r/mctd

Hi All,
I started having pain in my hands, feet, neck knees last January. I first I thought it was from aging (59 F)and cold weather. It progressively got worse. Went to PCP who referred me to a rheumatologist. Rheum doc started me on prednisone in March. Then hydroxychloroquine in April. I got some relief for a few weeks. Officially diagnosed in June with MCTD. Still taking pred,naproxen, and amolodopine for Raynauds. Most of summer pain was manageable until August. Then started low grade fevers and a lot of pain. Put on methotrexate in August. Dosage just upped to 15 mg. I’m still in so much pain. It hard to make plans because I don’t know how I will feel. I just want it to stop!

Howdy, I’m a 27M who was just diagnosed with MCTD by my rheumatologist after experiencing widespread joint/muscle pain, particularly in my neck, back, knees, and forearms, along with occasional skin hypersensitivity and breathing discomfort.

\*\*My bloodwork:\*\*
ANA: Positive
Anti-RNP: 2.2 AI (high)
ESR: 47 (high)
Creatinine: 0.90 (normal)
eGFR: 120 (normal)
AST/ALT: 16/17 (normal)
WBC: 6.8 (normal)
Hemoglobin: 14.1 (normal)
Platelets: 301 (normal)
\*\*I’ve never experienced Raynaud’s or swollen/puffy hands\*\*, which seems unusual for MCTD.
My rheumatologist was very confident in the diagnosis but didn’t explain much. She essentially said my labs and symptoms confirmed MCTD, compared it briefly to lupus, prescribed azathioprine 50 mg daily, and ordered a chest CT.
I’m wondering if anyone has had similar labs or symptoms, especially without Raynaud’s. \*\*Has anyone been misdiagnosed with MCTD or later had their diagnosis changed to UCTD or something else?\*\*
Not questioning my doctor’s expertise, just trying to better understand my diagnosis and hear other people’s experiences. Thanks!

I am diagnosed with Mixed Connective Tissue Disease (the autoimmune disease that is a cross between lupus, scleroderma, myositis, etc…) and have all the classic immune markers and symptoms but I have additional symptoms that do not seem to fit (drastic hormone fluctuations, GI inflammation, autonomic nervous system problems, reproductive organ problems, etc…)

I have an appointment with Mayo Clinic Rheumatology in Jacksonville coming up and I’m hoping they can get me treatment for the mctd but also find the cause for all my other symptoms. It’s been a complex diagnostic puzzle that my doctors at home just seem to no be interested in solving.

That being said, does anyone have experiences about their rheumatology clinic, and specifically Dr. Ronald Butendieck if possible they can share? What can I expect? Good or bad experience? Are my expectations likely to be met? I’m really nervous about being dismissed or left hanging medically again.

Hello All!

Hope everyone is well.

Trying to get my ducks (or opossums in trench coats) in order as far as supplements and was wondering what you recommend to help support joints and connective tissues? Currently taking a really comprehensive multivitamin and Vit D+K but feel like I could be doing more for the MCTD bits. Thanks in advance!

Keep kicking butt!

This will be my 3rd winter with Reynauds and I want to try calcium channel blockers. What is your experience with Nifedipine or Amlodipine? Are these helpful? Side effects? Does it mess with your BP?