Hydroxychloroquine

[aviva2637]

Does anyone have experience taking Hydroxychloroquine in order to reduce cortisone?

[fmkkm]

Hi aviva,I have GCA, I took plaquinil one time and it did not agree with me. It comes with a heavy list of side effects, worse than prednisone in my opinion. I did not understand why the doc would prescribe a medicine that can damage your eyes when G C A can cause blindness, seems counterintuitive. I could not find any research to support treating GCA but that was 5 years ago.

[aviva2637 in reply to fmkkm]

Thank you forwardmotion .

[York54]

Hello, yes I have been taking it for about 18 months . My rheumy tried it as a way of reducing my pred. I had to have an eye test at the hospital and they will monitor my eyes in future. Long term use can affect eyesight , hence monitoring. I managed to reduce my pred to 3mg but have now been changed to hydrocortisone which I’m not getting along with at all.

[aviva2637 in reply to York54]

Thanks a lot,

[Lochy]

I was put on hydroxqchloroquine after two years of PMR. I’d been having a difficult time tapering and symptoms were not settling. I stopped taking it at the beginning of this year. I don’t feel any different and can’t work out of it benefitted me at all. Never speeded up my steroid taper. Had eyes checked regularly by my optician. No other side effects that I can remember.

My rheumatologist suggested that the drugs can often work in combination to achieve desired effect. No idea if this is true. But I think my rheumatologist wants me to have sero negative RA or an inflammatory arthritis as well as PMR. Don’t know your diagnosis or history but it might help, might not! Sorry can’t be off more help.

[PMRpro Ambassador in reply to Lochy]

" I think my rheumatologist wants me to have sero negative RA or an inflammatory arthritis as well as PMR"

This seems a common experience - as if PMR isn't "good enough" to deserve their attention. My last UK rheumy wanted it to be a spondyloarthropathy - despite no evidence of anything else in my history and a less than 6 hour response to pred. Mine was pushing sulphasalazine.

[Lochy in reply to PMRpro]

Indeed! Despite everything I read there is still a reluctance to believe that it can only be PMR if one struggles to reduce and be off steroids in a few years. Perhaps I’m the only PMR patient under her care in Edinburgh that struggles to taper!! I’m glad in some ways that she considers other options but my symptoms still seem more PMR than RA etc Meanwhile it is sulfasalazine for me at the moment and unsurprisingly I’m not sure it’s making any difference either !! I know what you said about piling one immunosuppressive after another but as always I’m considering my options. It’s tough and draining trying to be on the ball all the time…….

[PMRpro Ambassador in reply to Lochy]

They are much more relaxed here - methotrexate was mooted, tried and rejected as not for me. I'm by no means the only longtermer here but I am unusual in the dose I need - European rheumies seem far more willing to admit PMR can last a long time.

[aviva2637 in reply to Lochy]

Thank you Lochy

[Jolaine]

I took this medication about 3yrs ago for cristals in my joints.It did work then it was stopped because Brest said free of crystals but to be honest In think it has come back but.Rheumi.changed and her.thoughts different.

[aviva2637 in reply to Jolaine]

Thank you Jolaine .

[ignatz]

Just started on Hydroxychloroquine aka Quinoric 400mg daily 5/7 with 10mg/daily 7/7 Prednisolone at present. I seem to have even worse weeping eyes and runny nose, neither of which are known side effects. However eyes fully tested and free from likely steroid damage after 4 years of Prednisolone. May report further.........