I've been taking Plaquenil since I was first diagnosed with Sjogren's in October. I take 200mg twice a day, so 400mg total daily. I haven't had any side effects whatsoever. I think it might have upset my stomach a tiny bit at first, but it wasn't that bad and it went away pretty fast. The medicine can take several months to start working, but I swear I could feel a difference with the fatigue within about 2 weeks. Before I was taking medicine, I was absolutely miserable. I felt like I was dying. I was so tired all the time that I was pretty much bedridden...I could only leave the house sometimes for 30 minutes or an hour at most, and then I would have to come back home to lay down. But after I started taking the Plaquenil, I was able to be up a little bit longer each day and I didn't have to take as many naps. I was able to get out and do things again and actually have a life. It also seemed to help with my concentration and short term memory problems.
I haven't had my eyes checked yet, but I am going to be referred to an ophthalmologist. My rheumatologist said that toxicity is very rare at these doses, and it's more of a concern when Plaquenil is given at higher doses to treat malaria. I hope it won't affect my eyes, but I seriously doubt it will. I haven't noticed anything different about my vision.
If a doctor suggests a medicine for Sjogren's, don't decline it out of fear. This is a really horrible disease and you need whatever help you can get. Medicine CAN help. Don't get scared by reading about all the possible side effects. Pretty much every medicine has all kinds of scary side effects listed, but most people never get them. And if even like 1 person out of a million reports a side effect, by law the company has to document it. If a doctor suggests a medicine, then you should always at least give it a try. If you get a really bad reaction to it, or get side effects that you can't deal with, then you can simply stop taking and tell your doctor so you can try something else. A doctor isn't going to give you something that's actually dangerous, so it's not like you're going to drop dead from it. Getting a dangerous reaction to a medicine is actually very, very rare. And if you read about Plaquenil, it actually does help a lot of people with autoimmune diseases. It can help with fatigue and to kind of keep the disease in check so that it's less likely to cause problems with your organs.
The only drug I personally refuse to take (unless it's an absolute life-or-death last result) is Prednisone. From what I've read, that stuff has some really nasty side effects and EVERYONE seems to get at least some of them. So far, my rheumatologist hasn't said anything about that, thank God. It seems like he is trying to avoid giving that to me. My Sjogren's has gotten worse lately, and he just put me on Methotrexate for swelling in my glands and joint pain. MXT can be pretty scary too if you read about it, but I'm willing to try it if it will help. I also did read that a lot of people got help from it. I think the Plaquenil is still helping me, but for whatever reason my Sjogren's is just getting more aggressive lately.
If a doctor wants to give you a medicine, then they think it might help you. You should at least give it a try.
There is no "cure" for Sjogren's (at least not yet) and medicine won't magically make all your symptoms go away. But it can definitely help so that you can at least have a somewhat normal life again. I get good days and bad days, but at least with the medicine I have a lot more good days.