Overreaction to HCQ, what next?

Posted by cptrayes @cptrayes, 4 days ago

I think I've had an extreme response to hydroxychloroquine. I was diagnosed in April with palindromic rheumatoid arthritis and put on 400mg of HCQ. I found out this was 21% more than the dose that was safe for eyes for my bodyweight and I was furious as I have glaucoma. I've been testing my red vision carefully and seen changes so I've now refused to take it. I also got panda eyes with hyperpigmentation and look like I've got lip liner on. That started before 3 months. The effects were amazing in removing all my signs of vasculitis, tiredness and joint pains, but I'm not paying for that with my eyesight! My blood scores crashed, CRP from 58 down to 0.6 for example.

I'm going on to methotrexate next, should I be worried that I'm also going to be super sensitive to that? What sort of dose should I be expecting to start at, I'm 140lbs max.

I'm UK based, if that matters, and I don't trust an NHS rheumatologist whose already overdosed me on HCQ and tried to start me on methotrexate in addition to HCQ when my bloods were in normal range and I was symptom free.

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warner68 | @warner68 | 3 days ago

I have been on that same dose of HCQ for more than 6 years for my lupus, with no issues. I just recently have a retinal scan and all was clear for my eyes, no signs of toxicity. I also was on methotrexate injections. It was working great, but then I had a breast cancer diagnosis, and the doctor took me off that immediately in 2018. We switched to Leflunomide (brand name Arava) an that has been working fine with no issues. I might suggest finding another doctor that you trust, if that is an option. Wish you the best.