I got diagnosed about 1.5 years ago with UCTD.
Have been on HCQ since.
Shortly after getting diagnosed, I started getting very frequent headaches, and these are bad painful episodes sometimes lasting over 2 days.
Has anyone else experienced this ? Could this be HCQ side effect? Is this an indication of some form of disease evolution ?
My rheum does not seem to give any serious heed to this.
It seems that most people with CTD feel stiff in the morning and tend to get better as the day goes on.
I’m the exact opposite. I’m currently in a flare. I usually wake up ok, and then as the day goes on I get incredibly fatigued and my joints become increasingly stiff and painful. By evening, all of my muscles are aching and I can’t function anymore. Is anyone else in the same boat and how do you manage? I’m on a prednisone taper, but it’s not helping as much as I had hoped.
Hi! I've posted here before I'm 20F newly dx with UCTD trying to make sense of my experience. I started using a cane shortly after diagnosis as my main symptoms are joint pain and fatigue. My knees are particularly bad and I have fallen many times. I've tried toradol, Prednisone and celebrex which have all helped but are not permanent solutions. I had planned a vacation before I got sick and the vacation has tons of walking in a big city. My church offered to pay for a rascal carbon cruiser foldable power chair to use for trips to museums, airports, vacations, etc. My physical therapist said that using it for the vacation was a good idea. But I feel weirdly guilty? Like using a wheelchair when I can walk. I have such severe fatigue I don't leave house as much as I used to and struggle with daily tasks. My mom comes over to my apartment to help me with chores and my boyfriend helps me with mental tasks (I have serious brain fog). I feel so seriously disabled by this condition I'm barely functioning right now. I think the wheelchair would give some independence back but I don't know if I'm being dramatic. Does anyone here have experience with mobility aides or anything of the sort? What helps?
I was recently diagnosed with UCTD in December 2025 the rheumatologist tried to put me on hydroxychloroquine 100mg and I did research on it but wasn’t sure how I felt about it so I didn’t take it and decided to get a second opinion. I went to another rheumatologist and she then told me I didn’t have UCTD only fibromyalgia. I’m working on getting a second opinion at the moment but wanted to share my symptoms and see if anyone can relate or anything like that. I had previously went to an endocrinologist to check my thyroid but they stated everything was good that I had Hashimotos antibodies but definitely didn’t have Hashimotos. I assumed my symptoms were from thyroid but after clearing that I went to a rheumatologist and in December and got diagnosed. I recently did a body scan and was told my thyroid had some calcification along with it being too thin along with bone density loss. I also need to get a bone density test done. Thank you for taking the time to read this and any advice you may give.
Positive ANA 1:320 homogeneous pattern
Slight inflammation but I’ve been on an anti inflammatory diet since January gluten free and dairy free.
Severe fatigue
Migraines
IBS-which I never had any problems using the restroom ever.
Joint pain
Muscle pain
Morning stiffness
Bruises very easily
Sensitive to cold
Brain fog
Depression
Dry hair and skin (I get lifted severe dry skin on my face)
Trouble sleeping
Nausea
Loss of appetite
Hi
I will start ivf treatment soon and also diagnosed with UCTD. I want to ask how was your treatment without any medicine, as i am not using any yet. Will use aspirine and plaquenil only during pregnancy as advised from doctors. (Ssa positive ana positive rest are normal) my question how is it went during hormone treatment, most of the doctors says this is like a hit or miss, either people are feeling completely fine and also in remission during pregnancy or a huge flare with real disease development happens especially during hormone treatment phase. Quite scared here to be honest.. please let me know your experiences.
What are we doing to prevent crashes from days with a lot of exercise? I have UCTD, hEDS, POTS , and very strongly suspected MCAS as well as a few other issues. I’m very grateful to have been able to remain fairly active primarily through at home Pilates and walking my dog, but I really do miss being able to do more strenuous exercise. I don’t otherwise have many symptoms that would suggest MECFS thankfully, but if I try to go on a long hike or anything like that I’ll feel great during it ( I’m on medication and crazy amounts of electrolytes for my pots which really helps with the exercise intolerance) but then I’ll literally feel like I’m coming down with the flu the next day. Has anyone found ways to prevent these insane crashes?
