Please share your experience on hydroxychloroquine/Paquinol

@annpeters after I was finally able to taper down the prednisone appropriately and evaluated by my new rheumatologist at Mayo. I am now on the flutamide 20 mg seven days a week, Humira injection once every two weeks Tylenol, and I take NP thyroid medication for hypothyroidism, medical cannabis lotion, I do regular infrared light therapy and Gammagard infusions monthly. Hope it helps.

Correction, that should’ve Leflunomide.

@kmg218 if you would like to try a more experienced rheumatologist, here is some information that could help.
GARD. Genetic and Rare Diseases Organization
https://rarediseases.info.nih.gov/
NORD National Organization for Rare Diseases
https://rarediseases.org/
These organizations keep a list of doctors who specialize in rare diseases. Call them and find out if your state has one of the docs!

@becsbuddy Thanks!!! I will check all this out....

I’ve been taking hydroxichloroqine for a month after diagnosis of “pseudogout” in my hands. The fingers and joints in my hands have swollen and it’s very difficult to manipulate them. There is joint damage.
I wonder if my initial dx of RA was accurate as I haven’t landed on a med that works for any period of time. I’m trying to get an appointment with Johns Hopkins arthritis center to confirm the dx but there are no openings.
The hydroxychloroquine worked well the first two weeks but seems to be tapering off.

Tried hydroxichloroquine for 90 days did little to nothing to stop my RA

I am 6 weeks now on hydroxychloroquine. I was changed 6 weeks ago from methotrexate because I wasn’t seeing any improvement after 9 months. Plus I was getting UTIs and my hair was falling out. So far I haven’t gone backwards and I do see less swelling in my ankles. I am also taking 2.5 prednisone daily. Next visit in November I hope to start weaning off prednisone. I know the drugs work different on people but so far this past 6 weeks I am hopeful this is the right drug. Doctor said I need to try for at least 3 months

@2brussels I was diagnosed with CPPD, also called pseudogout and pseudo rheumatoid. I started plaquenil 6/5/2026 and haven't had any side effects. It takes 3-6 months to start working. Up to 12 months, I've read. I have chronic CPPD so I don't swell up like you do. X-rays will show the crystals of CPPD, also an ultrasound or aspiration of the swollen joint. I was misdiagnosed for approx. 14 years. You have to find a doctor/rheumatologist that has experience with the crystal arthropathies. Not all do. My third rheumatologist diagnosed me. Good luck and let us know what you find out. Reiterating...the plaquenil takes months to work and you need an eye exam yearly.

@beverlyjenen at least three months to even begin to see improvement. Did you get your eye exam? Have you had your thyroid checked? hyperparathyroidism is one of the causes of CPPD and it causes hair loss too. Why are you taking plaquenil/hydroxcholoquine?

@rlchn full benefits take months. Hydroxichloroquine is SLOW acting. If you continue you should talk to the doc about your eye exams.