Option of trialing anti-rheumatic / immunosuppressant drugs

[InitialConditions]

I'm under the care of an NHS rheumatologist, rather than an ME clinic or something of that nature.

I'm still not entirely sure of his opinion of ME/CFS. He's a rheumatologist so I guess he primarily sees people with arthritis and other autoimmune diseases. He did mention GET once (and I informed him it was likely to be dropped from the NICE guideline).

I trialed a shot of depomedrone last winter. He thought it was worth a try to see if there was any response. I can't say there was, but it was also quite a hectic time; I had my second covid jab, and then caught a cold at Christmas which reduced my functioning for about a month.

He's now given me the option to trial some anti-rheumatic / immunosuppresant drugs, again mainly to see if there is any response. The three he mentioned are hydroxychloroquine, azathioprine, and methotrexate. I understand the latter two are quite strong drugs.

I take quite a conservative approach to my illness, but I'm also at a stage where I really feel like I need to try some medications. I am aware that there is extra risk of catching viruses etc whilst on these drugs, so that is also a consideration.

So, has anyone any experience with these medications, whether they were used off-label for ME/CFS, or something else?

Also, I would like to get your opinion @Jonathan Edwards on these drugs, if you don't mind, and ask whether, for example, one might be a better option for a trial of this type of drug.

 

[Adrian]

I've heard of people taking some steroids (can't remember which) that they said helped but there can be bad side effects.

 

[InitialConditions]

I've heard of people taking some steroids (can't remember which) that they said helped but there can be bad side effects.

Yep, that's another issue: any benefit might only be sustained with long-term use. Not a long-term solution, really.

 

[Kitty]

The only anti-rheumatic I've used is sulfasalazine, which is at the milder end of the spectrum. It's used to treat psoriatic arthritis among other things. I think my ME is better since I started on it, and I've heard one other person say the same, but obviously we can't be sure.

I don't have problems with sulpha drugs, so the side-effects were minimal. I kept getting a headache for the first week, but literally nothing except neutropenia showing on my blood counts for the last 10 years. It's one of the drugs I'd be willing to try speculatively if I weren't already on it, as the risk profile isn't enormous as long as you have healthy kidney and liver function. You'd probably need less than a year to see any effect on your pattern of illness over a reasonable period.

I don't know whether anyone would be willing to prescribe it, though, as there have been no trials as far as I know. There probably never would be, as it's apparently been around since the 1950s, so there'd be zero profit for a drug company in finding a new use for it.