Hydroxychloroquine vs sulfasalazine vs methotrexate experiences?

Posted by yellowfleurs @yellowfleurs, Feb 22 8:10pm

I am starting on hydroxychloroquine for tendonitis and other autoimmune type symptoms. Well my rheumatologist mostly prescribed it for the tendons, but I am hoping it helps my other issues, too. I made another post about those symptoms I have experienced. I don't have a firm diagnosis other than probable seronegative spondyloarthropathy.

Anyways I am curious what symptoms HCQ helped you with and did it take some time to adjust? For those who also tried sulfasalazine or methotrexate how did it compare? I was offered one of the three to try and decided to start with HCQ since it doesn't really suppress the immune system the same or require repeat labwork per my rheumatologist.

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Profile picture for dianedonohue @dianedonohue

I have Sjogren's Disease and Lupus and I started HCQ last April 12th 2025 and after approximately 2 and 1/2 months I noticed a lessening of pain from Sjogren's Disease. However, as time went by I noticed that I was becoming very anxious. On September 14th 2025 the anxiety was so severe that I stopped taking HCQ. This medication has a long half life when it is in your body so it can take up to 50 to 60 days for it to completely leave your body. Somewhere between 50 to 60 days the anxiety started to fade. This was probably the worse experience in my life as I couldn't be alone because of sheer terror. I felt as though I had an psychotic episode and would never be the same person as I previously was. I saw an extremely experienced acupuncturist who helped, I practiced acupressure, I sat on my elliptical for one hour a day, I took one drop of a mild marijuana tincture and slowly I returned. That was a nightmare. I have a corneal specialist that I see at Mass. Eye and Ear Boston and she told me that only one of her patients actually became totally blind after taking it for an exceedingly short time ?3 to 4 months perhaps. Hope this information helps you.

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@dianedonohue thank you for sharing your experience. That had to be very scary. It sounds like you handled it well, but that had to be a miserable side effect. I am on the fence about starting the Hydroxy. My optometrist didn’t sound too excited about it. I have histoplasmosis in my eyes. She said once the damage is done it is irreversible. I don’t want to damage my retina. I’m always that small percentage of people that ends up with the problem. I am miserable daily but not worth losing my vision. Just my opinion. Most of us here are probably in touch with how our bodies respond. I’m going with my gut and waiting.

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Profile picture for gypsyblue @gypsyblue

@dianedonohue thank you for sharing your experience. That had to be very scary. It sounds like you handled it well, but that had to be a miserable side effect. I am on the fence about starting the Hydroxy. My optometrist didn’t sound too excited about it. I have histoplasmosis in my eyes. She said once the damage is done it is irreversible. I don’t want to damage my retina. I’m always that small percentage of people that ends up with the problem. I am miserable daily but not worth losing my vision. Just my opinion. Most of us here are probably in touch with how our bodies respond. I’m going with my gut and waiting.

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@gypsyblue I'm worried about the eye risks as well. But then I was told the other options have more liver and immune suppression risks. Feels like you cannot win with these meds! Seems the eye risk is dose dependent which is why I started at half the dose. I would rather it help a little less but protect my eyes (although need to ask my rheumatologist if it will likely be completely ineffective at lower dose).

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I couldn’t take sulfa (allergic) or the Metho as contraindicated. Tried Hydrox but got terrible tinnitus. Called Rheumy and she said stop—could be irreversible. So sticking with low dose Pred for now which seems to work well for me. Also gastro did significant work up a couple of years ago, spent 6 months at his directions doing Low FODMAP. Found my triggers but what was better was getting off gluten as part of that testing and significantly reducing sugar. He stated likely NCGI (only because the blood panel on celiac came back negative, though I could have had as didn’t get endoscope while still eating gluten) which is also autoimmune and treatment is getting off gluten. That has helped me a lot with autoimmune diseases. Rheumy was aware of work gastro was doing. Anyway so far low dose Pred working for me and I know I was really lucky there. Hope you find one that works well for you.

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I took plaquenil first. It worked well for me . My Rhematologist at the time said
it was the safest drug he could offer me. That was 25 years ago. it began to relieve my symptoms in 2 weeks. However, back then they started you on a higher dose than they do now.
I was allergic to methotrexate.
I'm now on sulfasalazine with 5 mg prednisone. I don't have any bad side effects from it.

My daughter has sero-negative RA, diagnosis made because of our family history. My mother and I as well as one of my brothers all have RA.
She initially took MTX . They kept increasing her dose because she wasn't getting much relief. Her fingers looked like sausages.
She had to change Rheumatologists, and the new one put her on Plaquenil which is working much better. She said when she quit the MTX, she began to realize how bad she had felt on it.

However, we all are different in what medication will work, so hard to tell which would be the best starting one for you.

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