Any help on Hydroxychloroquine

[Petcut]

Had a telephone appointment today with rheumatologist and he’s suggesting I try Hydroxychloroquine as I have been taking Pednisolone for 4 yrs and I’m stuck at 4mg for a year now,every time I try to lower dose everything goes pear shaped,so any feedback on this drug would be appreciated.

[DorsetLady PMRGCAuk volunteer]

No advice on HCQ sorry, but how have you tried to reduce?

One of the slower tapers we always talk about and only 0.5mg at time? If not then maybe try that initially.

Selection of slow tapers here - plus a bit more info on when best to or not to try tapering -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Petcut in reply to DorsetLady]

Thanks for the reply,I’ve tried all the slow tapering and only reduce 1/4 mg and cannot believe what a difference it makes,but I will keep on trying,at my pace not the rheumatologist ha,having read some old posts on the subject I’ve decided not to try it

[DorsetLady PMRGCAuk volunteer in reply to Petcut]

Your pace..that’s all you can do.. and you aren’t unusual.. despite what Rheumy might think.

Good luck…

[PMRpro Ambassador in reply to DorsetLady]

UNusual????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

yep.. ta..

[PMRpro Ambassador]

Now you have posted you will see previous posts listed under Related Posts. WOrth a read.

There are a few people who have done well on hydroxychloroquine - one manages their PMR entirely on it and tangocharlie has been able to reduce a LOT, though from much higher doses. Make sure you have regular annual (at least) eye checks as the worst adverse effects is eye-related.

Personally, at 4mg I wouldn't be that desperate to try it, that is already a reasonable dose and about par for the course in our experience, But it may well be worth trying if really slow tapers as described by DL aren't enough. Your limitation will now also include the return of adrenal function as well as the PMR.

[Petcut in reply to PMRpro]

Thanks for reply,I only ever go down by 1/4mg and find after a couple of days I’m stiff and pain in all joints,I’ve read some of the old post from people that have tried it,and I’ve come to the conclusion it’s not for me far too scary