Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi Everyone,
I very rarely get on here anymore, because quite frankly I got very sick of thinking about Polymyositis. But I don't have that luxury anymore because I've been feeling bad!
I was dx with PM in 2009 when my CPKs were 7200. They've gone up and down, the lowest they've been on record was 800, and the highest was 14,000. When I felt my best (in the past 6 years) they were actually around 2,000 so it doesn't always correlate with the way I'm feeling.
My question for all of you is this: Has anyone else had this problem where they're CPKs just NEVER normalize? Maybe 6 years isn't so long, but it sure feels like it. I've been on prednisone, imuran, and now IVIG. The IVIG seems to be helping but I've only done 3 treatments (and they got a little interrupted because I had to move suddenly).
Unfortunately my heart is now involved and I have atrial fib--they are still trying to figure out if it's actually from the PM, but since I'm only 26 it's their best guess.
I would love to know if anyone else has what my doctors are now calling "refractory PM." Also, if anyone has any experience with IVIG taking a while to "kick in," I'd love to hear it!
I very rarely get on here anymore, because quite frankly I got very sick of thinking about Polymyositis. But I don't have that luxury anymore because I've been feeling bad!
I was dx with PM in 2009 when my CPKs were 7200. They've gone up and down, the lowest they've been on record was 800, and the highest was 14,000. When I felt my best (in the past 6 years) they were actually around 2,000 so it doesn't always correlate with the way I'm feeling.
My question for all of you is this: Has anyone else had this problem where they're CPKs just NEVER normalize? Maybe 6 years isn't so long, but it sure feels like it. I've been on prednisone, imuran, and now IVIG. The IVIG seems to be helping but I've only done 3 treatments (and they got a little interrupted because I had to move suddenly).
Unfortunately my heart is now involved and I have atrial fib--they are still trying to figure out if it's actually from the PM, but since I'm only 26 it's their best guess.
I would love to know if anyone else has what my doctors are now calling "refractory PM." Also, if anyone has any experience with IVIG taking a while to "kick in," I'd love to hear it!
At the different TMA conferences, they are talking about the different types of Myositis. There are a few that have super high CPKs like you and they never go down. Remember Red Salazar? He is like that too. I think it is a type of Myositis they are discovering. I know Red found the best results from IVIG and Rituxan. He also does IV steroids and Methotrexate but I don't know if they do them all at the same time.
I agree with Autumn, you need a Myositis panel blood test. It will check your anti-bodies and help give you and your doctor a further indicator of what is going on and what you can do with it. Last year, at the conference, they had a full slide showing each antibody and what a positive result will show and what drugs seem to work best for it. I just recently had the blood panel done as part of my visit at Johns Hopkins. Mine all came back negative which made them decide I probably have IBM. Good to know! So ask your doctor for that blood panel so you know what you are working with.
I've not had IVIG but I was just approved for a trial of it. I've not decided that is what I want to do. I am terrified of side effects. Have you had many side effects? I do think it takes a little while to work. I did hear that it only stays in your system about 30 days (why you need it every month) so I would think you would see results quicker than 6 months. Hopefully someone will jump in and share their experience. I want to know too.
When IVIG was prescribed by Johns Hopkins, she said to be sure I get it over 5 days. She said that was the best results. What is your dosing?
Hang in there and keep us posted periodically on how you are doing. It is nice to see you pop up in here.
I agree with Autumn that The Myositis Association at www.myositis.org is a great resource. Talk to people and read up on PM.
Ivig builds autoimmunity. I know there are many on this site who will be able to share their infusion experiences. Do read up on the infusion types on the TMA site.
I will put in some prayers for you. I hope the Ivig will kick-in soon.
Try to stay relaxed, I know that is easier said than done. Read up on treatment types and discuss them with the doctor.
Best Wishes.