mctd

I am a 54 year old woman just diagnosed with mixed connective tissue disease and I'm scared to death and feel so alone.

Good advice from Joy and completely agree. I was just diagnosed in January with MCTD, it took a few months for the meds to kick in but I am finding my "new normal". I have had to make compromises (used to be a distance runner and have had to stop running for now)- but I still lead an active lifestyle. I work full time and spent the last few days on vacation hiking mountains. I do have to listen to my body and rest more as well as watch out for the sun.

I felt the same way when I was first diagnosed too and reading the posts has been great therapy for me to see others dealing with the same problems and struggles that I have found myself facing.

Take care of yourself and find a good rheum who will work with you.

Amber

I am currently on Plaquenil (anti malarial). I got placed on the brand name drug because the generic gave me a skin rash. I had an upset stomach at first but that went away after a week or two. I get an eye exam every 6 months to ensure the drug is not causing any issues. It has been a life saver for me, I had terrible muscle aches and skin rashes before taking Plaquenil. I also have dry eyes and am on restasis and a fish oil supplement as well. Some people do take steroids, but depending on what you need to be treated for you may or may not need them.

I can sympathize, I had the aches in my feet as well. Stress does seem to make symptoms much worse. Even medication controlled, stress will take me out a day or two. Once they get you on a treatment, you will start feeling better. The plaquenil took some time for me. I started feeling some relief in a couple of weeks, the symptoms were there but more manageable. It took a good 4-6 months to feel like myself again. I hope you don't have too long to wait to get in to the rheum. Until then, take care of yourself and rest when you need it. If you are a researcher, don't scare yourself on the Internet....I completely freaked myself out by the time my PCP gave me my ANA results to the time I got in to see the rheum. I made myself so sick from stress I ended up having to miss a week o work due to a major flare.

KK,

I have had mctd since 2005 and had an extreme case which did not respond to steroids. IVIG tamed my immune system and I took prednisone and imuran for many years after that. Today, I am off all controlling meds.

There are many other possible treatments for mctd but prednisone is usually the first that is tried because it usually works, is fast acting and inexpensive. Docs will put you on some other prednisone sparing drug like imuran or methotrexate. Several others have already been mentioned and there are others. Any of these treatments have potential side effects but the operative word is "potential." Not everyone has terrible side effects with a given drug but some do. The most important things to focus on is not to worry about side effects which might not happen but to get your disease diagnosed and under control as quickly as possible. The sooner you can control your immune system the better the outcome you can expect. If a given treatment causes serious side effects then you can stop it and shift to another treatment or combination of treatments.

Mctd is a disease with endless variation in presentation, severity, response to treatment so no one, not even your doctors can tell you anything with accuracy. Most of the people on this forum with mctd have mild cases compared to the potential of the disease. Also, some with mctd have different diseases than the tradtional description of sle lupus, scleroderma and polymyositis.

Bill