Those all sound like reasonable next steps to me, an advice nurse and DM patient. need to check out the heart, and if you are not responding well to steroids you need another sparing med. Consulting with a Rheumatologist is standard and you should be seeing one regularly i think. Finding one well versed in Myositis is not easy but worth the effort.

Not at all sure why you would gain weight as you taper the prednisone, most of us gain when on high doses. Then loose it when we taper.

Sending you all the best, Shawna

Hi Sonia. I did have a cardiac echo and ECG as part of the Myositis work up at diagnosis. Your GP may be right that you are tapering fairly quickly and Shawna maybe right in you needing a sparing drug. I did not put on weight until I felt better on the Meds. Sorry to read this. Don't get down. It does take time to get the Meds right. When do you next see your Rheumatologist. Can the appointment be brought forward. Please let us know how it all goes. Autumm

My reaction to this is to find another doctor. When a physician won't hear you out, then it's not a good relationship. YOU know your body better than anyone else and she SHOULD listen and evaluate everything you say.

I have learned that just because doctors "tell" you they want you do have certain tests, take certain medications -- it's all up to YOU. You don't have to do any of what they say....I have turned down a number of tests.

My family physician whom I trust and who truly listens and cares told me straight up that certain tests are not necessary, just the standard protocol that physicians do for their own paperwork. Now THAT is a good doctor - to inform me and give me the confidence to say no.

Lpey. May I suggest that we on this site are not medically qualified. It is a doctors duty to care for their patient, we don't always understand and we are sometimes anxious but withMyositis there are many things which need to be checked out. There is an international protocol which all good Rheumatologists will follow. Most family doctors will have the welfare of their patient first. It is not for us to advise against this. I am glad you remain well having refused tests and I wish you all the best. Autum

Sonia, I, too, was sent to a heart doctor for several tests because I had been having heart quivers and palpitations. Remember, the heart is a muscle, and myositis attacks muscles. It's best to get things checked out.

As for not gaining weight, everyone is different. I put weight on, but my dad and aunt did not--and we were all on long-term prednisone. Regarding the walking, I still don't walk like I did before PM, but I'm sure it's because of the muscle damage that had been done. However, I'm 80% improved over where I had been. Don't let your doctor's comments discourage you. If your doctor isn't listening to you, then you can either ignore her manner or find a doctor with whom you are more comfortable. Myositis is a journey, sometimes a long one. Best wishes to you for quicker improvement.

Hi Sonia. Do not worry about the heart scans. Scans are simple tests that give good information. You could google cardiac perfusion scan and see what to expect.

I have secondary pulmonary hypertension. I have regurgitating heart valves. I am not on any meds yet. It is very common to have heart valve and heart conduction issues with DM.

A good cardiologist will not put you on any meds unless it is absolutely necessary. You can always get a second opinion, but be prepared that the second opinion may agree with the first doctor.

In working with a doctor, I always have my list of questions. I get to the point. I do not leave until my questions are answered and I am comfortable. Remember that the doctor works for you! I will call my doctor if I have a medication problem and she always returns my calls.

Be sure to ask the doctor what it is about your blood tests that makes her think the prednisone is not working. It takes some people several months at a high dose before they respond.

Good luck and keep us posted.

More appts and did not turn computer on till now (quite late). Plus 13 yr old twins staying with me tonite. Daughter out of town. I don't mind at all, THEY take excellent care of nanna......
Thankyou for your advice and I will be having both tests done Shawna. Better safe than sorry and as you say Nanny, the heart is a muscle.
I am not due to see the rheumy till July 10th, Autumm unless my family doc. makes a big fuss and I get called in earlier. I will certainly mention to the rheumy when I see him that I believe the taper is too fast (5mgs every week). In fact, I took it upon myself to extend to 10 days and will see if it makes any difference. Maybe it will give my body time to adjust. I believe I am responding very well to the steroid other than the fast taper. It is certainly keeping my inflammation in check and I am a little more mobile now. Most of my mobility issues are due to damaged erector muscles in the back. Hopefully with physio I will regain a goodly portion.
Trypt I did google cardiac perfusion and that's what scared the pants off me.... radiation/and as I am unable to handle the treadmill they inject a med that makes your body react the way it would to physical exercise. Comes with headaches/nausea etc, etc., (Such a coward aren't I)........
I usually have an excellent relationship with my family doctor Lpey. I have been with her for many years. That she is not too familiar with this disease is understandable, it is rare, but I do know she cares and wants the best for me.
Thankyou dear friends for all the input. You always make me feel better. Will post again when I have any news.
Stay well, Sonia

Hi Sonia. You are sounding a little better. All the tests we have are a difficult time but you will get through it all and come out the other side. It's just a great shame for us all that its not like taking asprin for a headache but a longer more involved process. Your Grandchildren sound so lovely. Spent yesterday with my Grandson. You are in my thoughts Sonia. All the very best. Autumm

Sonia
I also had my heart and every other organ and every opening checked out with the diagnosis of DM. So its good to have your heart checked especially if your ECG was changed.
I also only put weight on when I started to taper off the prednisone I got the cheeks and weight gain when I went from 10mg to 9 and so on. I am working at not gaining weight as I go further down. Just started 7mg this week. I put on 45lbs! but needed at least 35 of those cause I lost so much when I was inflammed.
So good luck with the tests and keep your chin up. We will get through this!
Remember if you have questions for the doctors write them down and have someone with you when you go see them, a second set of ears is so good. When we hear some things sometimes we don't hear exactly what they are saying. I take my ipad with me and take notes and ask questions

take care
Roxanna

I bought a digital voice recorder to take with me to my appts because we talk about so many different things I don't remember all that was said. Even though I get an end of visit summary there are things that I miss. (Brain fog) I don't know if it is legal or not but it sure did help when I listened back to it. Just a suggestion.