r/UCTD

Does anybody else have this problem? Any ideas for solutions? I’m about at my witt’s end.

It’s July in Texas. It is hot and I want to swim without burning. I’ve tried different shirts and different sunblocks but none really seem to work well.

29 (F). Dxed about a year ago. Does anyone have experience with muscle and nerve pain?

I’ve recently had pain/tingling in the shoulder and neck muscles/nerve pain in this area that radiates down my arms, along with what feels like returning GERD symptoms as well. The muscle pain is strong enough that it has been causing intense headaches that run up the base of my skull. (I’m sure, from the tension)

I know Dr. Google is no good. But I’ve been poking around, and have noticed that my symptoms align with Thoracic Outlet syndrome. Does anyone else have similar symptoms, and been diagnosed with TOS? I am having a hard time telling if this is just general inflammation, or something else. I have no clue if UCTD and problems with thoracic nerves and veins overlap at all. Thanks in advance for any input!

Let me start by saying that my Rheumatologist is an excellent doctor and actually treats UCTD rather than taking the “let’s see how it goes” attitude. Now, having said that, I’m absolutely perplexed at her telling me I’m stable. Granted, my inflammation is normal whereas it began at 29.5, most of my blood work is normal now, but I keep having issues pop up. She diagnosed me as having UCTD with signs and symptoms of both Sjogrens and Lupus and said that she believes me to be in the beginning stages of Lupus. About a week ago, my parotid glands were huge and painful, beginning last month, both my ankles were swollen and are now to the point that I can’t hardly walk without sharp pains, both hands hurt when I grip anything, my fatigue is beyond horrible, and just this morning, my knees began hurting. Stable? How? In my mind, stable means no progression of symptoms and, to me, the connective tissue disease is wreaking havoc on my body daily. I’m completely confused. I’ve had multiple rounds of prednisone and take HCQ and Leflunomide daily. Regardless of being on these for months, my symptoms and issues continue to rear their heads. It feels like it’s something different every day. How is that stable?

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 found anything that helps with their fatigue? I'm on plaquenil, try my best to get good sleep, and am trying really hard to implement energy conservation techniques.

I started drinking coffee again which has actually helped quite a bit 😅

Edit: I am at 1 month of plaquenil and am excited for when I get to 6+ months to feel the full effects!

If anyone has supplemental ways to support fatigue I'd love to know your experience!

I'm trying to do more self care/stress mgmnt (dry brushing, relaxing hobbies, foot soaks, massage), journal, keep in touch with friends as the mental fatigue of FOMO with life also exhausts me.

Hi!

I been under rheumatology for the past 7 years for chronic pain. In the past (nearly) 3 years, I began to experience flares which were seronegative but which clinically made all of my consultants think "SLE".

My rheumatologist said to me "I cannot think of an explanation for this other than SLE, but that is unthinkable given your negative ANA". I've been in clinic with malar rashes which spare the nasolabial folds, heliotrope rashes, angioedema, uticaria, ischemic ulcers, proteinuria, haematuria, leukocturia, bilibinuria, ketonuria, etc. I have objective neurological, dermatological, renal, gastrointestinal, and mucosal involvement. The only organs that are completely unaffected are my heart and joints. Everything else is at least "touched" by the inflammation.

My autoantibodies (I've had a lot of testing) are always negative, but recently my bloods seem to be "catching up" with my body. My complement was normal 2 years ago; now I have low C4. Oddly enough, what's made my doctors begin to settle towards "lupus prodrome" rather than "non specific, could be random" is that my calprotectin went from 100 to over 400 in a month recently. I know that there has to be an objective serological basis for diagnosis, but it baffles me that through the years of seizures and fevers and rashes and swelling enough to close my eyes, the tipping point is that.

I really hope that this can be over soon, and that I can get treatment so that this can go away. I know rheumatological conditions, especially intermittent prodromal ones, often take years of monitoring before diagnosis. But I feel closer to a "precipice". I feel like it's becoming more and more clear in my tests, and to be honest I'm relieved, because I'm exhausted. I feel in a strange liminal position where in all of my appointments everyone says "SLE" and "autoimmune", but nothing is on my record, and there's no treatment, just observation until the next emergency.

How long did it take you to get diagnosed, if you have been, and what was it like?

I have been on hydroxychloroquin for 9 months and every now and then I have flare ups which yes I know would happen. It comes in many forms but this one... My hands have been really bothering me for a week now and I have tried ice, heat, Tylenol, aleve, ibuprofen and nothing seems to help. I bought compression gloves which seem to take the edge off a little but with temps well over 90° Its to hot to wear them out. They feel stiff like someone slammed them in the car door. Every little knuckle/muscle/nerve hurts.

