Hi there - I'm glad you are getting the care you need and it sounds like you have a good doctor - thorough. I hear the earlier the treatment the better the diagnosis. I have a different scenerio in that I have PM with interstional lung disease. They wanted to put me on 60 mg pred at first and I couldn't take it well (stayed awake, etc.) and did 40mg. Sounds like you are handling the pred/imuran well - which is great. My doctor consulted with another, and they thought adding a second drug (Imuran) was better earlier on than waiting. I was on Imuran and I liked it but then I got allergic to it - make sure you get blood work to see how your liver levels are, etc. Results are different with everybody. I would just stay close to your doctor and have great communication. This is a great site with great people. Let us know how the biopsy goes.

Don't worry about the muscle biopsy - I personally put it off for a year as i was scared! not a good decision. in the end it was no big deal even though i had to have a blood transfusion before hand,(due to a known blood condition) it was all good and got a definative diagnosis.
I think you have gotten your disease early which will be a benefit. I have Sjogren's Syndrome, Polymyositis, RA and Hashimotos thyroid but no one mentions MCTD to me they just treat the symptoms. I am on pain killers and Imuran 75 ( only 3 months now) Good Luck

Welcome to the group, Cadolph. There are many great people at this website, who are willing to encourage you and share their knowledge and experiences.

It is good that you were diagnosed quickly, so hopefully the doc can keep your PM in check. Of course, everyone's response to this disease is different, so everyone's treatment is individually based. But it sounds like you have a doctor who is knowledgeable.

As for living a fairly normal life, that is definitely possible. Much depends upon your response to the medication prescribed. But there are several options; so if one med doesn't work, your doctor will give you another.

Best wishes to you. And, again, welcome to the group.

Hi! I'm fairly new to all this as well. For now I have been diagnosed with dermatomyositis in addition to mixed connective tissue disorder. From what I have read, it sounds like, when in conjunction with MCTD, the effects of myositis are not as severe as myositis were the only condition present. I also read somewhere that patients with the combination of both conditions respond more quickly to medications and at lower doses. I can't recall right now where I read that, but it sounds good to me!! On the other hand, we don't know which aspects of MCTD our bodies will decide to have. I have one friend whose has severe pulmonary hypertension as a result of her MCTD. My PA has MCTD and only has to take meds when she flares up every couple of years or so.

I've been dealing with this since October. The rashes associated with dermatomyositis were my main presenting symptoms. My hands also swelled to the extent that I could neither bend nor straighten them. Not good for an ultrasound tech!! The muscle weakness showed up in December. I have been on prednisone and plaquenil since December and all of my symptoms are much more under control. I started feeling noticably better after being on pred for about 8 wks and plaquenil for about 6 wks. I am down to 40 mg of pred a day (down from 60 mg) and am hoping to continue tapering as fast as my body will allow. After I drop my dose I have noticed increased muscle weakness and that my rashes flare up. The muscle weakness is bothersome, but doesn't keep me from getting things done. It just takes longer to do things and I wear out a little more quickly. I am back at work (now that I can hold my ultrasound probe) and am trying to figure out what my new "normal" is going to be. I'm trying to stay positive and not focus too much on the scary stuff.

I never had the muscle biopsy because I had already been on prednisone for over 6 weeks when I started seeing my new rhematologist. I did have the EMG, though. It wasn't bad at all.

Here's a link to one of the articles I was thinking about.

http://neuromuscular.wustl.edu/antibody/infmyop.htm

It's long! The part about MCTD is about a quarter of the way down. You'll notice a sketch of a hand on the right hand side of the screen when you're in the right spot. Good luck with everything! Let us know how it goes!

hey welcome to the group! i would think being on prednisone at 50mg that would kick off feeling better much sooner. i'm on imuran for dermatomyositis and it takes about 16-18 weeks to start seeing results from that drug. i'm so happy for you that you got a diagnosis early so you can start treatment right away!

Thanks everyone for your positive comments and stories. I'm so glad I found this site!

I'm headed out this morning for the muscle biopsy.

I hardly have any appetite, I was hoping prednisone would increase this - is this a sympton of the disease?

