CRPS Neridronate Treatment in Bologna, Italy- My personal story

https://complextruths.org/treatments/infusions/neridronate-acid-clinical-trials-cancelled-by-research-giant/

This drug is used to treat Rheumatoid Arthritis and is FDA approved in the US and many other countries. The Dr in Bologna created the first trial to use neridrondrite to possibly treat CRPS. She already leads the RA clinic there and they treat their patients with CRPS early on in diagnosis which is the key factor when trying to put CRPS in remission of any form. You don’t use this on people that have had CRPS for many years.

Neridronate Acid Clinical Trials Cancelled by Research Giant Neridronate Acid for the treatment of Complex Regional Pain Syndrome, CRPS, Phase 3 clinical trials were cancelled July 1, 2019.

As of this time I do not believe that Bologna is actively doing treatments and I do not have any current contact information for the dr or hospital. I do know that the Spero Clinic in Arkansas, US is doing treatments.
Good luck.

https://www.facebook.com/speroclinic

Spero Clinic We use cutting edge techniques to get to the cause of severe chronic pain and neurologic dysfunction.

I was contacted by a gentleman who’s best friend suffers with CRPS and wanted to do an article about my trip and treatment. Thanks for sharing my journey with CRPS!

I do not offer services. This is a page I started after my treatment in Bologna. I try to help others maneuver through the process. Right now Bologna is not taking any patients. Genoa is and I’ll share the contact I had last.

[email protected] . Treats both type 1&2. That is the doctor but it is quicker to send it to [email protected] - another CRPS sufferer got Andrea's email and got answered almost the same day. She is Dr Gerolamo's right hand person. She is a doctor too.
Also, a good page to follow is CRPS neridronte US study support group!

http://ushealthtimes.com/fda-designates-crps-drug-as-breakthrough-therapy/

FDA Designates CRPS Drug as ‘Breakthrough Therapy’ The U.S. Food and Drug Administration has designated an experimental drug as a potential breakthrough therapy for Complex Regional Pain Syndrome (CRPS), a chronic and disabling neurological disease…

So happy for her to have access to this treatment. This is why I started this page. So others can easily have access to find information and ask questions while they make tough decisions. Dr Malavolta and Gaetano are simply amazing.

Last year at this time I was questioning my decisions as many do just weeks out of this treatment. Will this work, was it worth it, when will I know. It was a long year and I can happily say for myself and my family I would do it all again.

I feel like the next spring and summer will be the true test to see if this is a just seasonal changes causing more days that are troubling or the treatment wearing off. Only time will tell.

This was a post from last year on this day. I'm glad I posted to see what and how I was feeling.

Being diagnosed with CRPS not only does this 30 degree temperature flux hinder my recovery by 10 fold, so does barometric pressure changes, & percussion like fire works. I cower on the 4th of July putting layers of clothing on and even doubling up on approved medication all while hiding in my bed and missing the celebrations with my family. My recovery from Italy was amazing until these weather changes started. I will truly say there were day with almost no pain! I have to reminder myself I'm only 39 days in but man is it hard.

Even though I've had amazing results with Neridronate from Bologna last year, winter has hit Indiana and when the seasons started to change, I have had increased pain. Bursts of burning maybe 5-10 seconds every once in a while, but the pressure in my bones is what is given me tons of pain. I've even installed a barometric app to help me monitor. It's so hard to complain when I am so much better, but now I'm not used to pain like this and I've been in bed all day and even had a flare. Once again, NA is definitely not a cure. People need to know if a company tells you that NA is a cure remember there is no cure.

The last 30 days.

When You Feel Trapped by 'Flare Fear' "'Flare Fear' – the thought of what might happen if you do too much or choose the wrong activity on a good day."

Reality as it's not just the people with CRPS that suffer, the whole family does.

This was from 2012-2013. How amazing would it be to have this done again?

I had NO IDEA she suffered from CRPS. She was diagnosed years ago. Anyone else know this?

https://myjourneywithrsd.com/2016/02/10/paula-abdul-putting-the-spotlight-on-rare-disease/amp/

Paula Abdul: Putting the Spotlight on Rare Disease SMILING THROUGH THE PAIN: Paula Abdul maintains a positive attitude throughout her battle with chronic pain caused by RSD. Pop icon, Paula Abdul, opens up about her daily struggle with Reflex Symp…

I'm so lucky to have met so many wonderful people in this journey and that I'm able to now help others. One day I pray the US will make Neridronate an affordable treatment for anyone suffering as a part of a treatment plan.

People walk next to us daily not ever knowing how much we suffer!

Here is a women starting her journey in Bologna! Check it out and ask her questions as well! Together we will fight CRPS!

Dr Malavolta was the doctor that treated me while in Bologna last year. She was among the doctors that helped establish this treatment!

https://doi.org/10.1093/rheumatology/kes312

Treatment of complex regional pain syndrome type I with neridronate: a randomized, double-blind, placebo-controlled study | Rheumatology | Oxford Academic Objective. Complex regional pain syndrome type I (CRPS-I) is a severely disabling pain syndrome for which no definite treatment has been established. The aim of this multi-centre, randomized, double-blind placebo-controlled trial was to test the efficacy of the amino-bisphosphonate neridronate in pa...

