Our son has been diagnosed with palindromic rheumatism but is not responding to treatment? Anyone able to help?

[Rockhopper]

Our 27 year old son has been given a "working diagnosis" of palindromic rheumatism after nearly 2 years of extreme pain in varying joints round his body. He has tried Azathioprine, Methotrexate and Mycophenolate Mofetil, and Amytriptilene, all without success. The only thing that helps him are high doses of steroids (which they obviously cannot maintain for long periods) and HUGE doses of morphine. He is in constant severe pain and has put on a lot of weight. He also had a number of lesions on his face which makes him reluctant to go out in public.

Can anyone offer any advice, help or something positive that might help him?

Many thanks.

[MaryF Administrator]

Hi, I know a lot of us on here have a variety of autoimmune disease on top or our relatives do, but I think you do would better to find a specific forum to support him and yourselves with this.

I will put a few links here for you:

palindromic.org/pr/

facebook.com/pages/The-Inte...

palindromicrheumatism.wordp...

It may also be an idea to research LDN for this: It is not for everybody but worth reading up on: ldnresearchtrustfiles.co.uk...

MaryF

[SueLovett]

I am so sad for your son. I know we demonize steroids but sometimes they are the only thing that works. Can he not have them, reducing to maintenance dose?

I hope you can get some relief for him xx

[Rockhopper in reply to SueLovett]

Hi,

Many thanks for your reply....much appreciated. Xxx

[whatsreal]

I hope a solution has already been found for your son, but I figured I'd share my experience in case it helps.

I know this condition is radically different for everyone, but I want to tell you my protocol in case it could help someone. The one thing that helped me somewhat was Naproxen. A decent doctor prescribed it to me 30 years ago and it worked... mostly.

Years later, I found Aleve and it has been my saviour. If I catch the onset of the attack in the very early phases (before it becomes pain) and take 2 pills, it stops the attack (or minimizes it from an 8 on the pain scale to a 2 or 3).

Obviously you'd want to talk to your doctor since regular use of it can cause serious problems, but if it works you can't beat having a super cheap, otc solution.

HIH!