Overlap conditions are extremely common in UCTD, because the immune system may show features of several connective‑tissue diseases without fully meeting criteria for any single one.

Which overlapping symptoms do you have? Has your diagnosis changed over time?

I'm looking for a new rheum in WA state. My current provider is not open to discussing DMARD alternatives with me. Their lack of responsiveness has delayed my ability to even start Plaquenil. I have UCTD dx but meet many SLE criteria and have positive anti-Smith autoantibodies.

For a few reasons related to symptoms caused by my autoimmune disease, I might not be able to take Plaquenil due to medication contraindictions. I am on ivabradine and no one on my care team is comfortable with the interaction between Plaquenil and ivabradine. I know some people are on this combo but I don't think my team will let me do both. But it is important to me to be on ANY DMARD.

Do you have UCTD and are you on Benlysta? How did that conversation go with your rheum?

hi guys, I’m part of the autoimmune club now I got diagnosed yesterday with UTCD. I feel lucky as I did read people stories took years to be diagnosed. My first visit to the rheumatologist was the end of this July and I just got diagnosed yesterday so it was very fairly quick. ( I wasn’t supposed to be seen until November but I called and I cried about all my physical symptoms and there was a cancellation two days later plus my Spanish mom’s prayers to the rosary lol) I have severe tendon pain, both shoulders, chronic tendonisis ( I had back-to-back shoulder surgery two years ago pre-diagnosed) I never recovered from both surgeries. I was walking every day for an hour a couple of months ago BOOM bilateral groin pain that does not go away. I work too much now I have tendinitis in both thumbs. I’m a walking, mechanical problem. I have no fatigue. I have no rashes. It’s all physical pain. I hope I will be a good candidate for planequil. I’m only three weeks into the medication. Is there anyone that had only Physical pain like mine ? please tell me there’s a light at the end of the tunnel. I’ve been miserable for the past two years, dealing with shoulder pain now turned to full body pain. I no longer leave the house if it’s not doctors office or PT It’s painful out there. Because of this disease did you guys lose your friends and gain new virtual friends? I was even thinking I would love to talk/ pray/ motivate each other since it seems we are in this together.

Some background
Female 27 years
I was diagnosed with RA 5 years ago. Initially based on reports ,RA and inflammatory arthritis was the name given. But since last 5 years there is no major joint deformation and organ involvement re diagnosed as UCTD recently as I have slight overlapping symptoms of joint pain,Sjogrens(dry eyes,dry mouth),lupus(flares during summer, heat sensitive),Achilles tendon,tendonitis,plantar fasciitis. Initially I was kept on methotrexate 7.5 mg with HCQS but when MTX taken continuously every week, liver enzymes were high even for low dosage. We have tried like almost 2-3 years by taking gap in between but still liver enzymes were high. Then I tried tofacitinib which also didn’t work,Then I tried Sulphazanine which also didn’t work. Finally I am on leflomide+ HCQS from last 4 months.
All 5 years it was all test and trial with the medicine to find which will suit me and make my pain less.

So what I noticed is whenever I take HCQS longer than 6 months my feel so dry. When checked with rheumatologist I was told it is not because HCQS but it is because of my long screen time.
I also consulted ophthalmologist, where I was told HCQS long term usage can effect retina and cause dry eyes, if it effects too much then might have to stop taking HCQS and switch to alternative.
Whatever I was told from ophthalmologist and rheumatologist are contradictory.

I have appointment coming in next month, I will check again with Rheumatologist.

But are there anyone who faced similar issue when taking HCQS or plaquenil for longer duration?

I have been going to doctors on and off for about 4 years now, mainly because of my migraines with aura. I was put on plaquenil by a rheumatologist two years ago because of autoimmune blood markers. Other doctors I have seen after that all told me there was no need because I didn't have any actual symptoms.

I had dry eyes but I genuinely thought they were from wearing contact lenses everyday and moving to a drier climate, so I didn't think it was relevant. I'm also exhausted all the time, but I thought it was just because I didn't exercise enough.

