r/UCTD

Hi all, curious to know what medications those with UCTD are taking. I’ve been on plaquenil for about 8 months with a noticeable improvement in symptoms, but have recently been having an uptick of flares and symptoms return.

Because UCTD is not a defined disease, I know often many autoimmune medications are used off-label for symptom management. Just wanting to hear other’s experiences and what has worked/not worked for them.

I have another appointment next month, and am trying to figure out if there are additions we can make to my treatment plan, or if my expectations are too high and it normal for medication to only make symptoms more manageable. I suppose I thought plaquenil was going to erase my symptoms, LOL. While it certainly as helped, I’m left feeling like there has to be something more than can help.

Any advice is welcome. Thank you!!

So I’ve only posted once before and appreciated all the advice! I got a second opinion like everyone suggested, which I’m so grateful for! Since getting a second opinion I’m feeling seen but also confused. For background I am 22F with a lot of overlapping health conditions. I have tons of stuff and feel like things are only getting worse. Last time I posted it was about my previous rheum and my results and the treatment I received.I had gotten a second opinion about 5 weeks after my previous appt and this rheum agreed my previous labs weren’t great. He got some more labs done just 6 weeks after my last and everything dramatically jumped. I went from a titer of 1:320- 1:1280. I started out with just concerns of connective tissue autoimmune/ lupus and only testing positive for chromatin antibodies to now also having high anti TPO antibodies. I had also had elevated IgG4 and it’s only going higher. Almost all of my immunoglobulins are elevated and higher the second set of labs. My c4 has been consistently borderline low which is also weird. Amongst all the other blood work I tested positive for the rheum was feeling more confused as my situation looks more complicated and overlapping. I saw this doctor when visiting family out of state so he was understanding and helpful and gave me a diagnosis of UCTD just to get my foot into the door and get a new rheum back home. I now have a new amazing rheum back home and I’m getting my third set of labs done including the avise test. I dont really know anyone who has gone through this before and I’m trying to figure this out on my own. I was wondering if anyone has had a similar situation or has also tested positive for multiple things at once and what that looked like. Any advice and experiences would be much appreciated!
Sorry for the shortened summary if you need more info lmk!
Thank you!!

Finding the right healthcare provider can be one of the toughest parts of managing UCTD. A good doctor should listen, take your concerns seriously, and work with you as a partner in your care, but that’s not always the case. Sometimes, warning signs tell us a provider isn’t the right fit.

• What are some red flags you’ve noticed in doctors, specialists, or other healthcare professionals?
• Have you encountered dismissive attitudes, rushed appointments, or lack of knowledge about UCTD?
• What behaviors or experiences made you realize it was time to look for someone new?
• How did you make the switch, and what advice would you give to others who might be hesitant to change providers?
• Are there “must-have” qualities or values you now look for in a medical professional?

Sharing your experiences can help others recognize when it’s okay to advocate for a better care relationship.

Big or small, a win is a win.

Tell me something that made you smile this week, a goal you crushed, or a moment you’re proud of. Let’s celebrate the good stuff together! 

So I’ve just been diagnosed with UCTD but I’ve have symptoms since my early 20’s (I’m 37 now). One of my first symptoms was dry eyes that made my eyes red and sticky. I’ve never used eye drops and I don’t really know why. I just got so used to the sensation that I didn’t bother. Anyways, I recently had an eye exam and my doctor said my cornea looked like sand paper and that I should be using drops so I got some that he recommended but I feel like they don’t make much of a difference. Is this common? I’m thinking maybe they’re working but they just don’t feel like anything. I keep using them over and over and they still feel so dry. Anyone else experience this?

Hi..I have been diagnosed with uctd an year ago..If there is anyone around who has been dealing with this for 5 or more years without progressing to a definite ctd,can you please share your experience,symptoms etc?Just anxious about how this disease is gonna progress😅😅

I’m 27 years old and a few days ago while putting my hair up, I got severe lower back pain and had to go to the ER the next day because I couldn’t walk without falling and in severe pain. My CT showed multiple bulging discs, multilevel degenerative disc disease, facet arthritis, and my nerves were being compressed in the lower lumbar and sacral region. They wanted to admit me for further testing and imaging but after hours of being there, IV steroids and multiple pain meds- I could walk without falling but it was still painful and I was shuffling. They said I could try at home treatment first but I’ve been home for a few days on Medrol and stronger pain meds and I’m getting worried that I’m not feeling much improvement unless I take the oxy. I can’t rely on opiates to keep slightly masking things forever though. I’m seeing a surgeon this week but I just feel nervous about realistic treatment plans and am wondering if anyone else has had anything like this??

Hey everyone,

General inquiry here. I am newly diagnosed since March. My rheumatologist really thinks I have lupus but isn't ready to give me that official diagnosis. She said it could also be rheumatoid arthritis or even both.

Anyway, I wanted to ask if anyone knows the point of testing hs crp? Last month it was elevated but I was on prednisone. I've since tapered off and started hydroxychloroquine and my recent blood work shows that my hs crp has doubled.

At my last appointment, my rheumatologist said the hs crp doesn't give a lot of information because it just detects generalized inflammation. My ds dna is always high so it's obvious I have inflammation.

So I guess my question is, why even test the hs crp if it doesn't really give a lot of information? I get my labs through quest and it says I have a higher relative cardiovascular risk because of how high my hs crp is. Why am I at a higher risk for cardiovascular issues if the hs crp is just a sign of generalized inflammation?

I'm confused. Can someone educate me please? Lol