How do you cope with Mixed Connective Tissue Disease (MCTD)?

...update....got a rheumatologist! yay! and she ordered more tests. so far the few tests I have seem to show abnormal levels but not super out of range. Tell that to my symptoms! lol. Sjogens though she thinks.
My PCP has me on LDN . In 2 more months I will see if there is any diff. otherwise, prolly back on Hydroxychloriquine per Rheumatologist.
I try to walk at least 8000 - 10,000 steps a day. Last week on one day, I did 16,000! I just wanted to accomplish SOMEthing like my old competitive self. But cratered these last 2 days. I feel so much better when I am moving, I do not want to stop. Does one have to pay for a little exertion? I am talking about just WALKing and spread throughout the day. No heavy breathing etc.

I was diagnosed with CTD 5-6 years ago by my gastroenterologist but not by my rheumatologist. My symptoms from GAVE, anemia, and pulmonary fibrosis has my specialists somewhat uncertain how to treat me. So I carry on my life without added medications. I suffer from fatigue, chronic cough, loss of taste, and nasal drip but I manage them. Medication such as prednisone has been mentioned but thank you but no thank you.

I was diagnosed with CTD 5-6 years ago by my gastroenterologist but not by my rheumatologist. My symptoms from GAVE, anemia, and pulmonary fibrosis has my specialists somewhat uncertain how to treat me. So I carry on my life without added medications. I suffer from fatigue, chronic cough, loss of taste, and nasal drip but I manage them. Medication such as prednisone has been mentioned but thank you but no thank you.

I am Canadian. I have noticed that our treatments tend to be different than in the USA. Are you American? You asked me about my meds. They have changed
over the last 7 years. Right now I take teva-pregabalin, 1 Aspirin, Teva-rosuvastatin, Rosuvastatin Calcium, 1000 Mcg/Swiss Vit. B 12,1000Mcg. Act- Amlodipine Besylate, 5 MG.
More symptoms are leg weakness for awhile after I wake up
In the 🌄. Symptoms are also, eyelid twitch, heartburn like most people our age! Haha. I am almost 72.
My husband wants to check out ozone treatments in Toronto. Can't hurt.
As far as the dental connection and covid mentions, personally I think that could be going down the wrong path. Am I being too bold?😄
What is LDN?
I am so excited to meet another person experienced in the ways of Mixed Connective Tissue.
Disease.
Sincerely,
Charlotte

I feel bad for you...you have it much worse than me (for now). Exercise is recommended, but within limits... Don't overdo it. Plaquanil (hydroxychloraquine) has helped me a lot with dryness. issues, but the fatigue is harder to treat. It doesn't sound like COVID at all. Blood work should reassure you about the diagnosis. For me: sjogrens symptoms without you sjogrens antibodies, yet high rheumatoid antibodies: thus MIXED connective tissue disease. I do have some joint issues... not too bad so far. I also get lightheadedness and a lot of fatigue. They don't call it mixed or an overlap disease for nothing. Your ills are real and very difficult. Don't listen to well-meaning friends and relatives who diagnose and advise you, and frankly they don't know their ass from their elbow, especially the ones spreading vaccine and dental filling bullshit. People like that were complicit in the unnecessary deaths of hundreds of thousands from COVID. Stick with a top rheumatologist, try the meds ( I have NO side effects from plaquanil) . Get prescription fluoride toothpaste if you’re dry, and regular (every 3-6 months eye and dental exams to be on top of any side effects and prevent dryness dental decay. Biogenesis products for dry mouth and sustained eye drops help dry eye.

I was diagnosed with MCTD 7/2024. I have known for about 20 years that I have an autoimmune disease but my CBC was only slightly elevated, every time. My primary would order the cascade and ANA, THS, and all was normal. I always have rashes, digestive issues, dry eye, and I get horrible laryngitis every winter. I have been on steroids once or twice a year most my adult life to control inflammation.
May 22, 2024 was a normal day. After I ate dinner, I became super gassy and had explosive diarrhea. Nothing slowed it down. After two weeks taking Imodium by the handful chased by bottles of pepto, I went to my primary. My blood work was off the charts.
By July, I had 22 vials of blood taken, 6 x-rays, 2 CTs, and four stool samples. All the tests were negative, no parasites, no infections, no bowel blockages.
By end of July, my blood tests from the rheumatologist showed MCTD & my atypical p-ANCA was 1:40, I was advised I most likely have IBD. I already had a GI appointment.
At my GI I had my esophagus expansion done, I swallow so much better now. I was positive for H. Pylori, no current inflammation but he could see I had past inflammation. I finished my H. Pylori treatment, then had a round of treatment for SIBO.
I still have major gastrointestinal issues. My fatigue got better after clearing my infections. My peeling skin on my hand also improved.
February 2025, at my 6 mo f/u I’m expecting to see improvement with blood work. Nope, now my atypical p-anca is 1:80. My rheumatologist isn’t worried, just looking for something new that I may be positive for.
I hate prednisone and refuse to take it anymore. Since July, I’m only on meloxicam for MCTD, but we discussed switching to an immunosuppressant.
Today, my entire body hurts, every muscle, every joint. I took a two hour nap and feel worse. I’m hot but have no fever, my fingers feel puffy and tight. It’s like 7 degrees out and I want to stick my hands in the snow to help the swelling.
I just want to feel normal. I’m so tired of pooping countless times a day. I quit my job a few months ago and I don’t even want to look for work until I can have a somewhat normal bathroom routine. Most importantly, I want to workout without triggering pooping.
Oh, the best part, since last May, I have gained over 20 pounds. It’s so mind boggling, I’m literally not digesting my food and I’m gaining weight. I’m not eating much because everything upsets my stomach.
Thanks for listening and sharing your experiences. Any advice navigating is appreciated!

Becky,
I have had many signs overs the years, but my blood work never showed positive.
I have known since my early twenties that I have an autoimmune disease.I mostly controlled it with supplements like turmeric, l-glutamine, ginger, and vitamins. I don’t know what triggered this flare up but it’s the worst in my life. I quit my job because the environment was not good and my inflammation got worse.
I get all the bad side effects from prednisone. Weight gain, insomnia, anxiety, dry mouth, increased hunger.
I drink tons of water because my mouth is so dry I can hardly speak. I also try to drink my hunger away. It takes me about 6-8 months to recover from one round of prednisone. It’s really not worth it for me to take anymore.
I walk a mile or two every day, I do yoga every morning, and when the weather allows I ride my bike. My muscles hurt so bad that at times I feel like I was in a car accident. I’m a former competitive gymnast, I’m very used to muscle pain from training. What I feel now is like injury. It’s muscle, ligament and joint pain. I shouldn’t feel like this from yoga or walking.
Anyway, I may be switching to hydroxychloroquine or otezla. Have you been on either of these? What does it feel like to have your immune system suppressed? Prednisone makes me feel like I’m on speed and an overactive immune system is what I have known most of my life.