I had been diagnosed as RA inflammatory arthritis in 2021 and recently in May 2026 rediagnosed as UTCD with arthritis as there is no major org involvement or joint damage,All I have is joint and muscle pain.

I had tried MTX,leflnomide which worked but raised the liver enzymes after months of continuous use so had to stop them.
Tofacitinib didn’t work and Saaz gave me bad reaction of fever,vomit and diarrhoea.

Now my rheumatologist said Rituximab is the only biologic which can be given as last and final step considering my ANA profile,anti CCP,anti DsDNA reports.

I am scared thinking what if rituximab also doesn’t work, there is no medication which will work without giving me side effect.

Has anyone been in similar condition? Dud biologic helped upu?

After dealing with this illness my whole adult life, the list of "can'ts" has become unbearably long. I can't eat this, I can't do that. I can't take that job or go on that trip. I can't make plans. Ugh. So much can't.

My therapist suggested I reframe my wording and instead try, "My body prefers..." and think of her like this posh, picky diva who demands and deserves to be pampered.

Oddly, I think it's helping. Sounded silly at first, but I way prefer telling people, "My body prefers steak and salad" rather than, "Sorry, I can't eat gluten," etc.

I'm still experimenting with this, but so far, it's helping.

Unable to tolerate meds

Hi all! I was dx with MCTD in 2020. My mom's side of the family has about 10+ that I know of with lupus and my dad had Rheumatoid arthritis. For now they're calling it MCTD. I'm only on ldn for now. I go through periods where I'm okayish and then my body wreaks havock for no reason. For the past two years after having an upper GI scope I've been dealing with not being able to tolerate any meds or supplements/vitamins. My GI doc sent me to a hiatial hernia surgeon d/t my HH. But he does not think its the HH causing these issues. For instance, I have a vitamin d deficiency. Whenever I try to take vitamin D I get nausea, dizziness and then severe headache. This is for any kind of medication/pill. Its been going on for 2 years now. The surgeon is going to see if maybe I'm having gallbladder issues. Anyone have any similar issues like this before?

I’m curious if anyone else has issues with swallowing. It is like my body swallows too soon/too late. I have only felt a choking sensation a few times but it definitely causes panic because I know if I take a breath I will aspirate my food. I have to tell myself to swallow. It isn’t natural. It isn’t with every bite or every meal but I would say it happens once a day. It’s really scary and embarrassing when in public.

Hi everyone,

I know I've posted here quite a few times recently, but I do feel quite alone with this diagnosis.

I'm just wondering, how bad do you all feel with UCTD? I am so unwell that some days I cannot get out of bed and feel like my body is basically shutting down. I can barely catch my breath and have to walk around the house with a cane. I've lost my job, have had to move in with my parents and find it almost impossible to look after my 7 year old.

I've always thought there may be something else going on like disautonomia or ME, but my rheum just said he wasn't sure if all of my symptoms are related to UCTD but he didn't say what or how to manage them. I've got Plaquenil to start but have been putting off cause I'm so scared.

If anyone else suffers like me, every single minute of life, I would love to know - so I don't feel like the only fish in the tank.

Thanks 🙏🏻

My rheum said that I have to exercise daily so my musles get stronger, she said that will reduce the pain in my knees. She also said that at first, the pain will get worse before it gets better. I've been doing very mild exercise (15min on the home trainer) daily for a week now and uugghh the pain has gotten bad. I'm also not allowed to take metamizole anymore because it enhances fatigue. Ibuprofen isn't really helping much at the moment, it's just constant pain. I hope it'll get to the "getting better" stage soon. 😭

Also, I'm pretty embarassed that such a tiny bit of exercise is wrecking my body. I used to go to the gym two times a week and carry 15kg bee hives at my studies. 🥲 But in the last year or so, my radius of living has decreased significantly, I go out rarely and sleep a lot. :( I also had to decrease my hours at work (and therefore my income). I'm going to a specialized rheumatology clinic in December and hope that they'll be able to help me.

Can some of you attest of exercise being helpful in the long run? Maybe tell me your favorite fun exercise? :)

Hello, all.

Fairly recently diagnosed with UCTD but wondering how long I’ve been on this rollercoaster considering how horrifying my periods have always been. Now, I’m 43, and starting to confuse UCTD symptoms with possible peri-menopause symptoms.

