r/UCTD

I know that any answer received here will have a huge bias (usually, forums are more populated by people who are in worse condition).

But my question is very simple: is remission really possible?

With remission, i mean being just like your old self (or very near to it), with or without the meds. So basically no symptoms.

I keep reading on studies (especially on UCTDs) that 15-20% go into remission.
Same with Lupus or other CTDs: lot of doctors talk about "sending into remission" with meds.

So my question is:

Did you ever go into remission?
Or
Are you into remission?
Or
Do you know someone that went into full remission?

Note: Obviously i'm not talking about good days or good weeks, but prolonged periods of full remission (months to years).

Thanks!

(P.S. In order to make things more clean, i would suggest to keep the answer short, but that's only an advice, feel free to write whatever you want)

20 f. I was recently diagnosed r/t ana 1:1280 centromere pattern, severe joint pain, facial flushing, extreme fatigue. All my sub-serological workup were negative so I got a UCTD dx. I am now disabled and can barely work part time, I am really struggling. I read that UCTD typically has a mild clinical course but I am scared that if this is mild what the hell is severe. I started plaquenil a week ago, currently take 200mg celebrex bid, 650 ER Tylenol bid, am currently on a Prednisone dose pak and got a toradol shot a few days ago. I'm starting physical therapy and see my rheum in 3 months. Can anyone shed some light or offer any advice?

edit: and recurrent pleurisy + costochondritis

Hi!

Does anyone else experience a tingling feeling all over? Not quite like what it feels when you say your “foot fell asleep”, but more like to the touch. It feels like I have a mild sunburn and just heightened sensation when I touch my skin or when someone else touches it? I haven’t really had this symptom before and it’s quite new to me. I’m wondering if I’m having some weird flare.

Hello everyone,

I was diagnosed a week and a half ago after eight months of trying to figure out what's wrong with me.

The rheumatologist looked at my fingers with a microscope and immediately knew I had an autoimmune disease. He said I have UCTD unless one of the tests pop back with something more specific. The tests didn't.

He put me on hydroxychloroquine and now I'm here.

I suffer from anxiety that can drive up my blood pressure and/or heart rate. Although since being on the medicine it seems to have mellowed out.

I'm also more commonly dealing with fatigue, weakness, and paresthesia. I used to have head pressure but that seems to have gone away. Brain fog nearly all the time trying to remember what I'm doing at my job or at home.

I also have an enlarged spleen and scarred liver but not sure if that's related or not.

Anyways I can't wait for my meds to actually kick in so I can start feeling an ounce like myself again. Or at least have more good days than bad.

I had some friends with autoimmune diseases and have been able to lean on them for support so I'm lucky there.

Just checking to see if anyone has a similar set of symptoms with UCTD.

Many of us know the cycle: try a new medication for 2–3 months, see if it helps, stop if it doesn’t, and start another one. We do this all while dealing with side effects, frequent lab work, and navigating the insane costs of many of our meds.

How do you manage this process?

What side effects have been dealbreakers for you?

Have you fought with insurance to get the treatment you needed?

Tell me the good, the bad, and the ugly with your meds.

This isn’t meant to be fear-mongering. Always consult your doctor for medical advice and before making any medication changes.

Buongiorno 🌞 sto assumendo Plaquenil da quasi 3 mesi e mi sto ponendo una domanda che giro a chi invece lo assume da anni: quale qualità di vita devo aspettarmi? Tornerò come ero prima della malattia o avrò comunque dei fastidi? Una risposta da parte vostra mi servirebbe anche per capire se effettivamente sto avendo benefici o no. Grazie a tutti 😊

Around November, I started having some issue eating. I eat a very clean, whole food, plantbased diet. But there are several days where my abdomen is painful or tender or I feel like I don’t want/can’t eat. Some days I don’t eat or I just get down a nutrition supplement. I’m losing weight. Seeing the doctor soon.

Has this happened to anyone?

Has anyone else had a quick response with plaquenil?

I have UCTD & dysautonomia (orthostatic hypotension & inappropriate sinus tachycardia). I started plaquenil earlier this week 200mg twice a day, and while I dont feel amazing, I have noticed some differences, and i feel like im crazy for noticing them this early.

