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lynday
05-07-2012, 07:06 PM
hiya everyone
Ok the final results are in...umctd and sjjorens...I am so shocked because I was also being tested for celacs desiese. ( sorry for spelling errors i'm a very poor speller). My test for celaics came back negitive. So here are my questions. my ana came back very high (more than 1.640) not sure what is higher than that. My rnp that was a 3.7 came back negitive so we know that i do not have mctd...however my dry eye test came back postive a level 5 out of 10 and my mouth is always dry. So with all this i was wondering....will my eyes and mouth always being dry if i do not take medicine for it will my dryness get better or will it continue to get worse? (i'm already taking plaqunil) i guess i'm asking if this will cure on its own or will it contunie to get worse. My throat is constently hurting me and feels like i have a golfball inside. Will that get better or will that get more irratating as time goes on. I also have this rash its a red bumpy rash that is only in certain places.....my breasts and behind (sorry tmi) what causes this rash to come out in isolated place. Does anyone know what that is connceted to? I asked my dr. if it could be allergy related and he said no. It does not ich me or hurt but its not pretty if you know what i mean........has anyone experienced any of these things????
thanks for your help
LynDay

magistramarla
05-08-2012, 02:09 PM
Hi Lynday,
I'm not at all surprised that you have a Sjogren's diagnosis. Your descriptions had me thinking that from your first post.
Have you seen these sites? http://www.sjogrens.org/ and http://www.sjogrensworld.org/index.html
Both of those sites and attending a Sjogren's conference helped me to realize that it is much, much more than just dry eyes and dry mouth.
SJS is really a very close cousin of SLE.
To answer some of your questions - Plaquenil is usually the first med prescribed, just as for Lupus. It does help with the inflammation, but I didn't find that it helps with the dryness. Restasis is really the best thing going for dry eyes. Many of us also use OTC artificial tears, such as Systane or Theratears. Some folks get relief from the eye doc putting in plugs into the tear ducts, too. I'm trying to avoid that - Restasis is doing the trick.
You should see your ophthalmologist for a baseline vision field test now that you are taking Plaquenil, and he should see you twice a year. You should ask him about Restasis and OTC drops, too.

It is important that you treat the dry mouth - it can do a number on your teeth. We are much more prone to cavities and broken teeth. Dentists lectured me for years about dental hygiene, when I knew I was doing it right. It turned out to be the SJS ruining my teeth. Biotene makes a full line of toothpastes and mouthwash that does help. I also take a prescription called Pilocarpine (generic for Salagen) to help my body make more saliva. I can take from 1-4 per day, depending on how dry I feel. When my throat gets dry, I get an aggravating little dry cough, so I need to pop another pilocarpine.

Many of us get strange rashes, with both SLE and SJS. Vasculitis is a common one - that might be what you are seeing. There are lots of old threads here where we've talked about rashes.
I'm glad that you've gotten some answers and that your docs are on top of all this.
Hugs,
Marla

tgal
05-08-2012, 03:32 PM
Marla is right. Too often people just name the top couple of symptoms of an AI disease and think that is all there is to it. Many of the AI diseases have overlapping symptoms just like we can have overlapping diseases. I know being sick is hard but at least you are getting some answers now. That is always helpful

lynday
05-08-2012, 07:04 PM
WOW!!!!! Marla, You really could be my doctor. Do you take health insurance? Of course I am kidding. You have answered the very question that my dr is blowing off a bit. I'm not sure if this disease(UCTD) is a dangerous condition to have....i'm assuming the more questions i ask and the more feedback you give me it is not one of the better conditions to have. With that being said I am also aware now that Sjogrens is just as complacited and needs to be treated other wise it will get worse. That is what I do not want to happen. I have already gone to the Ophthalmologist. My eyes are healthy!!!! (yeah a healthy body part hard to believe) but he is the one who tested me fr dry eyes. I do have the drops and he did discuss the plugs for the tear drops but like you i want to stay away from that now. I know i'm very knew at this and i'm very scared and confused. i know i'm in for avery long drive on this dark road. Every time I have a concern you have taken your time to answer my questions with such understanding. Marla I cannot thank you enough for helping me through this. I have a million more questions. But for now i will let you be.......I hope you are feeling better.
hugs
lynday

lynday
05-08-2012, 07:05 PM
ty Mari ....u as well have helped me trough this very difficult road...i hope u are feeling better......thank you for your support!!!!

magistramarla
05-12-2012, 09:30 PM
Lynday,
Here is an excellent article that I found that explains the difference between UCTD and MCTD. http://www.medicinenet.com/script/main/art.asp?articlekey=16955
I'm sorry that I took a while - I was down and out with a migraine headache.
I hope this helps.
Hugs,
Marla

SleepyInSeattle
05-13-2012, 09:13 AM
I really have no more useful information, just saying 'hi" and I also have Lupus and Sjogren's....and Marla ROCKS! :-)

Oh, and the Sjogren's World forums are very useful and supportive.

steve.b
05-14-2012, 12:19 AM
....and Marla ROCKS! :-)......

you may be interested in this thread
http://forum.wehavelupus.com/showthread.php?11626-thank-you-MARLA