in the cure for CRPS:
- dott.Massimo Varenna Publications:
http://www.labome.org/expert/italy/university/varenna/massimo-varenna-438627.html

Current doctor, who is responsible for the Rheumatology Department in Verona, and who will most likely handle the treatment:

- Prof. Maurizio Rossini - Contact information, curriculum, and accademic work in Verona: http://www.medicina.univr.it/fol/?ent=persona&id=2341&lang=it



If you want to contact the hospital and ask if Prof. Maurizio Rossini is an actual doctor there, if the treatment is real, and if we actually scheduled an appointment there:




There was a trial in the US with Neridronate. I have found one girl’s blog who believed she had the medication:
BLOG: https://kathrynspages.com/2016/05/30/neridronate/

There are many questions. Here is the 3rd parties website FAQ for you to check out. Again, this is not the hospital – this is a 3rd party.


FAQ:
http://crps-treatment.com/wp-content/uploads/2016/06/FAQ01-Neridronate-for-CRPS-RSD.pdf



Here are a few more statements I have found:

* The treatment, recognized by the National European Health Authority, consists of 4 infusions of an hour each via intravenous of a drug called Neridronate.

* Everyone can benefit from it – even patients who have had the disease for many years – at any stage of the disease. It has been verified that in 100% of cases there is a reduction in inflammation and a permanent remission of the pain that goes from 20% to 100%.
* Neridronate in Italy is the therapy of choice in the cure against CRPS and it is practiced by the National Health Service on a large scale.
* In the US, Neridronate is still in its experimentation phase and probably will not be available for at least 10 years.
* Neridronate is used as therapy for both CRPS Type I and CRPS Type II.
* The Neridronate is essentially free of side effects.
* Once the therapy is administered, in the period of 15 to 20 days, a solution of the symptoms will begin up to complete recovery in two months’ time.
* Currently, the US is undergoing trials in which only patients that have recently contracted the condition.
* During the trial, the patients will not know if they have been treated with Neridronate or with a placebo (sugar pill, or false drug) and, if they did receive Neridronate, the quantity administered is not the same administered in the Italian therapy.
* CRPS Treatment is tasked with rendering the treatment available for all US patients, gathering requests, making appointments, and handling logistics.
* The therapy is conducted in the Rheumatology department of the University Hospital of Verona, guided by Professor Rossini, successor of Professor Adami, both authors of the studio that verified the efficiency of Neridronate in the cure against CRPS/RSD.
This is the 3rd party trying to sell packages for between $11,000-$13,000: For information contact us at +393357363517 (Cosimo), +39 345-716-0374 (Troy) or medical.team@crps-treatment.com indicating your contact information and hour of preference to be called at.





I reached out to Troy and he then sent me an email stating the following:


​The therapy consists of 4 days (4 sittings, 100 mg infusion per sitting). ​

The medicine to reach full effect takes about 60 days.




On a national scale, the Department of Rheumatology at the University Hospital of Verona (AOUI) is a national referral center for the treatment of CRPS / RSD; the head of the department which will follow your case is Prof. Maurizio Rossini, the successor of Prof. Silvano Adami; both of them where among the authors of the study on the beneficial effects of neridronate on patients affected by CRPS.



The University Hospital of Verona is considered one of the best state hospitals in Italy and in Europe, it's the hospital with the largest amount of operating rooms in Europe, about 2000 people benefit from daily outpatient services daily, including neridronate infusions.



As we said on the phone, these are the documents that I will need to organize your visit.



1. Medical records with diagnosis of CRPS/RSD condition

​;​

2. Blood analysis results with level of creatinine

​;​

3. Copy of your passport

​;​

4. Copy of ID or driving license that indicates place of residence in the US

​;

5. MRI of injury or affected areas​





Here is more about Neridronate in the US (study/trial): https://clinicaltrials.gov/ct2/show/NCT02402530

Here is what the RSDS.org website states about Neridronate: http://rsds.org/new-u-s-clinical-trial-of-neridronate/

The study is now closed.



