mixed connective tissue disease and life expectancy

Hi,
I know of Dr. Robert Franco in Riverside California and you can look him up on the internet. You can also go to the road back web site and they will send you a list of doctors in your area who use antibiotics. If neither of these suggestions work out, you need to study your disease so you can negotiate with your family doctor to prescribe a tetracycline antibiotic. In your case you would be a candidate for the pill, minocycline since you have not had the disease for a long time.
Carol

To the guest 6 days ago,
Dr. Robert Franco is in Riverside California and another doctor, Therese H. Yang, is in Sante, California. You can look them up on the internet and you can also go to the road back web site and they will send you a list of doctors in your area who use antibiotics. If neither of these suggestions work out, you can try to negotiate with your family doctor to prescribe a tetracycline type of antibiotic. Since you've just been diagnosed with MCTD, you might be a candidate for the pill, minocycline, since you have not had the disease for a long time.
Carol

Dear Happiseed,
I was also diagnosed with MCTD too, about 9 years ago. I also had raynauds and fatigue, I like the words, crushing fatigue. My rheumatologist put me on plaquenil too, within a month I had gotten a headache, and some floaters in my eye, and a small psoriatic rash on my lower legs. Having been a nurse I studied the medicines and I quit taking the plaquenil immediately because of the side effects.

I wanted to talk to others who had the disease so I went to the internet to find a share group. I found two websites that led me to Dr Thomas McPherson Brown, the road back and a rheumatic organization. Dr Brown studied autoimmune diseases and treated patients from the 1940’s -1980’s. There are hundreds of testimonies that his treatment with antibiotics worked. I asked my family doctor if I could take minocycline, he said that it couldn’t hurt me. Boy, was he surprised when I got better.

I still can't believe how rare the disease is. And it is hard to understand what mctd is because it affects most everyone differently. It is odd to have an invisible disease, although I do have some scars, my fingernails are brittle and they are shrinking, my right arm withered a little bit, so it is skinnier than the left one . I have found out that I need to continue the antibiotic because if I get off it too long, I get some kind of little symptoms. Keep in touch. Carol

Hi Saera,
My disease started in 2007, I was diagnised in 2008, so I've had the disease for 9 years. I'm in remission now. I take an antibiotic called Minocycline which keeps me in remission. I had raynauds (freezing fingers and toes), carpal tunnel (numbness of fingers), rotator cuff (tear in shoulder), and extreme fatigue. I believe I had lung involvement, I was diagnosed with asthma but I know I've never had asthma. I also have dry skin and dry internal passages. I've never had severe muscle and joint pains. I get slight joint pains. But everybody is different that has MCTD. I suggest to you that you go to websites: roadback and rheumatic org or that you get the book The Road Back and you will find out about a doctor who spent his life dedicated to the treatment of rheumatic diseases. There is a cure! Carol

Hi brandyerie,
That means you've had MCTD for almost 30 years. I was diagnosed when I was 60 yrs old and I'm 68 now. It's good to know that you feel that diet and rest have helped you so much. I know that I should eat healthier. I was a nurse and studied medications alot. I know that people get dependent on steroids and that steroids can have bad side effects and they can cause many problems. It does sound like you've had a good internist, and he has helped you very much. I suggest that you should study the antibiotic therapy and ask him if you could try it. You can read about alot of people who have written testimonies that they have had remission because of taking an antibiotic. thank you for sharing your story. Carol

Hii carol
My sister got diagnosed for suggestive MCTD and lupus as her kidneys were effected from lupus .Doctor ordered Ana panel and it revealed antibodies to u1 rnp strong positive.Now its been 4months she is on partial remission from kindey problem.But before this never my sister got into any kind of health related problems she had a small rash on hand which went away within a week and constipation problem. I am worried that will my sister get MCTD related symptoms in future or will she be normal again after kidney problem goes into complete remission.If she gets any symptoms ralated to MCTD what is that i have to do and can i ask my doctor to start away antibiotics therapy right away so that she doesnt get any future problems.Reply shall be appreciated

I was recently diagnosed with mctd, which I should have been 10 years ago. Does anyone else feel that they've had this since childhood? Any suggestions on how to manage or cope beyond medication?

This is a continuation from my post just a moment ago. I think I've been dealing with this since I was a toddler, possibly even longer, because I've read that babies that have colic oftentimes develop autoimmune disorders/diseases. I started experiencing weaknesses in my legs in 2006 at age 33. Finally 10 years later I get a diagnosis. I've always periodically taken Minocycline for other issues for the past 6 years, I pray that that's helped my symptoms to not be any worse than they are. I'm open to any suggestions to reduce symptoms and to extend my life.

Dear Happiseed,
I’m glad to hear that your sister is recovering from kidney problem. I’m not a doctor but I can share my personal experience with you. I wanted to get off the antibiotic but I keep getting little reminders that I must continue the medicine for the rest of my life. I’ve heard of others who may have gotten off the antibiotic forever but I wasn’t able to follow up with these people. Dr Sinnott wrote me a letter and told me that these days they have found that people need to stay on the antibiotics. You can call Dr John S Sinnott or visit him at

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 however he is semi-retired now.
From what I have studied the sooner you get on antibiotics and the less severe the disease is the easier it is for the doctors to treat. Your sister has serious disease if kidneys are affected. I hope your doctor will listen to you and keep her on antibiotics. You should learn all you can so that you can lead your doctor to the antibiotic treatment. I am in remission, I study Dr Thomas McPherson Brown’s book The Road Back and I participate in the Road Back organization’s share group on their web site. I would appreciate your feedback about how you and your sister are doing. Carol

How long did it take for the minocycline to start working?

To the guest of 19 hours ago,
The proof that the minocycline worked was that my ANA blood test result was High-1.640 in May of 2008, when they did the next ANA in June of 2009 it was down to normal -1.160. My first clue that I had a disease was in 2006. I thought I must have had a heart problem because I got crushing fatique but I went to the doctor and he didn't check to see if anything else was wrong with me. I started the minocycline in April of 2009. Within 5 weeks the swelling in my fingers had decreased and my legs didn't feel heavy anymore. I was doing so well that I couldn’t even tell that I had a disease. Even the arthritis, that was in my fingers seemed to be gone. To this day the arthritis in my fingers has been arrested. I say it's incredible! I hope this help you. Carol

Hi Portland RN,
What does HSCT stand for? I'm a retired RN. Hormone Stem Cell Transplant. Well yes! They have come up with alot of treatments for autoimmune diseases, most of them are damaging thier unsuspecting host. I'm so glad I went to the internet and found out about Dr Thomas McPherson Brown. My MCTD is in remission from taking minocycline (from the tetrracycline group of antibiotics). Go to the web sites of the road back and of the rhematic organizaion and read hundreds of testimonies of people who are in remission because of taking antibiotics, for all the autoimmune diseases including RA, Lupus, Scleoderma, Chronic Fatigue Syndrome, Crohn's Disease, Fibromyalgia, etc....I hope that I might be planting a seed that will grow. Carol

Hi,
I'm in remission. I study the road back web site and I follow Dr Thomas McPherson Brown and all of his patients who are in remission too. Carol, also I was a nurse.

You can also join the Road Back support group and read hundreds of testimoinies of people who are in remission by taking antibiotics of the tetracycline group as Dr Thomas McPherson Brown prescribed. Like me, Carol

PortlandRN,

Did Dr Burt treat your friend with MCTD? Would be very interested to hear.