Its time for an update for CPS/CRPS/RSD patients.Back in Jan. 2012 Is when I first heard of Bisphosphonates for RSD. There was a clinical trial that had completed phase 1 and doctors were thinking that this was going to be a great promising new treatment. I looked at this treatment and the study and started realizing that there were many unanswered questions. They company was working on those questions and challenges and the trial moved on to phase 2 and and then phase 3. This past week I got word that the medication by brand was not going to be taken to market. Here is the actual press release explaining why they stopped the study. That the trials outcomes did not show that the medication was effective enough to be approved by the FDA, in layman’s terms. I have known participants and providers in each phase that this went through over the years. I have also known people who went to Italy for their version.
I was happy to know that options are being worked on, I am sad that this will not be one of them. But I am also happy that those patients who raise the funds to either go to Italy or were chosen to be in the USA trials had an option. A lot of patients put a lot of hope into this option and for them please know, there are better options coming down the line. Better information, better studies, better care for those of us living with Reflex Sympathetic Dystrophy, Central Pain Syndrome, and Complex Regional Pain Syndrome.
Here is one such study that was released in June 10 2019. Another medication that seems promising is Cefadroxil especially given the study recently released about the auto-antigens involved in our disease. This medication is not specifically for our condition. It is an antibiotic, but as researchers catch up to looking at a specific medication that will kill the auto-antigens we as patients carry, we can have great hope! Always talk with your providers about the side effects of this medication. I am not an influencer of this medication (it is generic), I just personally feel that it is hopeful for my community, and may try it myself one day, but have not yet.
Looking back as far as 2011, I was writing about the great news that anti-autonomic nervous system antibodies in CRPS patients were found and saying it can take 10 years to get an idea or new treatment to the mainstream. I am so happy to see the progress made by the scientist this year and since 2011’s announcement! There is great reason for HOPE!
