Why did your rheumy put you on MTX? Usually that's for people with lupus or RA. Did you test positive for either one of those connective tissue disorders?

My RA factor came back very high and so did the ANA and Sed rate. I am guseeing that is how he diagnosed the UCTD.

What is UCTD ?

is it MCTD?...sorry your hurting...

my dear critty
i know how painfull its i had sjs for 10 years and tablets didnt work good with me either methotrexate cause me alot of stomach pains honey be strong and patience deal with it and try to imagin it as other very mad person who share ur body dont fight it and relax time to time try swimming and hot water and put ice on ur muscle that pains and the only thing that help with me is arabic cupping i wrote alot about and i dont use tablets now only medrole by time u will used to it just dont fight it and be in good mood cause it gona be long long horrible days sorry but u have to face the truth
have anice day and wish u aluck

Mixed connective tissue disease and undifferentiated connective tissue disease are different from each other. UCTD means there is no clear diagnoses or distinction between whether it is RA, SLE, or MCTD but there is autoimmune activity in the body. Usually labwork comes back abnormal but there is no distinct pattern.

The methotrexate can be used when other drugs aren't effective, but I do think maybe if your uncomfortable with it now there are other options. You can wait for the Plaquenil and give it more time to be effective. Full results are really noticed until 6 months. I know alot of people that take Methotrexate and have no symptoms. Start off with a very small amount, like half of what you are prescribed to see how your stomach does. Or you can ask for an anti nausea pill like Phenergan or Prilosec for acid reflux. Also be sure to take your folic acid because that can minimize the side effects of Mtx. If the side effects are too bad you can always stop it you have that option too. Hope you feel better.

Sorry to hear about your pain and I can relate to you because my mouth and eyes are not unusually dry but my body just aches and is so stiff. Actually from that was that it lead to me being tested and diagnosed with ss. Fortunately I was put on plaquenil and it has done alot for me.

Primary Sjs here as well, I'm doing MTX with Plaquinel as well as Etodolac. One would expect my stomach to be a horrible mess but I believe taking Nexium, always eating a bit with the meds, and drinking a full glass of water has really prevented problems. Make sure you take the Folic acid with the MXT and get a liver panel every 3 - 6 months and you'll do well.

Critty... I'm curious you said your Rheumatoid Factor and Sed Rate were way high. Can I ask what those two numbers were? Mine were high too and I have only been diagnosed with SS, but there is so much more going on. I feel like my doctor doesn't listen to me.

I'm sorry you're hurting and so sorry you can't work much.

I've been on Plaquenil for months now and was really believing that it was helping with the joint swelling and pain. I woke up this morning hurting so.
My SS is primary the dr. thinks. I've had the salivary gland issues and dry eyes for years. The body stuff was compounded by severe anemia.
My PCP put everything together and ordered the bloodwork. I can say that a year later I'm feeling better than when I crawled into her office. Today I'm hurting though and I can really understand you just wanting to sit and cry. (just to moisten the eyes!)
If you were diagnosed just today try and take the info in a little at a time. I was overwhelmed when I found out. Log in here often because there are some great tips and sage advice from others.
Feel better!

Hi critty. sorry you feel so bad right now. I hope you feel better soon. big hugs to you honey ((((hugs))))

I have been diagnosed with primary sjogrens but the doctor also says I have UCTD and also meet criteria for Lupus....and my GP said initially he thought I had MCTD. Confusing isn't it!!! But she is a very good doc. It took me 8 years to find her and actually get a diagnosis and treatment---and I was very, very ill at times (and other docs wrote me off as crazy, chronic fatigue, etc)

I have gotten a second opinion from a major university teaching hospital and they agree with her plan.....one thing I have learned is that auto-immune diseases often do not neatly fit into a box.

In Primary SS, you can have muscle pain and weakness as well as many other symptoms. Pleurosy and the muscle pain and weakness were big problems for me. I had a dry mouth off & on & my eyes were pretty much fine. I just could not wear contacts.

I understand having problems working! Often the pain, fatigue and weakness are unbearable. I used to come home from work and crash on the bed or couch and fall asleep fully clothed. Getting enough rest, a healthy diet and not overworking are very important to having a good life with autoimmune problems. Hopefully once you get your symptoms under control with meds, your work will be more manageable.

Plaquenil is often a start treatment wise. I also tried MTX. It seemed to work a little but then pooped out on me. Plus, I had horrible fatigue and stomach upset. My daughter however takes it without any problems. It helps her joint pain very nicely.

Are you able to describe to your doctor specifics about how your pain in the muscles and joints effects you? Have you started a pain and activity log...and also when you begin and end treatments?

What about food or additive sensitivity? I have definitely have autoimmune disease and take prednisone, Myfortic(cellcept), arava, and plaquenil....but I can't tolerate any aspartame (Nutrasweet)--even a stick of sugar free gum will increase my joint pain 10 fold. Some type of chips, MSG, soda and too much salt are also triggers. Just food for thought.

And regarding SS vs. UCTD vs MCTD....according to 2 different well respected docs...there is a lot of overlap. For example, they said all three can have positive anti-DS DNA, in addition to other positive labwork. UCTD will often have positive labwork but is mostly limited to joints and there is no major organ damage. MCTD--is a more serious disease and can be fatal from organ damage and failure. SS can be a recipe for misery---and no two people with primary SS look exactly alike in how the feel and how it all starts. Doctors vary in how aggressive they are in treating it. I got lucky and found a doctor willing to treat me, despite being a "mystery", as she puts it.

Oh, by the way, I have been treated for 2.5 years and often have really great, pain free days...more often than not. Just wanted to share that. Hang in there honey. xx