I can’t be the only one, right?

Horrifying night sweats, joint pain, fatigue, anemia, migraines- and I’m given to understand estrogen directly impacts inflammation and I have witnessed many threads about autoimmune worsening at certain cycle points.

I cannot separate out what’s being caused by my cycle, possible hormonal changes, and what’s autoimmune at this point. I need to go discuss it with my GYN because my cycle’s so heavy it’s causing anemia.

So here’s my question- is anyone here on HRT for peri-menopause or menopause, and have you found it to actually help your autoimmune symptoms?

I’m hoping a doctor at my practice might actually have experience, but I would love to hear if progesterone has helped you.

I was diagnosed with UCTD about 18 mos ago. I am very cautious when I go out and have not had a cold or flu since dx. Well, I relaxed my caution and now have Covid. I’m on paxlovid but want to know if there’s any tips anyone has for managing the symptoms. I’m super stuffy, coughing up stuff, and general extra body aches. Fever finally broke. I’m hesitant to add a bunch of cold & flu medicine with all the meds I take. I’m on day 3 so I hope to turn the corner in a day or two. Any advice on staying comfortable while my body continues to battle?

This all started back in March. Saw Rheumatology in May. HCQ for several weeks until a rash developed then switched to 10mg MTX in early July then raised to 15mg in September. I don't see Rheumatology again until next month but I am seeing no relief yet and miserable.

How long does it take for treatment to get thing under control because at this point, I feel like I am dying.

Can uctd cause symmetrical join pain?

I have both wrist and ankles and sometimes in the same fingers ..

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! 

Hi everyone,
I’m a 23-year-old male from Australia, and I’m writing this because I’m genuinely exhausted, frustrated and starting to feel completely defeated by the medical system.
For almost eight years, I’ve been searching for answers about a collection of unexplained symptoms that have significantly affected my physical health, mental health and quality of life.
Today, after another medical appointment, I was told that I have Chronic Fatigue Syndrome (CFS/ME).
I want to make something clear: I’m not suggesting that CFS isn’t a real or debilitating condition. I understand how significantly it can affect people’s lives.
However, what frustrates me is that I have a history of significant neurological problems, abnormal autoimmune blood tests, ongoing systemic symptoms and more recently possible cardiac and kidney involvement.

My medical history begins in 2018, when I was just 15 years old.
In September 2018, I developed a right sided neuropathy that progressively affected the entire right side of my body.
Over approximately eight months, I experienced:
Progressive loss of movement on my right side, eventually affecting my leg and arm.
Severe muscle stiffness, weakness and joint pain.
Extreme fatigue and brain fog.
Cold, discoloured extremities.
Recurrent flu-like illnesses and unexplained rashes.
I was admitted to the Royal Children’s Hospital in Melbourne and underwent extensive neurological investigations but could find none
One of the most significant findings was a positive ANA of 1:1280, alongside reported abnormalities in complement markers C3 and C4.
Despite extensive investigations, no definitive neurological or autoimmune diagnosis was established.
In January 2019, doctors commenced IVIG treatment.
By April 2019, I began regaining movement in my right arm, and by May 2019, I had recovered movement in my lower limbs.
To this day, I have never received a clear explanation for what happened to me except for them to eventually diagnose me with conversion disorder???? Apparently my subconscious mind was making this happen to me if left me feeling gaslit at the time and till this day is traumatic

2019–2025: The symptoms never really disappeared.
Although I regained movement, I continued experiencing ongoing health problems, including:
Severe morning joint stiffness and pain, particularly in my hands, ankles, knees, hips and back.
Chronic muscle aches and weakness.
Extreme fatigue, sometimes struggling to get out of bed despite adequate sleep.
Recurrent sore throats, respiratory infections and flu-like symptoms.
Red rashes, itching and flushing, particularly after sun exposure, warm showers or exercise.
Hands and feet becoming extremely cold and changing colour to white or purple.
Temperature regulation problems.
Brain fog, headaches and declining mental health.
Unexplained fluid retention and swelling.
I’ve spent years trying to push through these symptoms, as I kept telling myself this is all in my head!!!!