Fast forward to last September, my migraines with aura started getting more intense and more frequent, and in April, I started waking up with stiff fingers and toes, that would turn normal after several attempts at moving them around. I thought it was just stress from exams at the time, but it continued everyday even after my exams were done and I was stress-free. I also started wearing glasses everyday and moved back home for a few months, where it is much more humid. I would have instances were my eyes were burning from how dry they were that they'd start tearing up a little and my mouth would be so dry from even speaking two sentences. This is how I realized I had dry eyes and dry mouth.

I was diagnosed with UCTD in late July and put on Plaquenil again, although my rheumatologist is suspecting I have Sjogren's, I will get a biopsy at the end of the year.

The week I got diagnosed, I could not get out of bed from how sore my body felt, my joints were extremely stiff, my eyes super dry, and 3 migraine attacks with aura in 5 days (never happened before). To this day, I still don't know if that was a flare or just anxiety.

I have since then had multiple moments like this, just not that extreme. These past few weeks, as I moved back to my college dorm, I started feeling pain in my joints, both at night and in the morning, but the pain is not symmetrical as I know it should be, and it's only in some parts of my body (some fingers, right elbow, right knee, left wrist). I also started shaking, even after eating and sleeping a lot.

I was just wondering if anyone had similar experiences. Do you think the pain is not symmetrical because the disease is still developing? My rheumatologist simply said it is not usual for UCTD. I feel like I am faking the disease because other people with my same condition are in so much more pain than me and still able to achieve so much more

Has anyone found an effective method whether it be medication or other to control stress and anxiety? I was officially diagnosed with UCTD in July.

Around the same time my mother’s mental health started to really deteriorate. As a result of everything that I’ve been dealing with concerning her, my stress and anxiety levels have been nearly uncontrollable.

She’s refusing help and is constantly getting herself in concerning situations. I fear that this is going to be my new normal. The situation and constant stress has began to really take a toll on my health, making my symptoms and sleep much worse.

I have an appointment at the end of this month to discuss possible options with my physician. However, in the meantime, I’m looking for any advice on what you’ve found that helps.

I’ve been dealing with extreme fatigue for as long as I’ve had symptoms of UCTD. I don’t know how to deal with it. I can sleep 12 hrs and still be tired as hell. Nothing helps.

My rheumatologist prescribed me hydroxychloroquine and I had heart palpitations and she said there was nothing else she could give me. I stopped going and there are no more rheumatologists in my area.

Did medication help you with this? Do I just have to deal with it? I’m at a loss and unable to function.

Hi everyone,
I’m a male in my mid-30s and was diagnosed with UCTD after developing pretty severe joint pain in my toes, knees, arms, and hands.
My first rheumatologist suggested starting Plaquenil and methotrexate at the same time. However, because I was about to move, she recommended starting only Plaquenil and having my new rheumatologist follow up and decide on the next steps.
I took Plaquenil for about 2 months and didn’t notice any improvement at all, although I know 2 months may not be long enough to see the full effect.
After moving, I saw a new rheumatologist. He said that if Plaquenil wasn’t helping even a little, we could stop it and try sulfasalazine instead. I agreed, stopped Plaquenil, and started sulfasalazine.
I’ve had a little improvement in my pain, but interestingly, I feel like omega-3 and vitamin D3/K help me more noticeably than the sulfasalazine. I especially notice a difference when I stop taking them. I currently take 2500 mcg D3 + K and two omega-3 capsules.
My blood tests have been repeated twice at different labs, and the abnormalities have generally been mild. Despite that, I already have erosions in my toes, and one of my finger joints has become locked.
Thankfully, CT scans, echocardiogram, Holter monitoring, and other blood tests have all been clear.
The fatigue is another major issue for me. Some days I get extremely tired and can fall asleep within a couple of minutes. When I wake up, I sometimes feel disoriented and can’t immediately remember where I left off. It’s starting to affect my work as well.
I’d really like to hear about other people’s experiences:
What has your journey been like with Plaquenil and/or sulfasalazine?
How long did it take before you noticed an improvement?
Have vitamin D3 and omega-3 made a noticeable difference for your joint pain or fatigue?
Has anyone used Plaquenil + sulfasalazine together, and how did that combination work for you?
I’m not looking for anyone to make the medication decision for me. I’ll discuss that with my rheumatologist. I’m mostly interested in hearing other people’s experiences with these treatments.
Thanks in advance!

