I asked this a few weeks ago but then didn't have any internet. Has anyone else been put on Hydroxychloriquine for there PMR?
Hydroxychloriquine: I asked this a few weeks ago... - PMRGCAuk
Hydroxychloriquine
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Cyclone69
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Nothing has been proven to work except Prednisalone. Does your Rheumatologist suspect that you have Rheumatoid Arthritis? I would be worried and asking a lot of questions if I had been prescribed it. It has been tried for Lupus and even Covid but not PMR, as far as I am aware and was not effective for the above. It is a Malaria drug.
It is a DMARD and has been used as a “ steroid sparer”, though I don’t see that it’s helped me reduce. However, I also have Sjögren’s and it supposed to help with that.
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There is one person on the forum who has been put on HCQ and says it has worked for them - sorry, can't remember the name. It isn't routinely used in PMR as there are no good studies suggesting it may be useful even as a steroid sparer.
I think that was me PMRpro. According to my Rheumie my long term PMR has become Seronegative RA. I have now been on HCQ for over 2 years & am still taking 2.5mg Pred. I haven't had any flares in that time so who knows which is more effective? At least I seem to tolerate HCQ well & according to Trump I am protected from Covid 19!
I have been taking it for over a year now. My rheumy tried it as a steroid sparer. Down to 3 mg of Pred after 5 years of PMR. I had to have an eye test at the hospital when I first started taking it and they monitor my eyes supposedly every 3 years. Because of COVID , all consultations with my rheumy are over the phone which I never find satisfying. I often forget to ask something till afterwards. I have been absolutely fine on it though.
My doctor insisted I try it to get off the steroids. I was only on it 2 months (it takes 3 to fully kick in) before my liver numbers started skyrocketing. My doctor kept insisting I must have been drinking or taking ibuprofen to cause it. I wasn’t. The only change was starting the new drug. I choose to stop taking it and returned to my GP for care. Rheuly was also insistent I had seronegative RA and not PMR but that is another story entirely. lol
And ibuprofen doesn't usually cause liver problems - that's paracetamol!
I probably confused that! It could have been acetaminophen that they referenced. But I wasn’t taking anything else at all other than steroids!
Easily done - but he wouldn't be my doc for long. I take a dim view of being told I'm not telling the truth!!!!
It was the last straw! I discharged myself after that!
That shows a great deal of sense on your part!!!!
Hi ,I started on it but only lasted a week didn’t feel that great on it and had concerns so stopped it - have a friend who has taken it for RA for 24 years and she’s fine
I was out in it back in November 2018 after two years of PMR and just prednisolone. Think it was the typical case that I wasn’t tapering quickly enough in the medics opinions and had experienced a couple of flares so let’s try something else. I was starting to suffer from painful and swollen knees hence they thought perhaps I had sero negative RA. I tolerated it well other than a grumbly tummy but don’t think it made a blind bit of difference to my aches and pains. Methotrexate was being pushed but due to my very elevated liver enzymes I wasn’t keen hence the hydroxychloroquine.I stopped it over a year ago and didn’t feel any different hence my belief that it wasn’t making any difference.
As many of us know we get a lot of pressure to reduce steroids and when you’re feeling pretty rubbish you’re prepared to try anything.
