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LonerAnn
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/10/2009 8:31 PM (GMT -7)   
Hi Everyone,
I am new and looking for a support group to cope w/ my recent Dx w/ MCTD. I feel so lost right now even though my MD tries to help and explain this form of illness. I was diagnosed in 2008 and am on Plaquenil since then. I only been given 200mg/day. And since then w/ every check up, my blood work/results improved. I feel so much awake than I normally did before the Dx. Yeah, sometimes my body would ache but I believe that too much stress is the major cause for it. I just wanted to hear some inspirational stories from others who is also dx w/ this type of disease. MCTD is so hard to really find and understand. If anyone can give me a quick crash course in it, it'll greatly be appreciated. Thank you very much:)

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/11/2009 6:17 AM (GMT -7)   
Ann,
 
I have MCTD and had an extreme, life threatening and resistant case.  Like all AI diseases MCTD is difficult to understand at first.  By definition MCTD is lupus, scleroderma and polymyositis.  A patient can have symptoms of any or all of the diseases and range from almost unnoticeable to life threatening.  Treatment is usually prednisone but sounds like your case is mild and you are trying plaquinel (more commonly used with lupus only patients) first.  Those that start with prednisone usually get a pred sparing med like imuran or methotrexate and then start a slow taper of pred.  Resistant cases need more...ivig, rituxan, or a combination of meds to get them under control.
 
What specific questions do you have?
 
Below are some links that might help you.
 
 
 
 
My case was diagnosed in 2005 but has been under control since jan 2006 and I have had no flares which is typical of extreme cases.  Lots of other problems as a result of the disease and meds but life is good again.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/11/2009 6:20 AM (GMT -7)   
Ann,
 
Where do you live?  You can find lupus and myositis support groups and might find other patients with mctd.  The lupus groups I participate in has 3 mctd patients (2 mild and then my case) but I am the only one in the myositis group.
 
 
www.myositis.org    (support groups are called KIT groups)
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/11/2009 7:54 AM (GMT -7)   
Hi Ann, Welcome to the forum!

I am an optimist and always try to look at the positive side of things. I too have MCTD,
was initionally dx with UCTD but recently recieved a confirmed dx of MCTD. Scleroderma
is my dominant disease in the overlap. I do get Lupus rashes but not the malar rash on
my cheeks. I get the annular ring type on my chest when I am flaring.

Excercise and relaxation therapy really helps me. I love to walk, it relieves stress, and
gives me energy. I am very careful to listen to what my body is telling me. I rest when
I need to. Fatigue is a major issue for me, I'm careful to really watch what I do during
the day. I learned what my limits are when I am flaring. When I have muscle pain, I
soak in a hot bath. I try to reduce stress as much as possible, when I am tense; I do
deep breathing excercises. I try to eat healthy and get enough rest.
 
I continue to enjoy life. I am lucky to have the support a loving husband, family and friends.
Parties are a big thing in our neighborhood. We celebrate life! Learning to accept my
illness was not easy at first because I was afraid. I realized that I am not my ilness, I am
still me, and I take it one day at a time. No two ilnesses are the same, you will find what
works for you.

Ann, I am really glad you found us. No one is alone here!!!!!!!
Continue to post, comment, vent or ask questions. There is always someone here.

Robin turn
 
 MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia
 MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 
  
 
 
 
 
 
 
 
 
 
 
 
 
 

Post Edited (crazykitty) : 9/11/2009 12:29:55 PM (GMT-6)

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