mixed connective tissue disease and life expectancy

I was (mis)diagnosed with RA in 1990 when I was 20. Correct diagnosis (MCTD) came in 2008. I've never taken the lifelongmeds for it, just Tylenol, very restrictive diet & lifestyle and a lot of luck. But in 1994 it was getting worse and I read about Dr. Brown's antibiotic protocol ("The Road Back"). I found a doctor at Cleveland Clinic willing to try it. I took tetracycline-relative Minocine daily for about 18 months when my Rheumatoid Factor and SED rate had dropped to normal range. I was in sort of a remission for 10 years, just getting 24-hr flare ups sometimes. Never any degeneration in joints and able to live sort of normal life. Pregnancies were hard on me but now kids are 7 and 10. Just last year I had a change in symptoms becoming permanent again. So yes, I think odds of remission are excellent with the right treatment and careful management of diet and lifestyle. I had 18 years without debilitating chronic pain and even at 45 hope I will reenter that stage again, even if it takes going back on the antibiotics. FYI, the big drawback of that treatment is Herxheimer effect where pain is terrible all over for an unspecified period of time and one day you suddenly just realize you feel much better. It took a couple of months for me.

I have had MCTD with RA,OA,IBS, Fibromyalgia and psoriatic arthritis since 2003. I am 38 years old and recently had a heart attack due to inflammation of the arteries going to my heart. My doctor has told me that once the disease reaches your heart, lungs and liver that the prognosis is 2 years. I hope with the new advancements in medicine I will live to see my children at least graduate from high school. So to answer your question it depends on how much you can slow the progression of the disease before it hits your major organs.

I have had MCTD since 2003 and I take Celebrex 200mg BID, Prednisone 10mg 3x day, Orencia once a week and an infusion 1 every 3 months, Norco 10mg 4x day, Plavix 1x day flexeril 20mg BID now not everyone has to take all these meds but my case is considered acute. I take the Plavix because I use to be on Humera but it caused me to get polycythemia vera a rare blood cancer so be careful with the biological.

This all just starting for me. I also have back issues. My degenerative disc disease , I have had for 3 years. Its a crazy ride. So please hang in. I'm also having my ups and downs. This is also the first time on any site like this

This is also all starting for me too.  My Rheumatologist app't is in a week, I've waited for about 3 -4 months, I tested quite high for MCTD with nothing else showing up but I have a 'rash' on my face and all over my arms.  As well, during Xmas I just got diagnosed with cervical degenerative disc disease as well and that pain is constant, my CT scan is on Sunday to see how severe it is.  I also have Celiac disease.

How many autoimmune diseases can one person have?  It's frustrating!

I have mix connective tissue disease and sometimes it can be very hard to live with because you can experience swelling on the knees and fingers....and your fingers will change colors because the blood is not flowing properly.....

I have MCTD , CREST ,and Hashimoto , Hashimoto for 13 years now and the rest for a year now . How are you doing ?

Hi. Thank you all for posting here.  It makes MCTD a little less scary. I am newly diagnosed, but have been trying to figure out my symptoms for years. In the process, I had the ALCAT test. It tests your blood to see what foods cause reactions from severe to mild.  i eliminated gluten and yeast among other things and the difference was significant. My Rhuematologist opted to let me go six months without medication to see if diet eliminated most of the symptoms. When I follow that, my symptoms are significantly decreased. Just thought I'd share in case it helps anyone.

Hello Sandra, hopefully you still check this page. I have had MCTD since I was 14, I am now 54, so 40 years...I don't have the life expectancy on this disease as it was only documented as a disease since 1972, so difficult to say. But if you've only had it 3 years, I would say you have another 37 to go. :) most important thing is to find a really good doctor that listens, as this disease is not the same for everyone. Some have more symptoms of one disease over another. It is a very difficult disease no two ways about it. Hope this helps.

Hi, I was diagnosed with Mixed connective tissue disease recently, my syntoms are bad, like every body else with this disease, so nothing seems to work, so this is what I did. : I change my eating habits and life style by becoming vegan, gluten free, organic, non GMO. And hot yoga. I warranty that this will help you, it have been helping me a lot a lot a lot. I feel normal again . Thanks God that my life is becoming normal again. Email me if you have questions.

I have mctd also, and what it's helping me is that. Being vegan, and hot yoga, gluten free and organic.

Hello! Email me and we can talk. I have had MCTD almost 11 years. I'm doing very well.

it is very very important to have a good doctor, routine appointments, and live a healthy lifestyle which includes diet, exercise, positive attitude, and no stress. For me, I have to pray to keep from worrying about what tomorrow may bring in the form of unwanted circumstances. Everyday I thank God for healing me from MCTD. I have been doing extremely well and getting better and better. Diagnosed 2004 but had symptoms at least 8 years prior. Really no telling how long I actually had it. If anyone wants to talk, please email me. I'm starting a personal blog/website where I talk about MCTD to provide emotional support, encouragement, and hope to others. One thing I want to say to you all. STOP calling it your disease, instead say you were diagnosed with ........ There's life and death in the power of your tongue. Just speak life over your body my friends. God bless you and keep you in good health, yes, even with a diagnose.

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Hello my name is Meka I have mctd can u plz text me I'm 36 and I swear my body is going crazy and I need someone 2 confine in about this disease...thx alot

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There are a lot more positive posts on here recently saying what can help those diagnosed with MCTD to feel better.  Thank you for that - it is exactly what I was looking for and I will try some of the tips. My current issues are difficulty climbing the stairs and drying my hair! I am going to try releasing stress and hot yoga to see if that will help. I would particularly like to know if anyone else with MCTD is still skiing, running or horseriding and maybe how you built up to be able to do these activities again.