r/mctd

hi everyone, I (17F) just 3 days ago got diagnosed with mctd. I had the markers for a long time and was being monitored, but when a flare up aligned with a blood work appointment (thank God) my rheum gave me the official diagnosis. (going on plaquenil soon, hopefully will help with all my pain) I have been using knee braces for a long time because of hypermobility, but lately I've had back to back flares and they just aren't cutting it anymore. I don't have too many problems with finger and wrist pain so I wanted to start using a cane. I talked to my rheum and she said that I should limit mobility aid usage as to not lose any muscle mass around my joints that's keeping me upright, but fuck it hurts haha. I was wondering if anyone else here uses a cane? and are there any other good braces I could use to limit fatigue? thanks so much 😁😁

Hi everyone, I'm from the UK. I just got

diagnosed with MCTD yesterday by my rheumatologist.

I've been seeing my specialist for three years regarding Sjogren's, but

she wanted to wait for consistently elevated RNP antibodies before officialy changing my diagnosis to MCTD with secondary Sjogren's.

She explained that will now need frequent lung and heart monitoring, and will likely need to start immunosuppressants soon.

There is a strong genetic component in my family. My gran had Sjogren's

and lupus, my aunt had lupus, and my mum and other aunt had/have

Sjogren's (my gran and aunts are sadly no longer with us). Despite knowing

this history, it still feels incredibly overwhelming today as I try to process

everything.

I thought I'd join this group for some support and to connect with others who understand.

Thanks for reading.

Hi everyone. I am honestly just looking for some support and to hear from others who have been through something similar.
My child is very young (5) and has been on Dupixent for atopic dermatitis for about 18 months. At the 12 month mark his ANA was completely negative. Sometime after that it turned positive.
His current picture:
• Persistent swelling and stiffness in his finger for over a year
• Very mild tenosynovitis in two fingers on MRI — no other signs of inflammation or joint damage found
• Ankle tenosynovitis last year
• Skin history with photosensitive features
• Elevated eosinophils and basophils persistently over several years
His labs:
• ANA positive in April, was negative until August 2025
• Anti-RNP: 1.2 in April 2026 → 1.6 in May 2026 (normal 0.0–0.9)
• C3, C4, CH50, ferritin all normal
• Inflammatory markers normal
What worries me most:
The anti-RNP went from 1.2 to 1.6 in just about 4–5 weeks. Has anyone ever seen their levels trend upward this quickly? Is this considered a significant jump or normal fluctuation?
We have a rheumatology appointment coming up and I am also wondering whether Dupixent could be driving this through the Th2 to Th1 immune shift since his autoantibodies only appeared after starting it.
I am a worried parent just trying to understand what we are dealing with and find others who have navigated this. Any experiences or insights are welcome. Thank you. 🙏

Yall,

I’m tired. I’m tired of waking up with a new symptom and I’m tired of having to find another specialist to add to my roster. I did not think MCTD would impact this many body systems, and I especially didn’t expect them to keep coming one at a time over the years…

I’ve developed severe dry eye from the inflammation, and Restasis was prescribed. It’s yet ANOTHER medication to remember to take.

I’m really exhausted managing this many specialists; pain doctor, rheumatology, cardiology, neurology, pulmonology, dermatology, now ophthalmology. I’m resigned to the fact that MCTD affects every single fucking bodily system and I’ll just keep taking fistfuls of medications until I croak.

For the past few weeks I’ve been feeling nauseous from all the medications I take. I want to cut back on some, but I honestly don’t even know where to start- which doctor to bring this up with? Rheumatology since that’s kinda what’s controlling my life now or my pain doctor since that’s one of my biggest issues?

I feel completely consumed by this disease and what it takes to “manage” it… I don’t think I’m managing it very well honestly. I thought I could handle it when I first got diagnosed, maybe because I was just happy to have an answer, but now I’m just overwhelmed. My life has changed so much, I’m disabled some days by it, and other days I’m ok. I’m turning 32 in a few weeks and am trying to find a job that can accommodate my physical needs and all my appointments.

It’s tough out here, especially because people outside this subreddit don’t understand this disease at all 😞

Hi, I have been having many debilitating symptoms for years. My ANA has been positive since I was 15, my Thyroid Peroxidase Antibodies came back positive recently as well (then negative two weeks later?). I have swollen fingers, joint pain, low grade fevers, shortness of breath (and moments where my oxygen gets quite low, it's a bit scary), face and body rashes, sun sensitivity, fatigue and pain flares, hair loss, vision problems, raynauds syndrome, gastrointestinal problems (like reflux and multiple hernias that have had to get repair, hypermobility/subluxations, the list goes on. My rheumatologist has essentially said I fit a lot of conditions, but that it could be MCTD. This was the first I've heard of it. I've been on IVIG for a few years (which has made a lot of my autoimmune bloodwork change over the years, even during flares). He ran bloodwork and my RNP is negative. My ANA from a few weeks ago is positive. Would IVIG possibly be interfering with my results? Wouldn't it have to be positive to get a diagnosis? I would really like to have a diagnosis/treatment that truly helps. I'm very tired of not being believed.

Edit: my initial logic and question was that if the IVIG was helping treat what is going on (which it has helped some) especially given the fact it is donated antibodies, could it change bloodwork? I still have very abnormal bloodwork, but some of the levels have varied quite a bit since starting IVIG, and my RNP levels were tested for the first time 2 years after starting IVIG. I don’t know whether it could have interfered with a result because I don’t know what the initial result would be. Some of my results disappear and reappear during flares, especially now that I’ve had the infusions.