Since it seems rheumies are getting adventurous about using various DMARDs in PMR even though there is no good evidence for their benefit, I thought I would pass on this warning about hydroxychloroquine put up by the incomparable Paul Howard at LupusUK (it is used a lot in lupus). Most rheumies will tell you it has no side effects. MHRA beg to differ. It also has risks associated with vision - you need regular eye checks to be safe.
MHRA drug safety update: Hydroxychloroquine - PMRGCAuk
MHRA drug safety update: Hydroxychloroquine
Thank you. 😳
I was put on hydroxychloroquine for my vasculitis because it was "good for the small arteries". I was doubtfuI and didnt start until I had had a retinal scan from the optician who then monitored the back of the eye initially every 6 months. There was no deterioration, but eventually after a few years, I said that I didnt feel it was worth continuing, and the same rheumatologist just agreed to stop it....not sure there is any evidence apart from in Lupus.
I’ve always been aware of this as it was going to be a consideration for me when they stopped my MTX due to my Liver Issues but thankfully they were resolved & l was able to continue on MTX
I have been taking it for about 3 years now. I had eye tests at the hospital and was told it was safe for up to 5 years. I have finished pred for about 2 months now , the Rheumy has suggested to consider stopping it in 6 months , perhaps taking just every other day , then stop. Thanks for this , it has made me aware about combining it with those particular antibiotics .
I've just started on it so that will be useful to read thank you. Two weeks in and no sign of depression or anything. I'm willing to try anything now to reduce the steroid dose and chose this ahead of MTX. I'll give it 3-6 months and see if anything happens, as SM said it's worth a try, everyone is different and it may just work for me even if it doesn't work for others. Lef did nothing. I asked my eye consultant about it and he said it's worth a try and review in say 6 months. If it has an amazing effect they will try and monitor my eyes for toxicity but with all the other things going on with my eyes (I have RP) it'll be near impossible to he said. One step at a time, I'll see what the next 6 months bring.
I have been on Hydroxychloroquine for over 30 year's now, with out problems x
In 2014, during a significant flare for PMR /RS3PE, I was prescribed Plaquenil. I took for 60 days, and stopped taking when It caused extreme light sensitivity. Had to wear sunglasses inside the house. Plaquenil stays in the system for 30 days, if I remember correctly. It did nothing to mitigate my symptoms. No long term negative side effects. Best of luck to all.