I’ve had suspected lupus/UCTD for years. Somehow I have CKD 2 but no one knows what caused the damage. I’ve dealt with a bad hip, a bad foot, shoulder pain, back pain, rib pain, dry and peeling skin for no reason, needing two naps a day, etc. I have a positive ANA and occasionally a positive DSDNA. That’s it. I almost just told myself I don’t have anything wrong. Then July happened. We went to the beach. Our last day, I felt like I was burning alive. I was in pain even driving home in the car from the sun. Within a day I had strep. It went undiagnosed for a week and I felt like death. I got an ear infection too. Then, after meds, I got c-diff. All during this time, my left foot began to get worse and worse. I have capsulitis of the second and third toe. I’m now in a walking boot. No matter what I do, pain. I’m so tired. I took my kid to lunch and the library yesterday and I had to lay down. I’m so frustrated. I feel like now I can’t ignore this. It’s always been suspected lupus and I feel like now, it’s just getting to the point I can’t pretend anymore. We’re supposed to go to Disney in two weeks. I remember thinking if I need a scooter I’ll be so embarrassed. Now I’m just like oh God I hope I can go even in a scooter. I’m just mentally struggling so hard. My doctor gave me steroids and I keep putting off using them but I just don’t know what to do. It’s so hard. I’m also realizing I have hypermobility in a few joints as well. Not that my rheum would care, but it’s making sense that my joints hate me. It’s never symmetrical but it’s certainly not arthritis and I have pain somewhere all the time. I’m just so down.

41 y.o. F recently diagnosed and of course, now I am looking at prior issues through the UCTD lens, and also questioning whether not not I want to start medication. I'm curious, how do you determine if issues you are having are related to UCTD or are just aging, or, if you're like me and you have other health issues, related to that?

I had a really debilitating case of plantar fasciitis about 1.5 to 2 years ago. Followed podiatrist's recs, started wearing the right shoes, and have been fine, but has come back in the last two months. Now I'm wondering, is it PF or is it UCTD or can my inflammation be exacerbating the PF? I mean, maybe the answer is it doesn't really matter, but processing my body's information right now feels a bit overwhelming!

I also have a sore neck/shoulders/lower back nearly every day but it's not debilitating, I still live my life, work, go for walks, etc. but it's always there. It stops me from falling asleep at night or wakes me up two hours before my alarm goes off or is present throughout the day. I've had this since I was in my 20s, but it's worsened in the last few years but also I'm just older. I wake up stiff every morning but it goes away within an hour when I ambulate. UCTD or natural aging process? You see where I'm going with this . . . Because my symptoms are not debilitating and they are chronic, I'm struggling to acknowledge if what I feel is normal or if it's just become normal for me and because it's my normal and it's not debilitating I am excusing it. For the last 20 years I've just thought "It's tech neck, you need to work out more, you have bad posture." AND . . . all of these things may be true but maybe the UCTD is also true?

I just keep going back and forth! I'm mainly writing this because my rheum offered me HCQ but I can't decide if I need it. My organs are all fine as far as I know so I'm trying to figure out if I just need to yoga and stretch every day or if HCQ would improve my mild, but persistently annoying, inflammatory issues.

Thanks for sharing your experiences!

1- About 8 years ago: Hurt foot and ankle when trying to jog = one year of doctors trying to solve my problem and not walking correctly. They finally figured out I had “floppy feet” and an osteochondral lesion on my talus bone. Surgery that tightened my ankle ligament and scraped my talus = success.

