Experiences with plaquenil?

I take Paquinil but not for SS. I take it as a treatment for arthritis. I don't see that it does anything for dry eyes are dry mouth. I know that joint pain is also part of SS but since I already have two diseases that cause joint pain I wouldn't know one from the other. And frankly I'm not sure how much relief I'm getting with it. Doesn't seem like much. but I don't have any particular side effects from taking it.

I tried it but had the side effect of sweating, especially on the upper body/chest/abdomen, which I found more uncomfortable with the dryness I have come to know and can "treat". For me it was a no, but others will tell a different story (as is the case with SS). You will need to give it a good try and then decide for yourself. Good luck.

I understand your concerns because I felt that before I started taking it this July. I decided to go ahead and take it as it supposedly helps stop organ damage/ disease progression. They have no idea why it works. I can tell you I have no side effects except for hair thinning, but that could be from the disease itself. I can tell you I have virtually no joint pain right now, other symptoms still bad, but like other responders I’d give it a try. I take 200mg daily. Hope this helps you make your decision.

And it’s hard to say if it works or not. How much worse would I feel if I haven’t been taking it? No way of knowing.....I would take it. Again, I totally understand your misgivings as I felt the same way before filling my prescription....I really would give it a try. My side effects are minimal. Let us know what you decide to do.😀

I started plaquenil about 8 months ago. Before that I was bedridden. I also have fibromyalgia and cfs but the plaquenil did save my life. It did not make me normal of course but I can do a lot more now than before. I don’t have any side effects and even if I had a few it would still be worth taking. At least for me. You never know til you try it

Hi snail, I've been on Plaquinil for over a year. I'm a mess! I have Lupus (SLE), RA, Sjogrens, Small fiber neuropathy, Scoliosis, Degenerative disk disease, arthritis in lower back, Fibro myalgia, COPD, and now carpal tunnel too. I have been sick for about 15 years. Before Plaquinil I was in so much pain, even though on 240 mg Morphine a day. I mostly laid in bed all day crying. I hesitated to try "another" pill! Especially since they said it could take a few months to work, but I did try it and I thank God everyday for this medication! It has literally changed/saved my life! It did take about 3 months to start working, but once it did I had less and less pain daily. It hasn't taken away all the pain and stiffness but it has taken away about half, and with me suffering so bad, half is a lot! I no longer lay in bed all day or even cry from the pain. I'm still on the Morphine and always will be, but let me assure you that Plaquinil can be a life changer for some people! I have absolutely no side effects and not sure where you heard there's a lot of them because the only one the doctors worry about is it can cause damage to your vision, low risk, but it hasn't on me. I recommend Plaquinil to anyone with immunodeficiency diseases! Especially those who are also suffering with chronic and/or severe pain! Best wishes to you now and in the New Year!