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Hydroxychloroquine side effects

Posted by jonesc @jonesc, Jan 19, 2025

Hi! My name is Candy and I’m looking for some pros and cons of taking hydroxychloroquine. My rheumatologist gave me a paper explaining a ton of very scary side effects and honestly, I’m afraid to start it. Does anyone have any experience starting out treatment with this drug and do the benefits outweigh the side effects.

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victoria7 | @victoria7 | Jan 23 6:11pm
In reply to @naturalcranberry "@cptrayes Well, I’m sorry to hear that you’re unhappy with the care that I’m receiving. I,..." + (show)
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@cptrayes Well, I’m sorry to hear that you’re unhappy with the care that I’m receiving. I, however, am incredibly happy with my care team and the balance we’ve struck between meeting my health/family planning goals and choosing medication to manage RA symptoms.

My care team has been extraordinarily mindful about treatment and monitoring for a variety of reasons, not least of which is that I have been ttc, pregnant, or breastfeeding for my entire treatment course.

I do sincerely hope that concerns over retinal toxicity don’t deter folks desiring to grow their families from at least trialing HCQ to see if it works for them - it’s one of the few DMARDs that’s considered safe for pregnancy and breastfeeding due to low/virtually no transfer of the meds across the placenta or into breastmilk. It’s also been great since it’s an immune modifier and not a suppressant, given I’m constantly exposed to childhood illnesses.

I’m sorry to hear so many folks have had retinal issues as a result of HCQ, but it is my understanding it’s considered a rare side effect in folks under 60 without other risk factors regarding kidney and liver function.

I’m sure I won’t be on it forever, but it’s been great for now! I also know quite a few other folks my age that have been on it during childbearing years and done well (including having successful pregnancies).

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@naturalcranberry @cptrayes
I have great care, both Rheumatologist and Corneal Eye Dr. and Retina, and HCQ has rare problems, yet I would not chance skipping testing. The American Ophthalmology Abstract on this topic was published in 2024 and its is not resolved to date and each Doctor will have an opinion. Being very proactive, my Rheumatologist at a large Medical University knows how sick I can be with a lupus flare and continual sjogrens. Biologists were presented yet once I researched methotrexate...if tolerated and help with the RA.
A bi-anual Sjogren's Organization meets with the pro's from the nation. (John Hopkins is key, but eye specialist, skin, 3 days of education assure the large audience, mostly females - young to older and were concerned more of hair loss. Eyes are to be closely watched for vision impairment. Yet, not many choices. less is more,

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jtrahan | @jtrahan | Jan 26 10:19am

I have taken Plaquenil for Lichen Planopolaris, (LPP), an awful scalp variant of Lichen Planus, for at least two years with no relief. No ocular problems, but eye doc claims it takes years to damage the eyes. Few docs besides derm docs know about LPP. I am now trying Otezla but no good results so far. It is an off-label drug for psoriasis, but I am desperate for relief from LPP. Has anyone found a treatment beyond meditation for stress and Gabapentin for nerve relief?

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