Hi Buttercup. I am sorry to read your post and do so hope you get the answers soon. PM is often mis diagnosed, it's sometimes difficult to find the right answer especially without the specific auto antibodies. I know you will take your suspicions to your doctor and maybe they will do a further muscle biopsy. I will be thinking of you and wishing you well. Best wishes. Autumm

Hi Autumm,

Thanks for your encouragement. I had a muscle biopsy in 2011, so I hope there will be another review of the results. I think the proof is in that biopsy report..

I wish for you a great day and a positive start to the New year.

Purr.
BK

Hi Buttercup. I wish all the very best for you too. It will mean another muscle biopsy or a different expert to look at the last one if they still have the tissue. Best wishes. Autumm

This is exactly why I am investing in a visit to Johns Hopkin Myositis clinic next week. I was diagnosed with PM out of default and I just don't seem to be responding the same as other PM patients. I want to talk to experts in the field that deal with Myositis every day. We will see what they say.

There is lots of promise with the gene therapy trial for IBM patients. Regardless of diagnosis, we all owe it to ourselves to live the fullest life we can with whatever level of adjustment we require to function. Easier said then done, I know.

There has been lots of discussion at the TMA conferences about how there are probably way more than 3 types of Myositis. Then throw in some cross over diagnosis and we are a big mystery. They have talked about a "necrosis" PM that results in high CK levels and varied responses to the standard medications. Have you had your antibiodies tested? There are a bunch they have identified that show different progression of the Myositis.

I agree with discussing with your doctor and asking either for a referral to a center of excellence or further research to confirm your diagnosis. Usually IBM doesn't respond at all to Prednisone or any other drugs including Rituxan and IVIG.

I forget what your history is but have you had any response to any medications? What is your CK?

I was also diagnosed with PM by default and do not respond to prednisone and my CPK is always up - reduced through use of Imuran but now never goes down. My muscle biopsy was not definitive and just said inflammatory myositis.
When I first got the results I heard the 2 specialists at the Nerve and Muscle clinic arguing with each other about my consultation and he said "But it doesn't matter ...they are both treated the same."

Buttercup do you have tingling in toes and legs? Do you have mobility concerns? Do you get severe hip pain? Do you have weakness in the wrists and fingers that causes difficulty with buttoning, and other fine motor tasks ? Do you trip over? These are some of my symptoms.

Hi Friends,

Lexis...My last CK was 898. I had 4 bags of Rituxan, then had to wait a couple of weeks to see if it would make me stronger. It really didn't, just slightly. Current CK is 740 (I think. I'm going by memory). Whatever the exact number, it is still in the 700's. No real improvement.

And I now have vertigo when I bend my head down to pick up an object off the floor. And I nearly lose my balance sometimes, but catch myself so I don't fall. Plus, I'm having trouble using my fingers when picking up objects and weakness in my wrists and forearms.

These new symptoms, plus the Rituxan failure, is why I think I might actually have IBM instead of Poly. My Rheumy says that Poly should get better and the CK level should be going down to under 120 with treatment of Prednisone & Methotrexate. However, mine stays in the middle. Highest is 1048, lowest is 152. Initial diagnosis CK was 6600. IBM typically is no higher than 10X the scale or 1200. I've never been over 1000 after the initial steroid treatment of Dexamethasone brought to down from the 6000 number.

And my aches & pains stay pretty much in my lower limbs. My forearms are weak, and my fingers, but I can lift my arms over my head, which is not possible with PM (or so I've read). And yes,, Freelee, I have most of the symptoms you wrote.

There is a flexibility test I found that I'm taking to my doc today. It is suppose to indicate the possibility of one having IBM. I'm going to fill this out for my doc. I'll write again and tell everyone what goes on at my appointment.

Thanks, friends, for all your encouragement.

Purr.
BK