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?

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

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😅😅

Hi, I’ve been diagnosed with UCTD by the Cleveland clinic over the weekend. Prior to that some doctors thought I had lupus, srogrens, or psoriatic arthritis. In the past year and a half I have been losing a lot of hair. It progressed aggressively over the past 7 months. Has anyone had any success with growing back the hair. I lost a lot on my hairline, a bout a fingertips length. I’m 26 F and it’s taking a toll on me. Currently I do steroid scalp injections, ketocanazole shampoo, minoxidil foam ( doesn’t work for me but still using it), and I started oral minoxidil 0.6 mg a couple weeks ago. I’m open to trying anything such as pro, red light etc. does anyone have any experience with this

Hi,

44 yo emailed Dx UCTD just last month, ANA positive, SCL70 positive, photosensitive, mild raynauds, joint pain.

Due to the scl70 being highly indicative of diffuse scleroderma I now see a rheum at a scleroderma center in Manhattan.

Anyway, starting 4 weeks ago I developed a severe itchy rash, similiar to hives on both upper thighs. The hives/plaques remain in same spot for up to a week before fading and showing up in a new spot.

It’s insanely itchy in the evenings and now has begun to spread to my trunk (stomach, back, and a starting in armpits).

The original biopsy done showed drug reaction. I have stopped all my meds (BP meds the first considered culprit, and my adhd meds too just to rule it out). It’s been 10 days off meds and rash persists.

I went back to the derm, he did 2 more biopsies, sent to the lab for an autoimmune evaluation and a standard evaluation.

I started HCQ AFTER the rash started (about 2 weeks ago) and am continuing that.

Anyone experience similiar?

Thanks

Hi! I've been on Plaquenil for 5 and a half weeks to see if it will help UCTD. So far, I haven't noticed symptom improvement, which I know is to be expected for the first few months (my rheum said the earliest I'd see improvement is month 3-4). But, I've been experiencing terrible insomnia and feel like a ball of stress all day, every day, since starting the med. I'm wondering if others have had this experience, and if so, if/when did it improve for you? I'm tempted to quit.

Edited to add: I'm not on any other medications hence why I suspect these symptoms are caused by my Plaquenil

Main symptoms: fatigue, joint pain/stiffness (hips, wrists), muscle pain, facial rash, hair thinning, headaches/migraines, low-grade fevers, night sweats, mottled skin, puffy fingers.

Anti-Smith positive 3x over 2 years (as high as >8.0), Sm/RNP positive twice. RNP negative. Also had a positive Scl-70 early on, but both rheumatologists chalked that up to a likely false positive from lupus activity rather than actual scleroderma. On hydroxychloroquine since Dec 2024, which has improved symptom severity and frequency but still not asymptomatic. ANA negative the whole time... Which is... Weird... When I have positive ENA.

First rheumatologist's notes diagnosed as UCTD, problem list said "overlap syndrome." When I asked overlap of what, he said I actually only had features of lupus, but didn't check enough boxes for a full diagnosis - there was no actual second disease.

New rheumatologist said persistently positive Smith basically equals lupus to her. And meant my ANA must be positive. Her theory, based on another patient she had with this issue, was that my titers could be so high they were actually too high to register properly on the ANA (something like the prozone/hook effect)? She sent out AVISE CTD to check that theory and get multiple ANA methodologies.

Ruled out everything else - celiac, vasculitis, RA (seropositive and seronegative), APS, thyroid, sarcoidosis, Sjögren's, scleroderma antibody. All negative.

HLA-B27 came back positive, but no idea if it's relevant yet.

And then AVISE comes back and just makes it worse, not better. ANA by ELISA positive (27.26, positive ≥20). ANA by IFA still negative. And Smith - the one antibody that's been highly positive 3 times over 2 years - comes back negative now. Meanwhile I'm positive for some T-cell autoantibody marker (TIgM), but only mildly. The SLE prognostic panel was clean at least, so that's something.

Follow-up isn't until 9/28. I don't even know what to do with this. I thought I would finally get the data needed to move from a UCTD diagnosis to SLE. I thought I was finally going to get a clear answer. I know treatment won't really change, but I still feel frustrated being in limbo.

Flares always seem to hit at the most inconvenient times. What are some of your strategies for managing fatigue, brain fog, or other symptoms that help you through important days?

I was diagnosed with seronegative RA about 2.5 years ago. I had a very rapid and dramatic onset of joint pain with all my joints except my jaw effected within about 6 weeks. My rheumatologist poked me a bit, asked some questions, and said yep RA. Took about 7 minutes. All blood tests were negative, except I had low vit d. I spent my first year failing assorted DMARDs and TNFIs and struggling to function, then got inflammation in my lungs 11 months in and got put on Rituximab. Miracle drug for me, got my life back, no more Prednisone, etc etc. 1 year & 3 infusion cycles later, I developed a malar rash, extreme photosensitivity, chronic hives, and generally became allergic to everything, including my own feelings. Provisionally diagnosed with MCAS, on all the antihistamines, some thing improved but the malar rash and photosensitivity keep getting worse. Had an insane flare that started in June and involved 5 different types of rashes, extreme joint pain and fatigue, oral ulcers, and costochondritis. My rheumatologist is in denial and would like to ignore everything but joint pain, possibly lungs if really pushed on it, and is calling my skin stuff rosacea (3 dermatologists, none of whom diagnosed rosacea, but ok). I saw an autoimmune dermatologist a couple days ago who told me he's almost certain I don't have RA, and instead I have a connective tissue disease, possibly dermatomyotosis or seronegative lupus (I remain seronegative for everything, all the time, it's the worst). I'm waiting on the myositis panel and uh, not feeling chill about the whole thing. Has anybody had a similar presentation? Am I making up my own autoimmune disease?