The author of the book The CRPS/RSD Survival Guide is also organizing trips to Italy and has several packages as well. I will be including these shortly. (I accidentally somehow deleted his email. Ugh.)

The book is $30 on his website. I have purchased it and am currently in the middle of the book. I will update this blog post with any pertinent information. 


Here is a clinical development of this drug when used for bone diseases with mention that it may be used in the future for CRPS:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3622395/


Sunday, September 11, 2016

September 2016

Happy September. It is still warm here in Florida but the Gulf is turning slightly too cold for our liking. Could we celebrate Labor Day and then just fast forward to Memorial Day? I like when it is humid, sunny and 90 degrees out.

 We didn't do anything special for Labor Day. My husband sang at a retirement community and I'm sure I was in bed for most of the day. But honestly I don't mind.

 We also had a hurricane make its way through FL. We thankfully only lost power for several hours and it was late at night anyway.



 Our front yard turned into a shallow pool and we had some water come into our lanai. We are thankful it wasn't anything more.





 I have made it to the grocery store twice in the last three weeks. My husband is getting MUCH better at choosing fruit since we are both still eating quite healthy. Fruit, veggies, seeds, nuts, local raw honey and organic chicken. The hubby also eats eggs and grass fed beef. I have absolutely seen a difference in the level of pain in my body. I still have that searing nerve pain but the pressure in my joints has been better.

I'm so thankful for this electric stimulus machine.
 I have been playing around with adding a food back into my diet about once a week and seeing how my body responds. Grapes were a major no. They caused pain. Cashew butter was absolutely a YES! Holy cow, how amazing is cashew butter? I eat it straight out of the jar. Potatoes were a yes and caused no pain. Except without butter or cheese, potatoes are quite dry. I'd rather eat pecans which is what I'm doing. But it is good to know that I could eat a potato without adding pain if I wanted to. I tried wheat this week and that was a no as well.
Headed to Wal-Mart in my new (to me) sweater that cost just 33 cents- score!
My husband doesn't have too many more projects at our home which is fine by him. I added this little sign "We are all broken" to the top of my dresser. I collect broken shells and swap them out every once in awhile.


And now for some dog photos from the last month or so.





We are checking into a new(ish) treatment for CRPS called Neridronate. After Ketamine in January, I'm leery to try anything. However I will speak to someone this coming week who has had Neridronate. It is being used in Italy and has been used for 4 years to treat CRPS.

Past that there really isn't anything too thrilling to report. I have only had two panic attacks in the last several weeks though they were back to back.



Every once in awhile I take myself off narcotics when I feel they aren't helping as much as they should. I have my doctor's permission to do this and it will be this week for as many days as I can stand it. I have a doctor's appointment tomorrow but then the week is open which means I can stay in bed while my body hates me.

Thank you all for your encouragement & prayers.


Wednesday, August 17, 2016

August 2016

 Happy August!



I will get all the dog photos out of the way. I have never been an animal lover like my sister or husband but I am in love with our little dog. She is sweet and has done amazing at transitioning into our home.

 Her previous owner named her Cannoli and the rescue called her Callie. Both are adorable names but she responded to neither. I still call her them once in a while to see if she responds. Nope.
My husband has always wanted a dog called Fred. But we have a girl dog. And so on her paperwork she is Frederica. But we call her Fred. Mostly we call her Sweet Pup or Good Girl though.

 She sleeps in my bed and does so well. We have her bed in my bed but she snuggles with me in the mornings and hangs out with me during the day. She loves my husband because he gives her treats when she sits & he takes her on long walks which she adores.

She likes tucked in and she LOVES her dental bones. The dentist said they are great for plaque but it takes her days to actually chew one so she just carries it around the house with her.


We didn't set out to spoil her but she is just so dang cute.

