MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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Eyes on Fire

tammib
tammib
I need advice again. I have managed to wean myself off of prednisone and painkillers. My fatigue is all but gone and my joint don't hurt any more. I also quit methotrexate because everything was getting infected, especially my mouth. For the most part I feel normal. My throat is dry and gets even dryer at what feels like the flip of a switch, but that is not nearly as uncomfortable as my eyes that burn like fire constant. When I had my positive ANA I tested negative to Sjogren's. Does anyone have any experience or advice for it. I went to the walk-in clnic at my office today at my office. I saw a PA who prescribed cromolyn eye drops but it hasn't phased it so far. Sbe did not seem to have a cause in mind. My Rheumy is impossible to get a short notice appointment. I don't see her again until the second week of January. Would really like to be able to sit through a meeting witbout keeping my eyes closed.
MoorGrace
MoorGrace
I wish I could give you the same excellent advice you've been giving me; however, I don't suffer from dry eyes (yet). And if I did, my doctor wouldn't know what to do unless I told him what to try.

Good luck - I hope someone here can help.
Terrilynne
Terrilynne
I have dry eyes because of the MCTD. my gynecologist thought I had Sjogrens but lo and behold it was MCTD. They prescribed Restasis ( eye drops) for me and it helped a lot. Plaquenil helps me with both the dry eyes and dry mouth. ( Also joint pain). Are you on Plaquenil?
I also use natural tears eye drops if they are really bad. You can se those all day.
Hope you feel better soon.

Terrilynne
gabpaul
gabpaul
I take Restasis and use and Boitene for dry mouth. They thought I had Sjogrens too, but I had lip biopsy that came back negataive. Then I read that 45% can come back as a false negative. Who knows?

Good luck,

Gabrielle
Amber7
Amber7
I tested negative for Sjogrens also and the eyes and fatigue are the worst symptoms of MCTD for me. Once my rheum prescribed Plaquenil, my mouth got better. For flare ups I use Biotene rinse. My opthomologist prescribed Restasis and drops during the day and Genteal gel at night. I still had issues with burning, dryness and blepharitis. My rheum suggested that I get punctual plugs. I got them in July and wish I had got them earlier, they have been a life saver for me. I work on the computer 8 plus hours a day and now I no longer have discomfort. I even manage to wear my contacts again on the weekends. I still use the restasis with them and take a fish oil supplement called Hydroeye that my eye doctor recommended (and approved by Rheum).
I hope you find a good solution for you soon, I can totally relate to haw much pain you are in.

Amber
MToennis
MToennis
Could be dry eye and blephoritis. That is an inflammation of the eye lid margin. You can gently wash your eye lid margin daily or 2x daily with a few drops of Johnsons baby shampoo in a little water. Dip a Q tip in the solution, wipe off the lids over the lashes and under them. Rinse. Put in eye drops for moisture 2-3 x a day and get some dry eye gel for at night.
Blephoritis is common with autoimmune disorders. My brothers eye doc gave him a kit that did not work as well as the Johnsons baby shampoo and that is also what I use when it flares up. In a week or so, it feels better. I also lose a lot of lashes.
Hope this helps. At least it is a cheap solution.
Mary Ann