Hi so I'm currently waiting on a rheumatology appointment to investigate why I have strongly positive ACA and I feel like my symptoms fit UCTD pretty well. I was just wondering if anyone with UCTD had a whole host of gi symptoms like i do including bloating, stomach pain after eating, diorreah and nausea while still having an endoscopy that didn't show any visible inflammation?
Firstly, I know everyone is different. But please chime in where you can.
I was diagnosed with UCTD (and told, “your symptoms are identical to Lupus, but there are specific criteria, and I can’t diagnose you with Lupus right now because you don’t meet them.” The main reason being a good one — my organ function is fine!) in December 2025.
Been on HCQ just under 6mo now. Added Sulfasalazine mid January, and have been on maximum dose for 2.5mo.
Reacted poorly to steroids, Meloxicam didn’t help me (was still in pain from writing and typing at work while on, so he ruled it out). Using Tylenol and 1% topical Voltaren right now.
Noticed cognitive improvement after 3.5 mo on HCQ. Fatigue is kind of better now, too, but still a major issue.
Still in pain that disrupts sleep, makes it nearly impossible to complete & maintain household tasks, and I cannot work more than about 20hrs/week without having a major flareup and crash out.
Venting/BG you could probably skip:
Even those 20 hours are brutal, and I used to be able to work OT without batting an eye. Historically, I’m a super active and driven and disciplined person; now I feel like a shell. Took me about a year to get diagnosed, but symptoms worsened over 3 years before becoming nearly debilitating. That last year was when it was so bad I had to seek help.
I’m 24. I carried a heavy box of dishes 3 days ago and have been in severe pain since. I can’t play instruments anymore without struggling to work the next day, often I physically can’t play at all.
Again, I’m in so much pain I wake up often or simply can’t fall asleep, and then everything snowballs.
I know all of these meds take a long time to work. I’m discouraged and worried.
TLDR:
Struggling with daily life and can work 20hrs/week max (with difficulty) and am in near-constant severe pain.
How long did it take for you to see improvements?
What should I expect?
Do I need to advocate for reassessing my treatment plan (my next appt isn’t for almost 4 months)?
If this is normal and you’ve seen great results with more time, okay. Helps me to hear that, too!
But if I need to course-correct, I want to ASAP. Even like…should I ask about Celebrex, etc.?
I am having to manage all these health details completely alone. It’s a lot to figure out when I’m already struggling to function/make ends meet.
Insight deeply appreciated!
I just got my UCTD dx and I'm feeling very drained. It was not an overly long process, but it was very frustrating. I still feel that my diagnosis is conservative, as I have a positive ANA (1:1260) and anti-Smi, which I think should put me on the side of SLE. I have fewer symptoms at this time in my life so I think that's why the rheum is erring UCTD rather than SLE. I have had more symptoms at other times. I'm just ready to start Plaquenil. There was no time for patient education so I actually don't know what I'm supposed to do other than what I've read online.
Questions in no particular order:
Hello! Has anyone experienced Plaquenil worsening POTS (postural orthostatic tachycardia syndrome)?
hi- i have elevated RNP, ssdna and dsdna. (and ANA positive.) my rheumatologist says I have the signs of future active CTD but no diagnosis right now. he said there is no lifestyle intervention to prevent active disease. can this be true? I’m specifically thinking about nutrition.
I also have ovarian failure and am on estrogen, which I know can trigger it, but I need it. :/
What is the potential for GLP’s?
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!
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)
Has anyone with cataracts have had a connective tissue disorder???
What kind of precautions or risks did you have??
Have you had to have a lens exchanged?
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.
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
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.
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 😊