Please share your experience on hydroxychloroquine/Paquinol

Posted by annpeters @annpeters, Sep 23 8:28am

I was prescribed hydroxychloroquine while they try to figure out what’s happening in my system. I believe they’re thinking systemic sclerosis, but no clear answers at this point. Medication seems to have a paradoxical effect on me. Little bit frightened. Thank you so much for your responses.

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SusanEllen66 Susan McMichael | @SusanEllen66 | Sep 24 3:02am

@annpeters
Hi Ann, I have been taking it for about 7 years for arthritis pain, and discomfort from fibromyalgia.
I can’t speak about negative side effects at all.
What I do know is that if I stop taking it, my pain returns.

sillyduffer | @sillyduffer | Sep 24 5:09am

Hello
I was prescribed this to help with my Oral Lichen Planus. I had mouth ulcers, red gums, very sore mouth. Prescribed 2 2 100mgs in Feb 2026 - no side effects, and a positive result in reduction of mouth ulcers and soreness. Hope this helps you.

fairn | @fairn | Sep 24 9:01am

1 year on 200mg a day, 300mg on Wednesday and Saturday. I had some stomach upset for a couple of months but in 3-4 months the inflammation and debilitating pain in my lower spine went away. I have seen improvement in my other joints as well. I still have real fatigue and dry eyes, but less pain=more energy so it's better. I have my eyes checked every 6 months.

carolah70 | @carolah70 | Sep 24 9:45am

This is my second time trying plaquinol for r a. First time I had severe gut pain from it, then dr prescribed all the other kinds of r a meds. I can’t take any biologics as I am currently being treated for 3rd cancer diagnosis in 10 yrs. And cancer care drs do not want me on anything that will suppress my immune system.
R a dr found a coated plaquinol for me to try but after several months I am still having severe foot pain and wrist pain. Not sure what happens next… I think I need to concentrate more on dealing with this 3 rd round of cancer in 10 yrs. I will probably just get a scooter to get around easier and stick to ice packs when pain gets severe. Pain doesnt bother me as much as “the fatigue”!! Still… praying for a miracle drug for all the RA sufferers🙏💗

annpeters | @annpeters | Sep 24 11:53am

In reply to @carolah70 "This is my second time trying plaquinol for r a. First time I had severe gut..." + (show)

@carolah70 i’m so sorry to hear you’re dealing with all those issues! Your post has helped me realize that I have to be grateful. I am sending good thoughts and prayers your way. Blessings…💕🙏

bswpb | @bswpb | Sep 24 3:05pm

I did well for a few months, pain got better then it made me sun sensitive and I got N itchy rash. Stopped it and symptoms went away.

circusbait | @circusbait | Sep 24 3:32pm

I've been on it for 10 years. The only consistent side effect I experience is nausea and this only occurs if I take it on an empty stomach. It took a few months to start making a difference, but has been helpful since. I have taken short breaks from it over the years, but find the MCTD is better managed when I take it.

annewoodmayo | @annewoodmayo | Sep 24 7:34pm

I had good results for about 3 years for arthritis. My rheumatologist made me go to the eye doctor to check my field of vision. Eye doctor had me return every 6 months while I was taking it, but I do have a family history of eye disease.
Good luck to you! Blessings!

Becky, Volunteer Mentor | @becsbuddy | Sep 24 9:53pm

@annpeters Welcome to Mayo Clinic Connect! A place where everyone connects and help each other.

cdianeb | @cdianeb | Sep 25 5:04am

I took it for Lupus but after 7 days I had a terrible reaction. Rash and itching so badly that I had to take warm showers and apply cream every 2-3 hours. After trying steroids and other drugs the doctor put me on Ativan (I think that’s the name) and it cleared up. I don’t take anything for Lupus now. The alternative was methotrexate and I don’t want that. Good luck to you. 🩷

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