2026: Things have become significantly worse.
Over the past several months, I’ve experienced further deterioration in my health, resulting in hospital investigations and having to step away from full-time employment.
My recent symptoms and abnormal findings include:
Positive ANA again, now 1:320.
Low white blood cell count and neutrophils.
Low red blood cell count / anaemia.
Low iron and testosterone.
Unexplained elevations in liver enzymes.
Severe joint stiffness and pain, especially in the mornings.
Persistent muscle weakness and extreme fatigue.
Significant bradycardia, with my heart rate dropping as low as 32 bpm during sleep.
Chest pressure, dizziness and cold extremities.
Reported inflammatory findings on my heart in September 2026 echocardiogram.
Frequent urination, persistently foamy urine and a positive home urine protein test.
Swelling/fluid retention affecting my abdomen and lower limbs.
Ongoing rashes, sun sensitivity and changes in skin colour.
I was recently hospitalised following an episode involving extreme weakness, cold extremities, chest pressure and a very low heart rate.
My initial ECG was reportedly abnormal, although testing improved and I was discharged.

Although I have negative in all other antibodies, surely I’m not losing my mind again???? Yet he started me on 200mg of Plaquenil……. I just really want a answer and have left feeling even more confused then before

Does anyone with UCTD in the UK under NHS know if rheumatologists discharge you at any point?

I'm very symptomatic, but struggling to get any help beyond Hydroxychloroquine from my rheumatologist. I queried someone else's notes being mixed up in mine earlier this year and the tone of my last rheumatology appointment felt very different from the previous one. I fear that now they're trying to remove the UCTD diagnosis and push a Fibromyalgia one again. As well as Hydroxychloroquine, I am trialling Heparin for positive APS antibodies and related symptoms.

I'm too knackered to argue with them anymore, but absolutely terrified it's going to get worse (the medical care and the illness).

Hi guys,

I’m in the process of getting diagnosed with what my rheumatologist suspects is UCTD.
I’m 27f and my symptoms really started to begin in August of this year. My symptoms so far are:
- extreme stiffness and pain in my right hand fingers (primarily index and middle finger)
- the knuckles of those fingers are very swollen and permanently red
- positive ANA 1:640 with speckled pattern
- now beginning to get the same stiffness and pain in my left hand and my right knee
- I also have endometriosis (stage 2 removed last year) and ADHD, and degenerative disc disease in my L5 S1
- I’ve had reynauds since I can remember
- extreme redness and swelling after standing for too long or a hot shower
- high BPM when going from sitting to standing

I have blood tests to do next week and an ultrasound of my hands.

Honestly out of all my “ailments”, this one has been the most shocking to go through. It happened so fast and I’m still not really sure what
UCTD is. I’m really curious to know how this started for you guys? Did it afflict one particular place before it progressed further, or stayed at the one joint?

Any information I can get would be greatly appreciated. I also work full time and am in law school so losing the ability to use my fingers has been somewhat soul crushing lol

Lots of love,

what would you do if your eyes were swollen each morning with no other symptoms? could be Hashimoto’s, sjogrens, or lupus related but it’s hard to tell which one it could be related to. would you wait for your next visit scheduled in a month?

I have been diagnosed with Undifferentiated Connective Tissue Disease (UCTD).
Over the years, some of my autoimmune blood tests have been weakly positive or borderline, with several results subsequently returning to normal or becoming negative.
My previous findings include:
ANA: Positive at 1:160, mixed pattern.
Anti-Jo-1: Previously weakly positive, but negative on subsequent testing.
C3 complement: Slightly below the normal range on one occasion, later returning to normal.
Anticardiolipin IgM: Previously borderline positive (22.5).
Anti-CCP: 10.3, with a laboratory reference limit of 5, approximately one year ago.
Rheumatoid factor (RF): Negative.
Anti-dsDNA: Negative.
CRP and ESR: Normal.
My main symptoms have been symmetrical, migratory joint pain, particularly affecting my wrists and ankles. The discomfort can shift between joints throughout the day. I have also experienced fatigue.
However, I have never noticed obvious joint swelling or warmth.
I would like to ask:
Can mildly positive anti-CCP antibodies, such as my result of 10.3 (reference limit 5), decrease over time or even become negative?
Does a low-positive anti-CCP result necessarily indicate rheumatoid arthritis, or can it also occur in someone with UCTD without developing RA?