Hi, Robin, and welcome to this forum of nice people. I hope you will be uplifted here. Let me encourage you to make an appointment at Johns Hopkins or any of the large teaching hospitals with myositis centers. They can do amazing things at these centers, and often do many things in one or two days. Also they often are able to work with your local doctor, who may not be very familiar with treating myositis. Do keep us informed of your progress, and best wishes to you.

Greets Robin

When I was first put in the hospital with my problems I was immediately put on IV high dose prednisone. I don't remember the dosage, but it was well over 1000mg. It took more than a couple weeks for me to stabilize. Stability in this case was my CPK/CK levels lowering to safer levels. The doctors waited for that stabilization before they did a muscle biopsy from my shoulder. And based on that biopsy they confirmed the initial diagnosis of DM.

I have read that prednisone can hide some indicators, but at that time my docs didn't seem concerned and used the biopsy results. At this time, we cannot find the DM antibodies in my blood and, I guess, assume it is the prednisone that is hiding it.

So, it seems to me it depends on the docs disposition whether prednisone effects are significant, which isn't as scientific as one would expect IMHO. So part of getting a reliable diagnosis is finding the right doc, which doesn't seem right to me either. If John Hopkins is an option do it. The more expert opinion you can get on your condition the better. This is a RARE and alot of people in the medical arena have never heard of it or never seen it.

Hi Robin. I am sorry to read your post. I don't believe your docto has enough experience with this illness, sometimes it takes an experienced doctor with good clinical knowledge of this disease to set you on the road to recovery. Going on this way means you will not get better and things like swallowing could get worse. Please decide to get yourself to JH as soon as you can. Look over on the TMA Myositis site, tell people where you live and they may come back to you with an experienced Rheumatologist near or where you live. I hope you find the right doctor soon and please let us know how you get on. Best wishes. Autumm

I can't explain how much better I feel from your replies, although I suspect you know. I have been struggling with making the jump to Johns Hopkins and now I know it's the right thing to try. Thank you and wishing you all happy holidays. Will keep you posted and be keeping up with you all as well. Oh, I live in Melbourne FL. Very close to Mayo Clinic in Jacksonville - Johns Hopkins seems a better choice as they have the dedicated department, but would love to hear of any opinions between the 2 ....

Hi Robin. So glad you feel a bit better with some support. I know I did at the start of all this. I live in London so am not able to help you with doctors in America. I know Dr Dana Ascherman who works in Florida is a Specialist in DM/PM. He is I believe a member of the American Myositis Board (TMA) he may be a good place to start. Best wishes. Autumm

Thank you, Autumn. I have looked him up and even requested an appointment :)
My rheumatologist is sending me to a dermatologist for a skin biopsy ...

Well done Robin. You have taken the first step. All I read about him is very good. Do let us know how it goes. Autumm

I wanted to jump in because I've been going to Johns Hopkins in 2015 to fine tune my diagnosis. I've had to pay out of pocket as my insurance doesn't cover out of state so it has been a huge expense but I've been able to get the answers I needed. I thought I had PM but I have IBM with some weird "PM like" involvement. She knows of one other woman with my symptoms and doesn't have answers but she knew more than my local doctor.

If you decide to go to JH, know what you want out of it. Also know that they will want many tests to have been done. For me, I needed to have a muscle biopsy, MRI, CT Scan, and a Myositis Panel (blood work). They wanted the past clinical notes and any test results I've had. I sent them over 80 pages of information before they would consider giving me an appointment. I don't mean to discourage you and perhaps your experience will be easier but I wanted to share. It has been a great experience for me.

I was also on Prednisone while going through diagnosis. I couldn't wait and I couldn't go off. I was on 60 mg at the time. I was on it for almost 5 years before I was able to get off but not everyone can get off. It took me a few years to get down from 10 mg to off. So be patient and if it helps, don't be too anxious to jump off. Our bodies naturally create about 7-10 mg so taking 10 mg isn't too bad since it is the rate your body makes anyway (Your body stops making when on Prednisone long term). I was on an every other day dose that helped me get off. You might want to talk to your doctor about that. Seems everyone has a different approach to get lower. I was on 2.5 mg every other day for about 6 months. That was a good dose for me but I wanted to try to get off and we did.

Hang in there. Diagnosis is tough. If you have easy access to Mayo Clinic or Dr. Ascherman, maybe check those out first. I've met Dr. Ascherman at the TMA conferences. Very knowledgeable and friendly.

anybody have an idea on Duke Medical in dealing with DM?

Hi Steve. I live in London so I know nothing about Healthcare in the USA. Autumm