IL1 ANTIBODIES & CRPS - STUDY LEADS TO POSSIBLE NEW TREATMENT

A recent research study done in Liverpool by Andreas Goebel involving IL1 antibodies has lead to the discovery of a new drug/treatment called Anakinra. It is an autoimmune drug. During the study, researchers were able to reverse CRPS like symptoms in mice. They are now expanding their study to humans. I love hearing great news like this!! Check out this video for more details.
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[@Wanda247pain]

This can also explain why I am responding well to a short prednisone treatment when my CRPS is in a flare-up. My previous family care doctor and current fcd (which is my only doctor right now) have both been investigating CRPS, Dystonia and EDS for my sake and that of their other patients. In a new case both are able to make a preliminary diagnosis and then start the treatment process with a vasodialator and acetylcysteïne mixed with DMSO crème since here in the Netherlands that still is the starting point. But after we discovered by accident that I responded very well to prednisone in a flare-up, both have begun to take that one into consideration for new patients as well. My last pain-management doc was not surprised when he heard that. It gave him and me more reason to believe IViG could be truly helpful for the CRPS community, his colleague had done a research study with IViG years ago but the study included both CRPS 1 and 2 patients and CRPS 2 was before known as causalgia which is caused by nerve damage, not a simple tissue damage like in type 1 where no nerves where damaged in the original onset but get damaged by the inflammation of the onset area. They were hoping back then, that was in 2016, they could do another study but this time with only CRPS 1 patients included. But so far nothing has come from it unfortunately since a part of the medical community here also still believes it's nonexistent but purely in the mind of patients... Some doctors are truly still living in the past even though all that research has proven time and time again that it is a physical issue. So while some doctors here are on the forefront of CRPS research, some stay behind in a past we would rather forget it ever existed. A past where the only treatment you would get is psychological and not physical.

[@anking9664]

Hi dear ,please write your treatment ,what you take when you have sever pain .please write because i took many medicines and i have no relief in pain .thank you.

[@Wanda247pain]

@@anking9664 My current pain management consists a combination of opioids : Fentanyl patches mainly and both long working oxycodone with naloxone (to help my gastrointestinal tract battle with the obsipation from opioid use) and fast acting oxycodone. But I also use Lyrica and ketamine injection fluid but orally not via injection. It doesn't take away my pain completely but it does lower my pain levels from a constant 10 to about an 7. I could increase the dosages of all the pain meds but I don't really want to. I'm 37 and hope to be around for at least another 30 odd years, so I'm careful not to increase the painkillers too fast so that I will be able to use them for as long as possible. In the past I have been treated with tramadol and Neurontin (gabapentine) as well as most NSAID meds combined in all sorts of different combinations and also together with paracetamol and codeïne. The war on opioid use is worldwide and I see and hear about the effects it has on people with CRPS from all over the world. It is getting harder and harder to treat our extreme pain if you start to need opioids if every other pain management option fails. And that feels so unfair. Like we want to use them for fun. NO WE NEED THEM TO HAVE SOME SORT OF LIFE! Not just trying to survive but being able to live, even if that is just a little bit. I hope you will find a way to deal with everything and remember that I'm going trough this thing for 30 years now so I've had all sorts of treatments over the years. The only constant has been deep tissue massages 2 to 5 times a week on my limbs, back and neck. I'm now at 2 times a week and it still helps my circulation so that's why I don't want it to stop even though it hurts like hell every time. But that extra pain only lasts for an hour total and that is tolerable for me. Take care and stay safe in this Covid-19 world.

[@anking9664]

@@Wanda247pain thank you so much for your reply.i understand what you want to say.but please write how you manage with flares of pain and you forget to tells about prednisone when and how you administerit .

[@Wanda247pain]

@@anking9664 When I feel I'm having a flare, my gp prescribes a 10 day course of oral prednisone tablets. 1 a day for now at least. We hope to stay on a low dose for a long time since I also have to take prednisone for lung infections and bronchitis. That's actually how we found out that the prednisone did work for a flare. A couple of years ago I had both a flare and a bronchitis and the prednisone helped me to get rid of both. I'm at 30 mg per day for 10 days now but that might increase with time...

[@anking9664]

@@Wanda247pain thank you and take care.please write if you get to know somthing more in treatment Actualy i want to share onething more that is i saw a vedio of dr katinka in fayettevilli Arkansas .on you tub .she is treating patient maualy by vagus nerve please see her vedio and share if you find something good.

[@TheJustonemore]

I’m thinking of a nuro modulation testing for my CRPS.glial cells get blocked as they do which also do when they put you out,but it needs to last. 2nd portacath inserted for next infusions