View Full Version : Sjogrens
01-19-2009, 11:50 PM
I'd like to hear from someone out with Sjogrens...I've been having problems with my eyes lately...I told my doctor...they "just feel weird." It almost feels like there is sandpaper under my eyelids...my mouth is dry, and I've had a dry cough. The courners of my mouth also crack from being dry. I am due for an eye exam next month, and am going to ask my eye doctor to test me.
I've read that plaqunile is a medication for it...and I already take 600 mg a day.
01-20-2009, 02:57 AM
I am probably going to be tested very soon! My eyes are so dry that I feel like they stick and my lips stick to my teethe!!!!!! Here is a website that might help you understand this and may help you put together some questions for you doctor:
Hang in there and I know someone will pop in who has it
01-20-2009, 03:56 AM
Hi Mary Jane,
I read your post here. I too have Sjogrens and Lupus. A good drug for the dry eyes is Restasis. I think that is how it is spelled. It is eye drops. For the dry mouth, I suck on sugar free hard candy, lemon drops and drink water. They have a fake saliva, but that stuff tastes nasty big time. Oh I forgot you can also use eye drops called fake tears. I use that and it helps. I hope that this helps some.
01-21-2009, 12:06 AM
Thanks for the info. I'll talk to my doctor about the meds. Do you find that it has affected your vision....my vision seems to have gotten worse. I also take 600 mg of plaquinil a day...so that could also be a factor.
01-21-2009, 09:21 AM
For the dry mouth, I suck on sugar free hard candy, lemon drops and drink water. They have a fake saliva, but that stuff tastes nasty big time.
I have secondary Sjogren's also. My eyes are a bit affected, so I use Systane drops. The absolutely worst symptom (for me) is dry mouth. Kathy's right, the fake salive is NASTY! I, too, suck on sugar free candies (not too many or you'll have get a laxative affect!) and sip on liquids.
I have had symptoms of SjS for several years, but thought the dry mouth was due to Adderall that I take for hypersomnia. Wonder of wonders, the dry mouth is due to SjS, not my meds. What some people consider symtoms of AI disorders, I thought was just part of the aging process (and I'm only 44).
Good luck to you!
01-21-2009, 09:44 AM
I really need to make a list of things im experiencing lately, i read dani's link to this and thts me!! dry mouth especially when i got to bed, only happens at bed time really, my eyes are the worse to it feels like theres a film on them most of the time too!
that and fibromyalga or however you spell it
01-21-2009, 08:01 PM
I get that film on the eyes too, though I don't have much trouble with dry eyes or mouth. The eye doctor told me the film is a form of SS where the disease is messing up the balance of the elements that make the moisture to coat and protect our eyes.
The fun never ends.
BTW, I'm surprised that two of you are taking 600 mg. of Plaquenil. My understanding is that 400 is the max dosage. I wonder how many others are taking 600 mg? That might be a good option instead of bumping up one of the more toxic drugs.
01-22-2009, 07:51 AM
I too have both SjS and SLE.
I agree the dry mouth is the worst!!! And the fake saliva is nasty. But I did find one that is not too bad, it is called Stoppers 4 Dry Mouth. The only place I can find it is at Walgreens. It is based on enzymes that increase the saliva flow, much like hard candy (without the laxitive effect). :shock: Compared to the other options, the taste is not too disagreeable and for the amount of product you get for the cost, not too bad either.
At first I liked the results from Restasis, but over time found the burning to be very difficult to overcome. So I have stopped and now use a OTC drop called Optive. When selecting an eye drop be sure to select a preservative free eye drop.
For the ladies: I attended a conference on SjS and learned that baby shampoo is a gentle way to remove eye makeup.
Best to all,