I have reached out to the Dr but believe they are on vaca this week and I just want some relief.

Does anyone have something that works for them?

TIA

Hi everyone! First time poster, recent lurker. For a few years, I’ve dealt with hair loss, vertigo, back pain, Reynauds, rashes in the sun (not on my face, just my legs), mouth sores and inflammation flares (swollen lymphnode, swollen gums etc) when I get really tired or worn down, and constant extreme (to me) brain fog and mental fatigue. I used to be a social butterfly but the idea of having to do things is exhausting. I used to pride myself on being intelligent, now my brain feels like a sieve and I have a harder time making mental connections (this used to be my sort of “superpower”). I thought my ADHD was getting worse and tried switching up meds but nothing really helped. Doctors mostly ignored my concerns, saying it looks like I have plenty of hair (for reference, I am half Black and have voluminous hair, but it isn’t dense), and kept telling me to drink more water when I mentioned vertigo even though I tell them I actually love water and easily drink 100 ounces a day. ANYWAY. Got a new PCP, she ordered blood work and everything seemed normal except for large RBC and a very high ANA (1:1280) with a nuclear homogenous pattern. More definitive tests (sjorgens, protein, lupus anticoagulant, etc) came back all within normal ranges. I then went to see a rheumatologist who looked over my test results, touched my joints and said he thinks I don’t have lupus or anything but that my issues could be coming from multiple ailments that are yet to be determined/diagnosed. He then said something to the effect that he could diagnose me with UCTD but it doesn’t really matter nor would it mean anything to me. It’s just helpful for researchers. He sent me on my way with a follow-up appointment in 6 months. Is this normal?? Should I push for him to diagnose me with UCTD? BTW I’m a 40 y/o woman.

Any time I get even one mosquito bite it makes the entire limb itch. Bug bite thing, steroid creams — they do nothing. I have to immediately take Benadryl or vistaril or else the bites will swell to the size of tennis balls or grapefruits without even scratching it. It’s torture. I just went outside and sprayed myself down with off. Still, I have 8 bites and my whole body itches. I’m couch bound just switching an ice pack from bite to bite. Anyone else get this?

I am in the worst flare I’ve ever had. I pushed myself way too hard cleaning for company, and now it’s hard to sleep, eat, and keep food down. Everything hurts.

Have you ever been nauseous during a flare? What do you do to combat the symptoms?

Hi! I have really been struggling lately with fatigue, joint pain, mouth & nose ulcers, chest pain, etc. I'm sleeping 11+ hours a night unintentionally and am only able to work part time.

I'm currently on these meds:

Robaxin prn

Low Dose naltrexone 1.5 mg at bedtime

Celebrex 200 mg twice daily

Plaquenil at bedtime

Arthritis strength Tylenol 2-3 times daily

I am really struggling and I need to get back to working full time - I cannot pay my bills consistently and I'm constantly pulling out of my savings. I'm only 20 years old. I recently got dx'd with UCTD but I am very concerned about lupus because of some new symptoms I've developed. I work as a nurse so it's a strenuous job. I've genuinely felt suicidal at times - I get so depressed not being able to work much or leave my house as much as I'd like. I've spent entire days in bed from the fatigue.

I messaged my rheumatologist asking about a shorter acting medication to bridge me until the plaquenil starts working (I've been on it for 1 1/2 months) Maybe low dose Prednisone or something. They don't want to try anything different and want me to wait until for follow up in August. I feel like I can't live like this. Please help!

Hi,
I recently was diagnosed with UCTD from my rheumatologist after getting a misdiagnosis Of SLE from an urgent care doctor. I was started on Plaquenil by my urgent care doctor and have been on it for about 1.5 months. My main symptoms are a rash but it seems more likely to be rosacea as I’ve had it for almost 10 years. Other than that I have some fatigue and some joint pain, nothing intense so I’m not sure if it’s just from aging/ inactivity. My rheumatologist says I can come off Plaquenil since we’re not sure what I have. My tests that came back positive per my rheumatologist were “low level” anti smith and a positive ribosomal P antibody. My qualitative ANA originally ordered by UC doctor was positive but my repeat ANA by IFA was negative so my rheumatologist is not concerned. I am also seeing a dermatologist now to be treated for rosacea. So I guess after all this I’m quite confused and unsure if I should stay on Plaquenil since we’re not sure what I have and if it is indicative of early lupus or anything like that. She says Plaquenil is not necessary since it does not prevent me from getting lupus in the future. She did say originally I could stay on it for 6 months to see if it makes a difference in my symptoms but after these repeat labs she says I can come off.

