Newly Diagnosed with Mixed Connective Tissue disease

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Lynny23
Regular Member


Date Joined Jul 2009
Total Posts : 49
   Posted 10/5/2009 6:42 AM (GMT -7)   
Hi Everyone,
I was hoping some people could hekp me understand a few things. I was diagnosed on friday with Mixed Connective tissue disease. I do not know alot about this disease and trying to explain things to people in becoming a nightmare- they don't understand at all and think I'm making it up.
I have been put on arcoxin for the inflammation and nifedipine for my raynauds. I also got a cotasone injection on fri to help with the inflammation and it seems to be working a good bit which is a relief.  Is this standard medication for this disease?
I also don't know what to expect from this as up until now my symptoms got worse very quickly. Please help me understand so I can explain to others as well. I feel very alone and confused.
 
 

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/5/2009 8:09 AM (GMT -7)   
Hi Lynny, I also have MCTD. Just as there are many types of Lupus there are differant
variables to MCTD. Scleroderma is dominant in my overlap. A skin biopsy confirmed a
variant of scleroderma. I do get burning rashes on my chest and neck. I also have Raynauds.

My initial symptoms were somewhat classic. I had the swollen fingers, joints in both my
hands and feet were swollen. I had rashes, overwhelming fatigue, changes in my skin.
Bloodwork was comimg up positve to the antibody RNP. Initially my rheumy diagnosed me
with UCTD. After a year he was convinced it was MCTD. MCTD is the only CTD that can be
confirmed with only one antibody, RNP.
 
MCTD is an overlap of three connective tissue diseases, typically SLE, scleroderma and
polymyositis. In my case Scleroderma, Lupus and RA. This disease is an autoimmune disease, meaning the body makes antibodies against its own cells. Every case is
differant and the treatments vary depending on what your symptoms are.

In the past I was on plaquenil and Imuran. I was also in a prednisone taper for a short
while. Now I am taking Methotrexate, which is an immunosupressant. I also take
Diltiazem for Raynauds.


I try to exercise daily and eat healthy. A positive attitude helps me cope and I do have
a loving supportive husband, family and friends.

I am sorry you recieved this diagnosis. I know I was scared when I was first diagnosed.
My MCTD was confirmed this summer. It took almost a year and half to get the Dx.

I'm happy and still enjoy life! Wishing you the best!!!
 
Hugs
 
Robin


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

Post Edited (crazykitty) : 10/5/2009 10:26:02 AM (GMT-6)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 10/6/2009 10:04 AM (GMT -7)   
Lynn,
 
I have MCTD and had an extreme case.  Patients vary from almost no symptoms to life threatening and can have symptoms of any or all of the diseases.  Normal treatment is prednisone (cortisone is a local treatment typically used for arthritis and other joint problems and injuries) which suppresses the immune system and reduces inflammation throughout your body.  Docs will usually put you on another prednisone sparing med (like imuran or methorexate, etc)  to suppress your immune system and then slowly taper you off prednisone.  Resistant cases like mine can be a challenge to find an effective treatment and often require IVIG, rituxan or other treatments.
 
What kind of a doctor are you seeing?  Is he/she familiar with AI diseases?  MCTD is very rare.
 
Here are some sites with lots of info.
 
 
 
 
 
Ask all the questions you want.  It is a confusing disease but I am an example of someone who almost didn't make it, was completely crippled (lost 40 lbs of muscle in 1 week) , had kidney, liver and GI tract problems, joints and extreme muscle involvment, and could not swallow anything.  That was 4 years ago and I have made a remarkable recovery...no relapses and I have returned to an active life of skiing, hiking, golf and best of all, I can eat and drink anything.  4 months with a feeding tube was not fun.
 
Hang in there but I would recommend getting a second opinion from a rheumy who is experienced treating AI diseases.  Treatment is always to suppress the immune system in some way and then deal with pain and secondary conditions as they develop.
 
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.

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