Any help on Hydroxychloroquine: Had a telephone... - PMRGCAuk

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Any help on Hydroxychloroquine

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.

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Petcut

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14 Replies

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DorsetLadyPMRGCAuk volunteer25 days ago

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...

Petcut• in reply toDorsetLady25 days ago

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

DorsetLadyPMRGCAuk volunteer• in reply toPetcut25 days ago

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

Good luck…

PMRproAmbassador• in reply toDorsetLady25 days ago

UNusual????

DorsetLadyPMRGCAuk volunteer• in reply toPMRpro25 days ago

yep.. ta..

PMRproAmbassador25 days ago

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 toPMRpro25 days ago

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

greenveggies24 days ago

I have RA and never wanted to take mexotrate . I discussed hydroxychloroquine with my doctor who is very open and I researched myself. The downside is the risk for eyes after a few years apparently and I was scared as the older one is the more risks we have with eyes. I am going to start Ivermectine having finally managed to get hold of enough to try.

krillemy• in reply togreenveggies24 days ago

Ivermectine ? Is that know for anti-inflammatory efftects, sounds interesting.

Petcut• in reply tokrillemy24 days ago

Sorry I have no idea what Ivermectine is.

PMRproAmbassador• in reply toPetcut23 days ago

healthline.com/health/iverm...

It is an antiparasitic drug which was touted for Covid without any grounds. It has seemed to have dome antiinflammatory effect in rheumatology when used in rats but there is nothing to support its use in humans.

Petcut• in reply togreenveggies24 days ago

Thanks for reply,are you taking prednisolone ?I will read up on Ivermectine

Petcut24 days ago

Thanks for that info all very interesting for me to think about

SophieMBPartner23 days ago

We are turning off comments on this thread.

Self-medication of any drug, especially one unlicensed for what you are using it for (as with ivermectin) is potentially dangerous and not something we encourage.

All decisions to try new medication should be made in consultation with your doctor or pharmacist who will be able to advise on interactions with your other medication and other considerations you may not be aware of.