New and Scared

Hi guys,

After so many years of discomfort, I was diagnosed with MCTD (after Fibro several years ago).   Both are often seen as the "catch-all" but we all know that's not the case, especially since MCTD shows in the blood.  AH...PROOF....right?   Sad but true.

So the disease and its symptoms are depressing me.   I finally decided to try the Plaquinil.    I went through the initial stages of stomach stuff, and then was ok...that is until a few weeks later when the worst heartburn struck.   Nothing relieved it.   My Rheumy said "Stop the Plaquinil today".   And so I did...about 2 weeks ago.  Heartburn almost immediately gone...and crappy MCTD symptoms back.    I do NOT want to go on anything stronger.   I cannot tolerate the heartburn pain (and yes, I'm already on rx. meds for that).

I'm so scared that I am going to be stuck in the horrible ups and downs of MCTD without relief...without the ability to solidly make any plans.

Please offer me hope.   Please offer me suggestions.  Please share your stories with me.

Thank you so much,

Nancy

Usually the next option to try would be Imuran or Cellcept. After I could not tolerate Plaquenil, we moved to Imuran and it did not give me any symptoms. I am actually back on Imuran at 150mg with no symptoms. Maybe you could try a low dose to start with and see what you think. Remember, with Imuran, a lot of the side effects you will read about are generally seen in transplant patients who recieve a much higher dose than lupus patients. The only issue with Imuran is it can take up to 3 months for some relief, so you probably should start it soon to get it into your system quicker.

The main issue is Imuran CAN lower your immune system making you prone to develop more colds, virus, and things along those lines. Most people tolerate it extremly well and with as long as you wash your hands often, avoid people in the sick crowds, etc, you should be fine!!!

Hi Nancy, I'm a poster on the fibro forum but I also have MCTD.

I have found that taking one day at a time really helps. Do what you can to keep your stress level down...exercising, taking time to do deep breathing and meditation helps me. Fill your day doing things you love to help distract pain. You can take some control and still enjoy life.

We are all differant when it comes to meds...initially I was on plaquenil, then on Imuran and now take methotrexate. Have been on the MTX for several years now.

Not all of us that have MCTD have all the same exact symptoms. I was diagnosed because my bloodwork was showing high levels of RNP, my fingers were swollen like sausages, had lesions and rashes that would come and go, joint pain, swelling, myositis, Raynauds, A dent in my forearm was biopsied and was shown to be scleroderma.

There are mild cases of MCTD and some that are more severe. I now have heart disease and pulmonary hypertension but still lead an active life.

Worry is something you should never waste your energy on. Either we have control over a sitituation ore we don't...if you don't let it go.

I've found life to be easier when my focus is on my blessings and having fun. Don't let some crummy autoimmune disease rule your life. Life can still be great. :) Wishing you the best!!!

Hugs, Robin

Nancy, thanks for your kind words. I have learned so much from others here at Healing Well.

I find that trying to think positive serves me well :) Everyone has "stuff" to deal with. Allowing myself to believe that things will be ok really helps.

Getting my blood pressure under control was the first step of treating my heart disease. I'm on a calcium channel blocker, Diltiazem ands a beta blocker, Bystolic. I had extensive heart testing and was found to have concentric left hypertrophy...meaning my left ventricle has become thickened and stiff, also have diastolic dysfunction...this combination can cause pulmonary hypertension....mine is considered mild.

My rheumy was the one who referred me to a cardiologist and a pulmonologist. I have an Echo cardiogram done every six months and have chest x-rays and lung function tests done every six month too. So far, I'm not on any oxygen. I'm a walker, it's great exercise and relieves stress.

Remember...one day at a time and focus on the fun things in life :)

hugs, Robin