I'm also wondering if I'm on 50 mg prednisone and 100 mg Imuran since Feb. 15th and my thighs do start to feel fatigued about 3pm. I know they will do bloodwork after a month and determine if dosage is working? Overall, I do feel a heck of a lot better with the inflamation and energy. I'm hoping I don't have to have an increase.

Hi there - let us know how your muscle biopsy goes. I did not have a decrease in appetite with PM. The meds take awhile to take affect they should be kicking in soon. I was on 150mg Imuran at first. They will do bloodwork every month to see how your levels are. When they change a med, they check the blood in 2 weeks. They upped by Cellcept two weeks ago and I go in tomorrow to see if it is agreeing with my system. It will take some tweaking on the meds, but hang in there and talk to the doc! :-)

I had no apetite whatsoever when I first started feeling bad. I don't know if it was because I was just too tired to realize that I hadn't eaten or if I was just hurting too badly to care. Once I started feeling better my appetite really kicked in. I feel like I just graze like a cow all day long now . . . and I've got the 20 extra pounds to show for it (and 10 of it is probably in my face)!!

I have PM and MCTD. I am currently on prednisone (down to 15 mg a day - and I can feel the pain coming back) I am on plaquenil now again for a month 400 mg a day and will start on injections of methotrexate. I tried the tablet form before but it really upset my stomach, have heard better results about the injections. I can relate to the unuseable hands, that was me in October. I tried the Imuran but after a month I developed meningitis....the rheumy told me today she had spoke to someone at the John Hopkins Polymyositis clinic and they had a discussion about reactions to the Imuran so just watch yourself carefully. The rheumy has agreed that full time work is not possible any more so after my sick leave is done I will go on 1/2 time work and 1/2 time disbility. But really, I will never be what I was but the new me isn't so bad. We are getting used to each other. Some days are good, some are bad. You learn to do everything depending on how you are feeling, sometimes more than you are up to but you know we just want to be normal again. My big concern right now is my damn hair is falling out.....plaquenil???? prednisone???? stress (waiting for surgery for my 25 year old son - thyroid cancer)and my hair falling out is just the icing on the bloody cake....any suggestions as to what is causing it or how to stop it....damn I DON'T WANT TO BE BALD!

Oh Lela2, I am dealing with all the hair loss as well. My specialist said it is from Methotrexate..he is reducing my injections to 20mg a week rather than 25 and adding Cellcept with hopes to cut out the Metho in time (and the Prednisone...STILL on 10mg a day)
I have bald spots and soooo thin hair now. I am taking 5mg of Folic Acid a day now rather than 3 and I've also added 5000mg of Biotin to my mix of meds.

Loss of appetite can be a symptom of PM. By the time I was diagnosed, I had lost 12-14 lbs. because of my diminished appetite and the neurologist told me that was common with PM. However, after the Prednisone kicked in, my appetite turned around (a little too much). I did gain my lost weight back, and then some.

@Lela2--I don't know if the Prednisone causes hair loss, but I'm sure it's possible. Prednisone made my hair really soft and limp at first, and then dry and brittle. My beautician said all medication comes out in the hair and skin.

Oh how I love my hair, please don't fall out anymore....my husband says he will still love me even if I lose my hair :)

Cadolph, I really hope I didn't discourage you with the Imuran story. It is rare to have a reaction and when the drug works the way it should it can be life changing for you. So please hang in there.

I agree with the others about the lack of appetite. I had to make myself eating when my symptoms started and I lost about 10 lbs in a month. I'm currently on 60mg of prednisone and my appetite has picked up a lot. Luckily, I have been able to maintain my weight so far, but I've heard that some people lose of pred first and then start gaining. I certainly hope not, as i have enough side effects to deal with, without blowing up like a balloon.

I hope your biospy went well. I had one and it was that bad.

Thanks everyone for your support. Muscle Biopsy was not bad. I'll know in about 2 - 3 weeks what the results are.

I sure hope I don't have any hair loss, I already have pretty fine hair. It's the weight that I'm more concerned with. I have lost about 15 pounds and am not at 117 at 5 feet 5.

Has anyone every heard of facial numbing related to Mixed Connective Tissue Disease? My right side of my chin, tongue and part my face is numb. I'm seeing a neurologist in June.