The two that I've noticed is my insomnia has seemingly cleared up out of no where, im suddenly getting 8 hours of sleep a night, and waking up feeling rested??? I dont have fatigue??

Granted, I dont think i was in a horrible flare when i started it, and I havent noticed a difference with my sicca symptoms, pain or rashes yet, however I have noticed these.

This is more of a rant than anything. I am so freaking tired.

When I first started seeing rheum a year ago my labs were just off enough to get a referral. I have an extremely extensive, generational history of autoimmune disease. My joint pain, fatigue and stiffness have increased drastically over the year. I got pregnant in October, and I am due next month. Baby is really healthy which is a blessing. OB is leaning toward induction because of UCTD and chance of placenta detaching early but I obviously do not want to induce unless it is 100% necessary due to the pain and potential complications that come with it.

My glucose test bloodwork was also run with a general bloodwork panel, and it looks like my body is fighting or was recently fighting infection or inflammation. My OB NP said it's just pregnancy, but I literally begged her to send it to my rheum. I told her it doesn't make sense to have labs come back this elevated or depleted even with the pregnancy without some sort of interference like an infection/inflammation etc. She did end up sending it. Still have not heard back from him. I understand he can't poke and prod a pregnant woman as much as a normal patient and I will get more testing done after baby is born. I am hoping for a more definitive diagnosis but at the same time that scares the heck out of me. He put me on plaquenil in July 2025, and I have only gotten worse. He won't take me off it until after baby is born which is understandable.

I can hardly move my fingers, and nothing makes the pain go away other than a temporary cold bath (which hurts like heck. I have extremely low tolerance to cold.) My skin looks mottled and my feet are purple a lot more than usual. I am so fatigued I feel unsafe driving to work anymore. I want to cry my eyes out every second of the day.

To top it off, I have really bothersome sensory issues, and I get overstimulated so easily that I will shut down. I have no idea how I am going to make it until the end of June. If anyone has advice or words of encouragement, please send some my way. I can't do this anymore.

Does anybody else get extremely painful cramps in the feet, ankles, and legs? Cramps doesn’t feel like the right word. I got it so bad in my foot one night that my toes got locked into this folded position and it felt like they were going to break when my partner tried to “unfold” them. When the spasms hit, my legs kind of lock up and I have to massage everything like crazy (painful) for a long time before it subsides. If I move at all it starts up again.

Driving me slowly insane. Any info or suggestions would be so appreciated!

Has anyone experienced an improvement in their labs but a worsening of symptoms? I am at my wits end. My symptoms have progressively worsened but my labs have improved. My most recent lab tests show a negative ANA, negative ribosomal p protein, and a normal CRP. My ESR has come down drastically.

However, my symptoms have worsened. I’ve had to triple my Gabapentin dose to manage the nerve pain. I’m sleeping 12+ hours. My hands are experiencing more joint swelling.

I don’t know what to do at this point and I am just so tired. I want answers, I want more symptom management, but my labs aren’t reflecting whatever is happening.

I’m curreny on hydroxychloroquine that helped for about a year, then I got the flu that flared really bad and then had surgery and flared really bad. New Raynaud‘s Syndrome. Currently hanging out with UCTD diagnosis. 5 years ago I originally tested positive for SCL-70, but ended up being negative last panel. My Rheumatologist suspects Lupus and wants me to start on Biologics. She stated if panel proves something else, I would still start on Biologics anyway due to progression and symptoms and most connective tissue disease are treated similar. I’m just wondering if my panels are negative would but positive ANA again, Biologics still be approved. I have elevated C3,C4. Elevated Sed-Rate and CRP.

Hi!

I recently began a new job (3/4th week rn) & my doctor gave me an ada letter that is very much necessary. It basically says give allowance for dr appointments and occasional flare ups. I also asked for breaks as needed, flexibility, and dress code accommodations ( i need compression leggings & stuff). My parents said to not give it but like I already had to call out bc of a really bad flare up ( i luckily had emergency steroids) & my pcp is really kind and wrote me a doctors note. So when should I notify them? I'm kinda scared to do it but legally it would protect me.

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