MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story....4 Weeks ago I was diagnosed with Mixed Connective Tissue disease...I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I'm married...so I have a lot going on and this has pretty much put a stop on everything...I'm on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day...Some days I'm fine and other days I can't get out of bed either because I'm so tired or I'm having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I'm losing my mind and body for that matter.....Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me....HELP

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Langold | @rarelybees2889 | May 29, 2023

Thanks
Knowledge is power
I am trying to understand it better too

Langold | @rarelybees2889 | May 29, 2023

In reply to @rarelybees2889 "Thanks Knowledge is power I am trying to understand it better too" + (show)

Also Hugs to you...

kayabbott | @kayabbott | May 29, 2023

In reply to @starbright "Thank you. My liver and kidney and neurological symptoms are now being affected. I don’t really..." + (show)

I caught covid in March and it hit my cardiovascular system. EKG signals indicated possible previous heart attacks. I had a nuclear stress test that ruled them out as artifacts (no damage, just how my heart is wired). If you haven't had a stress test for verification, you can even get one without the treadmill/bike part. I've had autoimmune diseases starting more than 30 years ago. It is a challenge to find things and friends to escape with. Covid and autoimmune diseases are very isolating.

wkd | @wkd | Jun 5, 2023

In reply to @kayabbott "I caught covid in March and it hit my cardiovascular system. EKG signals indicated possible previous..." + (show)

Dear Kayabbott: Question. Did you get the vaccine previous to the Covid? William

kayabbott | @kayabbott | Jun 5, 2023

In reply to @wkd "Dear Kayabbott: Question. Did you get the vaccine previous to the Covid? William" + (show)

I am fully vaccinated and got the booster 6 months before being infected. I was hit with a large viral load (sitting next to the covid positive cyclist for 2 hours) and glutened at the same time (celiac), so a double cytokine storm. Being older with some autoimmune diseases likely means my immune system isn't as sturdy as a younger person. My stress and other tests all came out negative for any damage, so I'm good to start ramping up the exercize.

wkd | @wkd | Jun 5, 2023

In reply to @kayabbott "I am fully vaccinated and got the booster 6 months before being infected. I was hit..." + (show)

Dear KayAbbott: My concern is that maybe the cytokine storm may have been due to the vaccine and not the disease. There are so many reports of vaccinated people have blood clots and other strange heart symptoms. It is truly an issue that we know little about. Glad it worked out well for you. William

kayabbott | @kayabbott | Jun 6, 2023

In reply to @wkd "Dear KayAbbott: My concern is that maybe the cytokine storm may have been due to the..." + (show)

The covid vaccines and booster for me resulted in minor inflammation that went away within 3 days. I had fever and chills for the first Moderna shot but just a bit tired for later vaccines and boosters. I have a few autoimmune diseases and suspect my covid hit wouldn't have been as bad if I hadn't been glutened the same day as covid exposure. I know that there is a very minor risk of reaction to the covid vaccines, including increased blood viscosity. I've had two friends die of heart attack/myocarditis after getting covid, and two others with heart damage. I wonder if some of the blood clotting risk could be minimized by taking aspirin or other blood thinner when getting covid or vaxxed/boosted? CDC, NIH, and Nature all have online risk/benefit analyses of getting vaccinated/reactions. Unfortunately, most people don't know how science works (I was a research scientist) and this combined with miscommunication/misinformation has resulted in some distrust of science. The distrust started a few decades ago with climate science politicization. Or actually, centuries ago when scientists reported things people don't want to hear.

piperleah | @piperleah | Jun 7, 2023

I have found it officiate too. I have not starany meds yet. Almost thru a bad flare up. I advise you to rest WHENEVER possible. You have to take care as no one understands. It’s debilitating when you are in one. You have to cut back on everything else or you don’t get better. Good luck.

bayhorse | @bayhorse | Jun 7, 2023

In reply to @kayabbott "The covid vaccines and booster for me resulted in minor inflammation that went away within 3..." + (show)

Thank you for your comments. I am so tired of the covid vaccine being blamed for everything under the sun. I have heart disease, lupus, celiac disease, & ulcerative colitis, and have been successfully vaccinated and boosted. My body REALLY didn't appreciate the first Moderna shot -- I was sick for more than two weeks with fever, sore throat, swollen glands and exhaustion, and my vaccinated arm was red and swollen. But I continued with the series because the prospect of getting COVID on top of my other illnesses seemed like a sure death sentence. With each successive shot my side effects diminished, and I now have had my second booster with no side effects at all.

margey | @margey | Sep 5, 2023

In reply to @mlew0731 "Hi! I'm newly diagnosed with MCTD. I'm 32 years old, married and gave two young girls...." + (show)

Nighttime is hard. I take a marijuana gummy for sleep. My rheumatologist helped me get the medical marijuana license..

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