Also happening these past few weeks...We got another couch. Ha. I think this is the 8th couch since moving to FL. And I think it will be our last (did I say that with the other 7 couches though!?!) We have realized my hips need to be completely flat to help with the pain. I knew that but I kind of thought the last reclining sofa was good enough. Nope. Completely flat. We have made money on the couches we have purchased & sold and so although this one was $400 from Craigslist, we are still "up" in the couch category.

Ikea Kivik Sofa & Chaise

Around the house...the house is basically done! I know I took "before" photos of the 2nd bathroom but I have somehow lost them and so I will just use these.

It was the last room of the house to be complete which was fine because it was overall in good shape. We hadn't planned on tearing out the vanity but my husband found a pedestal sink for $15. The toilet & shower/tub were in great shape. So he ripped out the little back splash piece and the vanity.

Then he fixed the floor which Home Depot thankfully was still selling and fixed the walls and painted. I flip flopped between deep teal and navy but ultimately it is a small bathroom and we already had light blue paint. A Home Depot "oops" paint for 50 cents was dumped into the light blue and we came up with this lovely color.
Pedestal sink: $15
Extra Tile & Mortar: $20
Mirror: left behind by our sellers
Extra plumbing pipes & supplies: $30 (pipes are pricey things!)
Medicine cabinet (shown over the toilet): $10 at a yard sale
Glass knobs: $1.50 each on Amazon and left over from another project
Shell light: free
Paint: 50 cents
Molding: found by the side of the road so free!
Shower curtain & rug: found on the side of the road so free!
Dolphin faucet: $50 - we used our anniversary gift money to pay for this
(thanks Mom! thanks Li & Dutch!)
 Overall it was a fairly inexpensive re-do and I love the results. We may look for another mirror (at a yard sale if we ever do those again (stupid body) or on the side of the road) but that is a thing that can be switched at any time because this one is just fine for now.
 The other side of the bathroom is just a blank wall and the door which I clearly didn't think interesting because I have no photos of it.

Other happenings:
We had friends stay just a few miles away last week. Thank you for coming to visit Anna Maria Island! Thank you for driving the insane 40+ hour round trip to see us! We loved seeing you and spending a couple days with you on the beach. I know you will be back next year and cannot wait!

My husband on his float.
 They stayed at our friend's condo. We found her condo when we did a home exchange many years ago. Franca has been awesome with renting to us when we vacationed here, then renting to my mom & sister and then my mom last year. Now Kristen & her kids got to use this condo.

My husband checking into the condo before Kristen & the kids got there.
From left to right, back row: Me, Kristen, Abby (a friend of Taylor's), Jessica, Taylor
From left to right, front row: Jaime, Carter & Megan

My husband pretending to do gymnastics on the beach

Abby & Taylor - REALLY doing gymnastics!



I was down for a few days after but I loved seeing them. I have really missed having friends and these kids are awesome.

Thank you Megan for the lovely aqua vase with the shells that she gifted me before they made the big drive home. I love it!

My sister also sent two fun packages this week. More homemade cards which I not only love to get but I love to send to others. And a fun little cow squeak toy for Fred.





I went to the doctors twice this past week. My pain doctor is awesome and I am blessed to have him. My right foot including my big toe stays numb about 90% of the time. I have gotten use to it and it doesn't hurt. He is also referring me to another doctor to see what he thinks. I really don't want more testing because 1. They are expensive and 2. They require me going to more doctors. But we will see what they say.


Just a random photo because doctor stuff is never interesting.

My other doctor appointment was to the psychologist. He is a new doctor and this was my second appointment with him. He is also amazing. My panic attacks and anxiety have decreased and I am putting the little tricks into practice that I am learning from him. I have only had 4 "episodes" this past month of feeling like I cannot breathe and having that dreaded heaviness on my chest. That is amazing compared to last month.





A random squirrel hanging on a tree outside our villa.