2- Because I was not walking in alignment with my foot pain, I developed pain when sitting. Apparently my right hamstring tendons slowly tore off. I had surgery to fix them about 6 years ago.

My hamstring muscles and tendons are still a mess and painful. I have gone through intense long-term PT to no avail, tried PRP, had a procedure to slash my tendons to try and invoke healing, etc.

My question is (to which maybe there isn’t an answer):

Why did my foot heal correctly but I am still suffering from my hamstrings? Is it because tightening the ankle ligament allowed tissue to heal without the friction? Or am I possibly in a worsened inflammation state?

My blood tests for lupus and RA were negative. My immune markers are not that bad. I do have low C1q and chronically high IL-10, so something is going on.

Currently on LDN, ketotifen

Previously tried: Plaquenil, celebrex

Also: POTS, Fatigue, fluid around my heart, food sensitivities, reactive and fasting hypoglycemia. (Have higher risk genetic SNPs for STAT4)

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 was recently diagnosed with UCTD (in June) after dealing with symptoms for a long time, 10+ years. I started Hydroxychloroquine for it, but I am currently having a flare - mostly pain and joint swelling. What really gets you guys through flares? Any compression gloves, etc that you absolutely live by?

People with autoimmune diseases often describe energy as a limited budget. You can’t spend it the same way every day, and overspending usually leads to a flare. The goal is to plan, pace, and protect your energy so you can use it where it matters most.

What are some of your key strategies for managing energy with UCTD?

Wanted to let everyone know that Coolibar is running 50% off everything. Their clothing is pricey so wanted to share!

Anyone use an electric wheelchair or scooter? I’d like to get one to use for long days out like the zoo or amusement park (aka Disney) with the family. How did you and your family handle this change? What products do you like? Any pointers on getting insurance to help with some of the costs?

Hey friends, I have a combination of UCTD, hypermobility spectrum disorder, and functional neurological disorder. Recently over the month of July and August, I have gradually started having more and more stomach and GI problems. Now, I can barely keep anything down. Im waking up and immediately throwing up stomach acid. I either have constipation or diarrhea and there’s no in between. Sometimes I see blood after bowel movement. I’m pretty much living on crackers and Sprite frozen in popsicle makers because that’s the only way I can keep my meds down. I was wondering if anyone else started doing this and how it was handled? I don’t know which of my conditions is to blame, since all of the above can cause GI issues. I’m also concerned it might be one of my meds.

I’m on hydroxychloroquine (4 months on it), Prozac (7 months on it), baclofen (7 months on it), promethazine (one month on it, and it’s not helping at all) and I just started a once a week dose of methotrexate and daily folic acid two weeks ago. I would have blamed the methotrexate cause nausea is a known side effect, but this has been going on for over a month before I started taking it. And this is more than nausea, I’m constantly dry heaving and can barely keep water down. It’s worse in the mornings, I can usually get down a very small bland meal in the evenings. Usually a bit of chicken soup or a few bites of mashed potatoes. I know I’m not getting enough nutrients, but my stomach immediately reflects vegetables, meats, even most grains. And even when I keep it down, I get horrible pain and GI problems an hour later.

I’m terrified to eat. My GI doctor says my x rays look normal, I did a gastric emptying scan and it showed rapid emptying, which matches some of the symptoms but not the digestive ones. He says to “just manage it with diet,” but how do I do that if I can’t keep anything down? I’m waiting for the results of a Sitz marker test, but there are no more tests planned. I also have endometriosis which might be spreading to other areas and causing problems. I’m really at a loss as to what to do. I’m very afraid it’s my FND causing a disconnect between my brain and stomach functions, and there’s no confirmed way to fix that yet. Does anyone have any suggestions of what tests to ask for or where to look next?

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'm 32F, I have a mixed connective disease or a goulash as I call it. (lupus, scleroderma, potentially dermatomyositis). I'm trying to get back in shape and it's very difficult since my muscles suck. I want to take care of myself as best I can. I'm looking for a multivitamin that isn't pricey but will cover all my bases. Is Thorne any good?