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Bsime---Can you help explain McTd?

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Posted 5/11/2007 12:59 AM (GMT 0)
Hi Bill... I've seen your posts several times stating that MCTD is SLE/PM/&Scleroderma. I'm confused because sometimes my doctor uses the term lupus sometimes uses the term MCTD. On my medical record it says MCTD when he transcribes it and SLE when my primary care doc transcribes it. I only have arthritis and polymyositis. NO scleroderma or the antibodies that go with it. Does this mean I'll get it later? I also DO NOT have raynauds. I get so confused, I have an appt with my rheumy at the end of the month and I am going to ask for a CLEAR explanation but I have a feeling you will do a better job. One last question for you, how do you like the Imuran? I've noticed the other people here with polymyositis are on Imuran. My treatment is 5mgs and tapering of pred and methotrexate injections... I've really come a long way from 2 1/2 years ago with one small relaps (while prednisone free) but sometimes I wonder about my doctor's choice of meds. Thanks...
Posted 5/11/2007 1:30 PM (GMT 0)
Lu, I am bumping this back up for you so it doesn't get lost and hopefully Bill will see it. I'm glad you are going to ask for a clearer explaination of your diagnosis.
Posted 5/11/2007 9:00 PM (GMT 0)
Lu,

I'm sure Bill will be along. In the meantime I'll give my notion of what is going on. An autoimmune disease is when our immune system does not recognize our body as ourself and our immune system attacks our own body. It does this in different ways (and the reason is not know). Since there is no current explanation for "why" this is happening, the medical community has autoimmune disease characterized by "what" is happening. In 1972, MCTD was first described as a patient having symptoms from each of systemic lupus erythematosus, scleroderma, and polymyositis. I've described it as "my body can't decide which disease to have to it is trying to have all three at one time". There are also lab tests (high positive speckled ANA and others) that point to MCTD. I love my Imuran. I started last Sept and now have much more energy and less muscle weakness with no noticeable side effects.


I look forward to hearing from Bill.

Hope this is helpful.

Stay Strong,
Sue
Posted 5/12/2007 3:32 AM (GMT 0)
Lu,

MCTD is the disease with 10000 faces.  By definition it is sle, scleroderma and PM but each case manifests itself differently.  I had lupus symptoms first and then PM.  It is still debatable if I have any scleroderma symptoms.  If I do they are internal....my esophagus, stomach, and intestines. 

There is no certainty that anyone with mctd will have symptoms of all 3 or if the disease will morph into one or the other exclusively.  PM was the worst for me and almost killed me.  However, since it has been controlled (since jan 2006) I have not had any flares and no additional symptoms. 

In my case I lost 40 lbs of muscle and was left a quadriplegic.  My case was very unusual and very extreme.  I have recovered a lot of strength and am completely independent now and look normal.  My stength is only about 65% of normal despite 16 months of physical therapy.  I work out 4-5 times a week on my own.

I developed raynauds but it seems to be a little better now.  Not everyone develops that but it is quite common with mctd or lupus.  It can be debilitating but if treated it is just a nuisance.  I am a winter adventurer and went snowshoeing in -10F weather this winter and was OK.  I definitely have to dress warmer but raynauds is no big deal for most.  If it progresses there are meds to alleviate it.

Imuran seems to be working for me.  I am down to 8mg of prednisone and tapering at 1mg per month.  My doctors considered methotrexate but I am not sure why they decided on imuran as my long term med.  Seems like most people do well on it and tolerate it indefinitely.  If you have a problem with imuran I understand it is immediately.  There were 3 rheumys who collaborated in my early treatment and saved my life.

My PM was prednisone resistant and gamma globulin saved my life but I have not had it since dec 2005.  The plan is that imuran will be my long term med and hope to reduce it in the distant future.  Things are going well so my doctors are being very conservative which is OK with me.

Let me know if you have more questions and feel free to send me a private message if you want.

Hope you feel better and can get some answers.  There are very few doctors who know what they are doing with mctd or any myositis or overlapping tissue diseases. 

Bill

 

Posted 5/13/2007 12:13 AM (GMT 0)
Thanks for all your help.. I'm understanding a lot more, I'll try to remember to let you know what my doc say. But you helped A LOT... I'm sure I'll have more questions for you in the future. Stay well!!
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