My diet continues to be raw fruit, raw veggies (though less veggies than fruit), nuts and seeds with some organic chicken thrown in. And I am having less overall joint pain. Do I miss pizza? Not really but only because I know it will cause pain. I do miss black olives though. And I may add those back in at some point and see how I do.

We found this "It Works" tape in someone's "trash" (a bunch of left over yard sale stuff set by the side of the road). It was sealed and so I picked it up. It works amazing at compressing my fingers when they ache and I want to chop them off. I don't leave it on much past my fingers turning colors but it helps.

I still have pain every day and it is shocking sometimes. I am so aware of my body. I can feel the outline of my hands and feet and I think I can sketch the nerves inside them. I am grateful that my head doesn't hurt and my back is usually okay. It gives me a point of reference because I cannot remember a time when my arms and legs didn't hurt. I know it in my brain but I cannot remember what it feels like. I tell myself "when is the last time you thought about the tip of your nose" and the answer is almost never. My limbs use to be like that. I didn't think about individual toes or the backs of my knees which are now on fire. I was diagnosed 3 years ago with CRPS. Not that long ago considering I am 36. But the pain takes over and is very isolating.

Think of when you have a bad headache (which thankfully I don't get). You are so aware of your head. You press it, you take pills, you pray it goes away as soon as possible. That is what happens. I'm so aware of my limbs. I have my husband lay on top of me, I try just about anything to stop that pain. Or override it by causing more pain. He presses the parts that can withstand touch and I tell him to press harder. He says he is scared of breaking something. Break it, I say. But he doesn't.


I plan on putting this on the back of my door so it can give me hope through the bad times.

When it is at its worst I give up. I don't try because trying means moving and I don't want to live at that point. This is not a cry for help. But I get why people cut themselves. I get it and I am so sorry for everyone who has pain this deep.

But right now the medication is helping and my pain is lessened. I have hope again.

I wish you all a day that is full of little joys and smiles.






Sunday, July 31, 2016

New Dog (way too many photos)

Photo credit: Rescue A Dog, Inc.
 This will be a fairly short post but I wanted to introduce you all to Callie! She is a 4 year old Maltese/Poodle mix who is also a service dog. She is about 6.5 pounds.
Photo credit: Rescue A Dog, Inc.

My husband mentioned getting a small dog several times (a lot!) over the last few months.
 My husband mentioned getting a small dog several times (a lot!) over the last few months. We finally signed up to foster small dogs in our area a few weeks ago but we were warned that small dogs go quickly and usually don't need foster homes.

We visited a local dog shop to hold a few small dogs but I knew that I didn't want to pay over $2000 for a dog nor did I want to buy a puppy. I really wanted to rescue a dog if we could.


Photo credit: Rescue A Dog, Inc.
This past Tuesday I went on local rescue sites for the first time since moving to FL. It was 9pm and there was a sweet dog who was listed that day. Callie.
 She was a service dog for those with anxiety (me!).
 I called the rescue that night thinking I would leave a message. I spoke with a kind woman who directed us to fill out an application.

We filled it out immediately and followed up the next day. They let us know that Callie was extremely popular and not to get our hopes up.
 Then we got a call to set up a "meet & greet" on Saturday.
 Yesterday we picked up Callie. She is just so sweet and we cannot believe how much we love her already.
 The rescue supplied us with some food, treats, a toy, adorable little clothes and a bunch of other stuff.
 Bare (my husband) will be heading to a pet store later today for a dog toothbrush, toothpaste (or whatever they use) and some other necessities.
 She has fit right into our (boring) routine and we watched HGTV together this morning. She mostly slept.
 I'm home almost all day every day and she will be a wonderful companion for me.
She loves our front yard & going outside. She was also pretty great when we bathed her.


Isn't she sweet?
Thank you SO much to Leanne & the people who work at Rescue A Dog, Inc. We are in love with Callie.