After having severely dry eyes and mild to moderate joint pains for months and months, I was finally diagnosed with Sjogren's Syndrome this past week. My Rheumatologist says that other than treating the symptoms as they arise (like that's a big help!), there is nothing else he can do other than offer me Plaquenil. My Opthalmologist, who I see regularly, agrees that I should try it. The Rheumatologist told me that it is mainly used for Lupus, but it is being tried in people with Sjogrens. I am curious to know if any of you have used Plaquenil solely for Sjogrens (with no presence of Lupus), and did it help at all with the dry eyes, etc... Also, how bad are the potential side effects? I know about all of them, but I want to hear about it first hand from people who have used it. With all of the potential side effects, is it worth it for me to use Plaquenil, which isn't even guaranteed to work, if I don't have Lupus? Please help, I am very confused.
Hi Purple -
I have Sjogren's plus SLE and some other Autoimmune Disorders. I've been on Plaquenil for 10 months, and personally, I haven't noticed any improvement BUT a lot of folks RAVE about Plaquenil. It's worth trying out. Side-effectwise, I haven't had any that I noticed. I do get my eyes checked every 6-8 months b/c of the Plaquenil but have had no problems.
Also, ask your doctor about plugs for your tear ducts. I know it sounds kinda creepy but it made a big difference in my day-to-day functioning. You won't feel them, doesn't hurt to put them in... They may come out occasionally - had two come out in two years, you notice it b/c your eyes get dry all of a sudden...
Also, keep your body super-hydrated. I notice an improvement when I drink more water (min. 1 gallon/day). Plus it keeps the body flushed out.
Thanks, I am really seriously considering taking the Plaquenil. Now that I think about it, ever since I can remember, I have been having joint pains and tingling and numbness, and I never associated that with the dry eyes. Maybe the Plaquenil will help that too. My Rheumatologist said to just call him and he'll give it to me. As my eye dr said, anything that helps treat the actual disease is going to help with the dry eyes. Have you found that it has made any difference for you at all? I actually have gone one step further than having my eyes plugged. That helped me a little bit, but as my tear ducts expanded and stretched around the plugs, they fell out. This happened like 4 or 5 times in a month or two. My doctor tried larger sizes, but it didn't work, and they were irritating me. So he permanently closed them by cuarterizing them (correct spelling?). At first it did sound weird to close my tear ducts permanently, but now he has closed all 4, and that actually did seem to help a little bit. As far as getting the eye exams while taking Plaquenil, well, that is no problem because I am in his office almost every week anyway. It's a good thing I like him. I had to laugh when the Rheumatologist told me that I would have to see an eye dr twice a year! I'll try drinking more water, I guess anything that keeps the body hydrated can't hurt. Thanks again. It's nice to hear about it from another patient.
Have they tested you for SLE too? I was "off the charts" on Sjogren's for a while before I tested positive for SLE... Make sure your Rheumy keeps an eye on it.
Make sure you take the Plaquenil after a "good breakfast" (not a diet coke and m&m's). It will help avoid any initial upset stomach. The improvements may be subtle, so talk to your doctor about an agreed-upon period of time to let it work. You also might want to make notes daily about particular joint pain, etc - the improvements may be subtle, it helps realize the progress.
Keep us posted.
[This message has been edited by scbagrrrl (edited 08-06-2002).]
no, I haven't been tested for SLE, I should mention that to him. The thing is, my sjogrens results were very borderline. The blood tests did not show one way or the other if I have it or not. The way that he determined this was that first of all, in a completely healthy person, the results would not be borderline, they would be clearly negative, and also by doing a physical examination and listening to my complaints and symptoms. Keeping a journal for the joint pains is not a bad idea. I already do that for my eye problems. Every time I put in an eye drop, I write it down (using them as much as I do, I'd never remember otherwise) as well as writing down any symptoms. The thing is, my joint pains are already so common that I don't even notice them. My neck could be hurting all day, and I won't really take notice of it until I get a sharp pain. Does that sound at all familiar? My doctor and I agreed that if I start taking the Plaquenil, I would see him two months after for a follow up, and to see how I am doing.