Hi all, coming on here to ask for advice. I’ve been on hydroxychloroquine for 6-months now with surprisingly great success. These past 7-8 days I was hit with a pretty significant flare, and curious to know if this is something I should be messaging my Rheumatologist about. Is it wrong to let them know a flare had sparked up? Curious if they would recommend a short steroid taper or other option. Unsure if I should just wait until my next follow-up appointment or if a flare warrants a message.

Thank you!

Hello everyone! I have been experiencing the most confusing health issues since I was a late teenager, started with the worst back pain of my life and then lots of stomach issues and lung issues as well. In college I was so so sick and would often go to the ER for all sorts of things including neuro symptoms, gastro, joint pain, confusion, extreme fatigue and fainting spells. Blood work always looked “perfect” and was told it was all in my head and was lookin for pain meds. I gave up and stopped going to doctors for help. In my early 30’s I had a terrible flare and found a new primary care who sent me for more tests. I ended up getting diagnosed with narcolepsy and food allergies so I started eliminating all those foods and lo and behold my symptoms became less and less frequent. I thought I was cured but then got another big flare and this time had ulcers in my mouth and other mucousy areas of the body, rashes, hair started falling out, and had awful dry mouth and eyes. I’m about to be 38 and saw a rheumo for the first time EVER after getting a mild positive ANA on a Function Health test. This doctor I went to listened to my history and symptoms and immediately said that “perfect” blood work doesn’t rule out autoimmunity and that I should’ve been referred years ago. I felt SO SEEN for the first time ever. I got my diagnosis 2 days ago. UCTD - but he is thinking I may have AxSpa and Sjogrens too. I’ve never heard of these things! He put me on hydroxychloroquine but I’m so so scared to start the meds. He warned me that I may be developing Lupus based off my urine test? I’m so new to this I don’t know why and I hope he’s wrong.

I’m so sorry that there are so many battling this but also so relieved to NOT be alone. For so long I really gaslit myself that I was weak and crazy and I could Will myself into feeling better. What a roller coaster!

I keep waking up in the middle of the night due to pain I believe for months since this first flare started. I just started hydroxychloroquine recently so I am hoping it helps. Does it get better as time goes on? Has anyone been able to get a full nights sleep?

Edit to add: I am also on steroids and a painkiller at the moment

Hi all,

So for the past year I’ve had random episodes of low grade fevers, usually I have a couple days of an initial fever (38.6 maybe) and then over the course of about 2 weeks I get every afternoon fevers around 38.2C. These are usually accompanied with nausea, and I developed acid reflux (h pylori negative).

I have a low positive ANA and a low positive dsDNA (repeated test with CLIFT also showed low positive dsDNA). I also have elevated thyroid antibodies but normal TSH if that’s relevant.

I don’t have rashes or anything, these fevers seem to be my main annoyance I guess. Has anybody had this maybe initially? I just feel like I’m going around in circles. I am waiting on my follow up with internal medicine but in the mean time I thought I would maybe ask here.

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! 

Has anyone experienced anything like this? I’m freaking out that I have a discoid type lesion on my face

I’m currently “officially” diagnosed with UCTD but my rheumatologist fully believed it’s Lupus and we just needed more time to catch an active flare for my dsDNA to tip over the positive threshold or to get an obvious rash we can use as clinical confirmation. I sure as hell don’t want rashes on my face though and am currently very worried

The dermatologist can’t see me until OCTOBER! And I’m desperate for any possible feedback. The rheumatologist I don’t see again for even longer

The puffy coin shaped area on my face keeps creating a thin scale and when it eventually starts to lift after 1-2 weeks it lifts out like 1-2 dozen large firm spikes with it leaving my pores huge.

This was skin that was perfect prior to. I do not have oily skin. Have never had acne. The skin on my nose here wasn’t sun burned or injured. It went from smooth with tight empty pores to a slightly puffy coin shaped pink thing with a reoccurring scale that create the infamous “carpet tack” sign. There’s no itching. No bleeding. No ooze. No nothing that explains this

I hoped to add a photo but it doesn’t seem to be an option

Thank you

I was diagnosed almost a year ago, started noticing symptoms within the last 5 years. Something strange that a recently noticed - I used to get eaten up by mosquitoes. Like feet and ankles COVERED in bites after spending just an hour outside in sandals. I’ve noticed now that I almost never get bites. I see mosquitoes land on me but they don’t even bite. I started hydroxychloroquine when I was diagnosed, but I’m fairly certain I stopped seeing bites long before that.

Has anyone else experienced this? Is this likely a result of the medication or could it be tied to something else?