Posted 4/26/2008 1:55 PM (GMT -6)
I have mctd and had a very extreme case. Most cases are more progressive and milder than mine but every case is different and presents a different set of symptoms and severity.
My case started just like yours with what seemed to be a gout attack. Withing 2 days it had spread to both big toes, feet, and ankles. Gout is typically not symmetrical and it was obvious that I had something else. I had a tenative diagnosis of lupus 2 months before by a hematologist (my platelets had dropped and I had mild anemia) and that was confirmed a month after the first flare. The swelling, redness and pain spread to my legs and then shoulders and arms. All of my joints seemed to be under attack at the same time. 2 short treatments of prednisone only temporarily alleviated things.
After 3 months and continuing deterioration (swelling, weakness, pain, fatigue) my doctors admitted me to the hospital for more tests. MCTD was diagnosed at that time and I was treated with 60mg of prednisone. My condition stabilized but did not get worse for another 2 months. I was exhibiting symptoms of lupus and polymyositis but did not seem to have any of scleroderma, the third disease in mctd. Then PM hit me like a freight train and I lost 40 lbs of muscle in a week. It left me totally crippled, a quadriplegic, and I could not swallow. My case was resistant to prednisone and it took ivig to save my life. Other meds are too slow acting and my liver was being overwhelmed by the muscle breakdown. I was near death but the ivig treatments worked although the damage to my body was extensive. My docs kept me on pred and also put me on imuran at that time. MCTD hit my muscles, kidneys (proteinuria), liver (auto immune induced hepatitis), joints, and entire GI tract.
In Jan 2006 I entered a rehab hospital and spent several months as an in and out patient. AFter 5 weeks I was able to walk and go home but I was very weak and it took 3 months of speech therapy before I got my feeding tube pulled. I have continued to work out on my own the past 2 years and have returned to golf, tai chi, skiing, and other things. Not sure if I will ever be 100% again but life is good again and I can enjoy many of the activities I did before with some restrictions.
I know that my story will probably upset you but it is unique both in the severity and the recovery I have made. Aggressive treatment is important and if you feel yourself getting weaker or having difficulty getting in and out of chairs or going up stairs do not ignore those symptoms. Until you get it under control you should have blood tests including CPK and SED (ESR) every 2 months or so to monitor your condition.
What dose of pred are you taking? Are you taking any other controlling meds like imuran or methotrexate? Typically, experienced docs put patients on something like that so that prednisone can be tapered over time...sometimes, a year even several years. Immuno suppressants like those are usually better tolerated for long term use than pred although some patients require more than one med to control their immune system. Every patient responds differently to treatment so each of us is a medical experiment. It is important to find a doctor who has experience treating lupus, myositis, and other connective tissue diseases. Most doctors don't have a clue including many rheumatologists. The disease is just too rare.
Let me know if you have more questions. MCTD is very rare and very complicated and is different in each case. Don't assume you will have anything like what I have experienced but it is a possiblity. Since getting things under control I have not had a single flare and my challenges have been to recover from the damage done mainly by polymyositis. There is much more to my story but it would take hours to tell so I have only hit the highlights....or low lights.
Hang in there and if you are not satisfied get a second opinion. Teaching hospitals are best that have good rheumatology departments. Not sure where you live but Northwestern U, Mayos, Johns Hopkins (they have a myositis clinic), Cleveland clinic are some of the good ones. There are several in the west and on the west coast as well.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller