Hydroxychlorquinine

[bakingD]

Hydroxychlorquinine- after 3 years of PMR type symptoms and increased pain and stiffness have just been started on this drug - anyone had much experience of it??I got to 3 mg PRED but have been put up to 5 thanks for any advice

[PMRpro Ambassador]

Out of interest - does 5mg pred on its own help?

It isn't one of the recommended drugs for steroid sparers and is rarely used but there is someone on the forum who says he has been put on HCQ instead of pred who says it is working for him.

Have you had an eye check? Recommended before and during treatment with it.

[bakingD in reply to PMRpro]

Thanks yes had eye check a few months ago 5mg on its own doesn’t really do the job so will give it a bash - Rod Hughes recommended this rheumatologist so feel safe with him- he thinks it may help me

[PMRpro Ambassador in reply to bakingD]

Only find out by trying I suppose.

[bakingD in reply to PMRpro]

Thanks yes will let you know how I get on

[podo]

After 16 years on Pred, Rod Hughes said that my PMR had changed to Seronegative RA and put me on 2 x 200 Hydroxychloroquine (Hy). This was 2 years ago and I have now reduced my Pred to 2.5mg (was 5mg then). I haven't had any bad effects with Hy but not had an eye test yet due to Covid, this now due in June. I believe that eye problems become noticeable after 5 years on Hy. I am also watching this carefully since my Kidney function is a bit low and any additional medications are of concern. Anyway, no further flares in the past 2 years so that's good!

[PMRpro Ambassador in reply to podo]

I do know a lupus patient who developed problems well within 5 years - HCQ is used a lot in lupus. So it does pay to be careful.

[bakingD in reply to PMRpro]

Thanks for the info PMR pro I will be careful and good to be armed with knowledge

[PMRpro Ambassador in reply to bakingD]

I may sound a misery - but when you work on the worst case scenario you are less likely to be caught out

[bakingD in reply to podo]

That sounds good that you’ve got to 2.5 mg Pred - will give it a bash good to be aware tho of potential probs am having a blood test after 6 weeks

[Lochy]

Rod Hughes also put me on hydroxychloroquine as I was struggling with flares and as I had raised liver function tests didn’t want to start me on methotrexate. This was November 2018. I had eye checks and all was well. I stayed on it until beginning of this year when I felt it wasn’t making any difference as hadn’t been able to reduce my prednisolone any quicker. Also took leflunomide but gave that up in May 2020. That drug also didn’t aid my steroid reduction. Now started Sulfasalazine at end of January this year. Jury is still out!

None of the drugs I have tried have speeded up my steroid reduction. Only down to 7mg after 5 years. I’m tapering slowly despite added drug as terrified my knees swell which has been an ongoing issue only controlled by steroid injection.

I seem to be a mystery to my rheumatologist but I reckon I may just stick with the prednisolone and keep everything crossed.

Good luck and hope it makes a difference to you.

[PMRpro Ambassador in reply to Lochy]

"I seem to be a mystery to my rheumatologist"I don't get why they are so adamant PMR only lasts 2 years and tell any one who has it longer they are a "mystery". And if I had a fiver for every patient told they are "atypical" I'd be doing OK as well. And most of them - really not untypical of what I have heard over the last 12 years ...

[Lochy in reply to PMRpro]

To be fair my rheumatologist has said nothing about timescale of PMR. That was my GP. He now knows better, I don’t let him forget…

The mystery appears to around why I can’t taper very easily and why my right knee flares! Wish she would read this forum, it has the best picture of all the possible variations of PMR. She wants me to now have sero negative RA or inflammatory arthritis as well as PMR, hence the other drugs.

I just want to take fewer drugs and keep tapering my steroids slowly especially having just watched some of the you tube video about covid antibodies and immunosuppressed people like us, posted here today.

[PMRpro Ambassador in reply to Lochy]

When they work out the mechanism of PMR, I might accept them stabbing in the dark with any drug they can think of because one of them might work. My rheumy in the UK wouldn't have it was PMR at all (despite 15mg pred working a miracle in under 6 hours. He wanted me on sulphasalazine. I've tried methotrexate briefly - not prepared to feel that ill. Sorry. I had pred side effects I'd never had - and gained a kg in a month, had never happened with just pred.

But adding immunosuppressive after immunosuppressive - immunologists are really concerned about the long term effects.

[bakingD in reply to PMRpro]

Maybe if my symptoms improve on 5 mg pred I should just stick to that - after 3 years that’s not too bad is it?

[PMRpro Ambassador in reply to bakingD]

I don't think so - but I know a lot of doctors who wouldn't agree. Prof Dasgupta told us last year he often keeps patients on 2-3mg pred indefinitely as it reduces the risk of relapses - not a lot of difference, 5mg at 3 years, 3mg at howevermany years ...

[Lochy in reply to PMRpro]

I agree and it’s really hard for us patients who think we’re listening to the experts to decide what’s the best path. You have to advocate fairly strongly for yourself and we’re disadvantaged by not knowing the drugs or what they might do to us. It’s really quite challenging to deal with. As many on here have said you feel like a failure when you don’t respond as they expect. I’ve experimented with several drugs now so think I’m now relaxed about saying enough is enough……..whenever I next see my rheumatologist! 🙄