I know the medication doesn’t have many side effects other than potential retinal issues and increased skin sensitivity. But to be honest I’d prefer to not be on it if it’s not necessary. I guess I just kind of scared myself and thought it was absolutely necessary to prevent damage to my body since I was originally diagnosed with SLE. Any advice?

(Also some inflammatory markers in UC were high but I did get a five day course of steroids which improved it. But my rheumatologist said steroids should not change my ANA).

Medications tend to impact everyone differently, by my world has been absolutely rocked by hydroxycloroquine. (This has also happened temporarily from prednisone too 🤪 but that healed and I tried plaquenil only to experience this again, but worse)

It destroyed my GI. I dropped weight so fast (12% of my body weight in a few months), developed esophagitis and gastritis, experienced chronic excruciating pain from my stomach and esophagus. Even high doses of PPI and sucralfate could not manage the pain from the reflux to my esophagus.

My rheumatologist caught this, the side effects of this severity was rare. But it’s my reality. So currently I’m unmedicated and having labs watched closely..

I’m too afraid to try any more meds, she recommended leflunomide (ARAVA) soon and the side effects look worse than hydroxycloroquine. How could this be any better?

I felt destroyed, like I was dying (starving, dehydrated, unable to get out of bed from the GI complications at times)

My stomach is already improving since coming off the med and sticking to an extraordinarily strict diet under the watch of a gastroenterologist (still on a ton of stomach meds too).

I still need to be examined for gastroparesis but now that I’m improving I feel hopeful that this was a side effect from the hydroxycloroquine…

I’m so exhausted. What really sucks is how much the med helped. It damn near put my occipital neuralgia nerve pain/ chronic migraine in remission.

Has anyone else ever experienced this? What meds could possibly help put this disease at bay without completely obliterating my stomach 😭
I’m also open to holistic options.

Hi!

I was diagnosed with UCTD back in feb and I have been taking 200mg of hydroxychloroquine everyday. However, I ran out of my medication a week ago and I’ve gone to the GP but they’ve taken a week to reply and told me to obtain it from the consultant who prescribed it.

I’ve just been told I’ll have it after a week. So in total it’ll be 2-3 weeks of no medication.

What does that mean for me? How will that affect me? I am quite worried. if it wasn’t obvious yes I am dealing with the UK NHS.

I am hoping to get pregnant in the next two years or so. I am a little worried due to the medications I'm on which are hydroxychloroquine/plaquenil and duloxetine/cymbalta. My rheumatologist pretty much said, "Yeah, you're fine on those go for it," and was essential unbothered and nonchalant. My GP recommended I go to a specialist as I'm approaching a "geriatric" pregnancy (I am 32).

Any UCTD moms out there with any insight on conceiving, childbirth, flares, pain, or would like to share their pregnancy journey?

Has anyone found any relief with certain supplements, massages, tools, etc.

I've been looking into turmeric, lymphatic drainage massage, etc. to help my UCTD symptoms.

I have a heated wrist band and gloves that have been amazing for pain mgmt.

I'm on plaquenil which had been helpful, but I'm only a month in.

this is my first post here, so pls tell me if i need to add something specific. i was diagnosed in february this year with undifferentiated connective tissue disease. im a 25 year old hairstylist and i realized that i was coming home from work feeling exhausted and in pain. my body ached and my head felt foggy all the time, but i brushed it aside thinking that it was normal thing because i had been on my feet for so long. i started getting rashes in august of last year, went to an allergist who brushed aside my other symptoms and told me i only had allergies, a gastroenterologist who did an endoscopy thinking i had celiac (which i tested negative for) when that didn’t work, my pcp sent me to a rheumatologist who diagnosed me and put me on hydroxychloroquine. i’ve been taking it consistently and i have felt better for the majority of the time except for the last 4 weeks where ive felt extremely tired and the joint pain and brain fog has gotten even worse. now, for the past 4 days i have had a very sore throat and terrible body aches, the side of my neck is swollen and it sounds like i have something stuck in my throat when i speak. ive tested negative for any kind of flu, covid or strep and that honestly triggered the feelings i had when i was being sent to a bunch of different doctors to get my original diagnosis. im not sure if this is a weird flare up, or just a virus but i’ve just felt really sick and hopeless for the last couple of days. does anyone have similar flare ups or is this worth mentioning to my rheumatologist during my next appointment?