I'll never forget the day I was diagnosed and told it was incurable. I had no clue what I was up against. Great article and site to follow.

https://themighty.com/2016/11/being-told-theres-no-cure-for-my-illness/?utm_source=Facebook&utm_medium=ChronicIllness_Page

What It Feels Like When You’ve Been Told There’s No Cure "The acceptance of not having a cure comes slowly."

https://l.facebook.com/l.php?u=https%3A%2F%2Fthemighty.com%2F2016%2F09%2Fthings-people-with-chronic-diseases-want-healthy-people-to-understand%2F&h=ATNg_q6UzbM58XkefIuue3DX60BHWQnt5GpvaKRpdZoxBW0tE1BmT6lHLFAFyhrsHBXtZBFLrE_9POrG1j29Sdd5tbtaqlCjmb045R_mYTJudqw_a4F_wJljixGK6QAyqQ2Lsg&s=1&enc=AZPV-juHPjmP_tvMuhbrT1Netz4JXBIqmWZ7Fsn8e3vEfMVcVydwVSzM-ovQdoJvtYqnHzH6Ag0YLPPTDQGlK-VL

5 Things the Healthy World Should Know About the Chronically Ill World 2. "We feel like we have to pretend."

Great article

FDA Designates CRPS Drug as ‘Breakthrough Therapy’ By Pat Anson, Editor The U.S. Food and Drug Administration has designated an experimental drug as a potential breakthrough therapy for Complex Regional Pain Syndrome (CRPS), a chronic and disabling…

I wanted to let the people of my page know that I won't be readily available for a while. My mother called me today to tell me she has cancer. I need to make sure my brother and I are available to her at a moments notice. I will keep tabs on my page, but I ask for your understanding at this time.

Thanks,

Carrie

So today marks one year since my last infusion in Bologna, Italy. Time does fly for sure. I want to thank everyone for liking, sharing, following, and asking questions along the way. Your kind comments have meant the world to me. When I was diagnosed I was angry and it was only the beginning, I had no idea of what time would do to me with CRPS and had never heard of it to be honest. I like most others had tried everything that was offered to me with hope that it would at least help this incurable pain disorder. I contemplated even the worst at times thinking my family would be better off. Thankfully, they showed me support and understanding to keep trying. So for those that are new to this page, I have posted monthly about how I am doing and how the Neridronate has worked for me. Once again, we all suffer so differently from the same disorder and no two people will have the same results. I will always do my best to respond quickly and answer to the best of my ability.

Its still so surreal what Ive been through. After returning from Bologna, I just felt like I was given CRPS for a reason and I had to figure what that reason was. I believe helping others know they have options and someone to ask questions of was the best way for me to continue to fight against CRPS. The first person I helped I did so while still in Bologna. I started this page several months after returning and I made a promise to myself that I would always post the good and the bad. People had to know that this might not work for them and that Neridronate is NOT A CURE. We will get different results and feel different things. I made sure to tell people to give the Neridronate a chance to work. We have hurt so bad for so long we want to see results fast. I respond that we have suffered and our bodies are so used to dealing with such pain we have to give our body that time to rest, relax, and time to work against such a horrible disorder. I know its easier said than done. I was there once as well. This past year has been the hardest of my life. Even harder than my years with CRPS. Knowing that I could have some relief and waiting is like a sick game. The times we live in where we get everything NOW make the road after Neridronate treatment a struggle to say the least.

Today, a year later I would say that i am 90-95% in remission. When I left for Bologna, I was taking 3600mg of Gabapentin daily, 40mg of Baclofen daily, and Vicodin 7.5-325mg twice daily. How one earth could i still function was beyond me, but i did. After returning and meeting with my pain doctor, we decided to SLOWLY start decreasing my medications over this next year so I could really tell a difference after the Neridronate. That was a scary thought because even with all those meds I still had horrible pain and allodynia/hypersensitivity. My doctor and his staff were so supportive and they did a great job! I am blessed to say the least for them letting me taking charge of my situation. They have also looked into all the information I gave them about my trip and Neridronate to possibly help others. Today, I take 200mg of gabapentin at night, I switched from bacolfen to tizanidine 4mg and I take that at night. I still continue to take vicodin on the days i don't work. I am also taking potassium and magnesium supplements. The reason I take what I do is because I have been left with a different type of pain/issue. After the Neridronate, I was left with muscular pain. Muscular pain like when you have a charlie horse that doesn't want to go away thus adding the potassium and magnesium that aid in muscle relief.

This summer I was able to enjoy the fireworks with my family and not hiding under the covers, medicated. I am back working out in the gym several days a week. I started working out only when I felt it was time, no one else had any say in that for sure. It was about 6 months after returning and it was a slow process. I am back working in the ICU doing 2-3 12 hours shifts a week. Never would i have thought that would be possible.

Now, don't get me wrong, I still struggle and still have pain.

The weather here in Indiana is starting to change, A LOT. I had another flare the other day (3rd since returning from Bologna) after several days of rain and increased barometric changes. How bad is it that Ive downloaded a barometric gage to my phone. My recovery time is still about an hour give or take. I make sure to take my medicine that Im still prescribed and and lie down. The flares are pretty much come on as quick as they used to with me noticing the rash I always got. The muscle pain that I currently have definatley becomes very intense and i become really weak. The flares still drain me pretty bad. Until recently that was all the flare was. The last flare was a bit more as it now included little bits of burning. These bits of burning were random over my right leg in little spots that lasted maybe a second or two and were gone. I would say with that flare there were about 4 or 5 spots that had the burning and that was it. Since the last flare and the weather so NOT being my friend, ive noticed random times of little bits of the same burning for just a second. It happens so quickly and its absolutly nothing like before. I dont have them everyday, but i do have them. Once again I am open and honset with what I go through so people can understand that this isnt a cure and we can still have issues.

I will continue to post as I go along in this process and answer questions. I hope everyone someday can have access to the choice of Neridronate infusions and get some relief that allows them to get back some level of their lives that they have left behind.

Once again, thank you for all of your support!

Sincerely,

Carrie

Hard to believe that my last infusion was a year ago today. So happy with our decision to go to Bologna