1. < Polymyalgia Rheumatica (PMR)
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Plaquenil (Hydroxychloroquine) risk for me

Posted by pmrsuzie @pmrsuzie, Feb 20 1:26pm

Plaquenil has been suggested to me by rheumatology a few times especially when I was experiencing hand problems with xrays revealing cppd. I now had pmr , OA and cppd. When reading about plaquenil, I learned it could cause a retina problem.
I was told by opthamology many years ago that I had AMD - macular degeneration. Five years ago I visited a retina specialist who thought I had macular dystrophy. I live in Pittsburgh and the University Medical Center has a Vision Institute. They have a retinal dystrophy clinic and I qualified for a visit with the retinal dystrophy Dr because of my diagnosis. Last fall I had extensive testing. The diagnosis is adult-onset vitelliform macular dystrophy (AVMD).. I told the Dr I had declined plaquenil treatment from rheumatology. My rheumatologist was sent a letter stating that he "recommended against plaquenil intake as the existing condition can have an additive effect to plaquenil toxixity".
So, officially, no plaquenil for me.
Am very lucky to have accessibility to this Vision Institute. Opthamology, retina specialists, optical, urgent care all in the same building.

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mcarso | @mcarso | Feb 21 6:56am

I am also from the Pittsburgh area, been treated for PMR for several years the first year was the usual prednisone treatment. Afterwards I been on Hydroxychloroquine (HCQ) for 2 years, 200mg a day. In my case it helped no flare ups, but I had no existing conditions. I also have no side effects from the HCQ. Good luck, God Bless.

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gmdb | @gmdb | Feb 21 4:28pm

Very helpful post. Shows the importance of getting a baseline assessment of eye health when starting hydroxychloroquine. For those who have no existing conditions, there is some evidence to suggest that limiting daily hydroxychloroquine to 5mg per kg of lean body mass will reduce side affects. There is even a dose checker app available to help caculate dosage. Although lean body mass is a bit of a tricky concept.

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