I've noticed some of you are on Plaquenil. What is it actually prescribed for? What experiences have you had with it? Does it seem to slow Sjogrens progression?
Great question Anne! For some people, it may be diagnosed for another autoimmune disease. But it seems as though there is more recognition of Sjögren’s as being responsive to many of the same meds used for other autoimmune disorders.
What I have noticed is that plaquenil seems to be diagnosed when there is ongoing fatigue and/or joint pain. I know that for me, it made a huge difference in terms of fatigue.
Thanks for the explanation Stoney! I have Sjogren's & severe Neuropathy. I'm new to all of this. I've been looking in to different meds that may help me as I've learned very early in this I must be my biggest advocate or nothing seems to get done w/Dr.s I'm dealing with. As well as the neuropathy Sjogrens brought with it I also have extreme exhaustion and joint pain & stiffness. I get up every morning just as exhausted as when I went to bed! I think I'll mention it to my Dr. when I see him. At this point I'll try anything that could be beneficial. Thanks again.
Glad to be of help. It certainly couldn’t hurt to bring it up with your doctor.
Hydroxychloroquine for Sjögren's Syndrome
|Generic Name||Brand Name|
Hydroxychloroquine is available only by prescription as a tablet taken by mouth. It is often given with other medicines.
How It Works
Hydroxychloroquine appears to slow the immune system's attack on the moisture-producing glands.
Why It Is Used
Sjögren's syndrome is an autoimmune disorder in which the immune system attacks the body's moisture-producing glands and may eventually cause problems with the function of vital organs, such as the lungs, bladder, kidneys, and liver. It can also cause fatigue and joint pain. Hydroxychloroquine reduces immune system action.
I am on it. And have been since February. Noticed a personal degree of effects within 6 weeks.
Lisa, thanks for the info. on Plaquenil it's greatly appreciated.
Hi Ann.... a couple of things to keep in mind with Plaquenil... You need to be patient with it. It takes a few months to build up in the system and get to full strength so it may seem like its doing nothing at first. Hang in there. Also I know some of us dealt with nausea in the beginning too. Thankfully that resolved itself after the first week or two but it was also a case of hanging in there and getting through it. For me personally it made a huge difference in the fatigue and some in the joint pain too. Its not a cure all but it does slow down the disease and gives a decent amount of relief (if you tolerate it well). Please keep us posted on how you are doing.
I take placquenil for my Sjogrens’s and my daughter takes it for her lupus. It’s an anti-malarial drug that has also been found to help relieve fatigue, joint pain and inflammation in some individuals with autoimmune diseases.
Because it takes a long time to become effective (sometimes as long as six months) I’ve found it hard to determine whether or not it is actually helping. I started taking it over a year ago as soon as my symptoms became serious so cannot tell how much worse they would have gotten without it.
The same goes for my daughter. Neither of us feel like it’s a wonder drug but we don’t want to take the chance of coming off in case it’s doing some good.
I make sure I take it with food because it will affect my already-troubled digestive tract otherwise. You also need to be sure you see an opthamologist every six months because one of the side effects can be damage to your eyes.
I can say, after 5 months, I have noticed less swelling in the knees and less fatigue. I'm thankful for this because the fatigue was disheartening. I just wish I could walk like I use too, but at least I'm doing more.
I know how you feel about walking like you used to. I'm using a walker right now but my legs are getting stronger! I can walk on my own around the house on good days w/out my walker. My physical therapist gives me a hard time though. I'm supposed to use it for safety also for neuropathy. But I just want what independence I can get back no matter how small.
Hi Ann D. ,
I have been taking Plaquenil for little over a month. I have noticed a decrease in joint pain and I am sleeping better which is helping with the fatigue. I am hopeful with time some of the other symptoms will improve or at least not worsen.
I am sorry you are having a tough time…
I have been taking plaquenil for over a year. I didnt notice any difference for at least 5 months, and I had a reaction to a heart med. I didnt know it was the heart med and my primary Dr. Stopped the plaquenil also. after 2 weeks of not taking it. I went into a complete flare. Itch Rash everywhere,Fever, glands swollen, fatigue, sick feeling like I had the flu, exhustted....It lasted for almost 3 months. Plaquenil takes a while to get in your body and to start really working but if you quit taking it, let's just say it doesn't take long to get out of your system.
Thanks for the info. Beeb.
I agree that it takes a while to kick in. I actually retired early from teaching due to fatigue and joint pain and brain drain, though at the time I didn’t know it was due to Sjogrens. Just last week I was standing in the upper deck of a stadium jumping and dancing with my daughter & friends at a Zac Brown Band concert when it dawned on me… I had gone up and down the stairs ( for a beer, haha)!several times and was still moving and grooving relatively pain free. I turned to my daughter (who is very solicitous and protective of my physical limitations) and said, “you know, I think my meds just kicked in.” And I remembered that Earlier in the week I had also decided to go back to work part-time in the Fall. So, this is not a technical answer to your question but I wanted to add some positive experiences to let you know that better days are possible… Good luck.