Hi all could I please get some advice about Plaquenil? My rheumy as suggested this new med since I am doing quite well since coming off methotrexate. (Dr was not happy about this, but I stuck to my guns that the side effects far outweighed the med) what can I expect from Plaquenil?! Any side effects? I had all of the side effects from mtx in particular hair loss :( I am scared to take anything anymore after an awful experience with mtx!! Any advice welcome :) thanks in advance :)
Hey @A myRAteam Member! All lot of newly diagnosed patients are recommended to take plaquenil. I have been on the generic form of Plaquenil for 3+ years. with no side effects. I used to take 400 mg with food, but don't any longer just to get it in (I take so many pills, as so many of us do, that I need to spread them out.) It is one of the lowest-risk AI meds out there. The most concerning low-risk side effect is the infrequent possibility of plaques on the retina, which usually occurs after years of use. It can be reversible if caught early, so it is standard to do a visual field test, OCT, or other equivalient test every 6 months. I just had an OCT a week ago and my retina is in perfect condition at 49 yo!
Another infrequent side effect can be psoriasis, so it is not recommended for those already diagnosed with it.
On the flip side, I didn't notice improvement with it, but have learned that any med that slows down the progression needs to be weighed against the risks, so I am still taking it.
I also had hair loss on MTX, which I stopped because it wasn't working well enough early on. I also experienced that side effect on two biologics including my current med, but decided that it is worth it to stay on the current med. My rheumy decided to add Arava onto the list, which is similar to MTX, but statistically less effective, and lower risk than MTX. It made a huge difference for me and doesn't cause hair-loss.
On MTX, I also had frequent infections, stomach upset and diarreah, and maybe some other side effects I've forgotten about.
Finally, I trust my rheumatologist, so when he says I should try or stay on a med, I do. I learned that stopping a med that appears not to be working can result in a flare or worse symtpoms. In time, you will come to trust your rheumy's judgment or find another one. It seems like your rheumy is taking steps to balance the pros/cons.
I applaud you for doing your own research. We are our best advocates, and the leader of our care teams.
I hope this helps!
I tried Plaquenil with Methotrexate for 3 months, Plaquenil did nothing for me. Dr then put me on Orencia infusions with 10mg of Methotrexate, been on this for over two years and have been in remission for 14 months.
Plaquenil does help very well. You absolutely need to see an eye specialist on a yearly basis to have your eyes tested as plaquenil(quinine) affects them. Been on it for 8 years and I'm being weened off it now. Eyesight now much better and hair growing back stronger.(hair did thin out and was not as strong). Please keep on using your daily folc acid.
I'm also on both. I did start noticing hair loss. I started taking hair and nail vitamins and found a shampoo with biotin. My hair has never looked better and is growing!
I'm currently on Methotrexate and Humira ( both for over 5 years) with no side effects other than weight gain from the Humira. I was on plaquenil and naproxen together for about 4 years with no side effects but they weren't as effective as my current medications.
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