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.
Hey everyone, I haven't been on here in a long long time. Here's what's going on with me if you care to read!
My PM symptoms began February 2009, and I was diagnosed May 2010 (CPK = 7,200). I started on 60mg prednisone. I got a lot better, but had some serious problems with the prednisone so I had to come off of it quickly. From there, scared to go back on prednisone, I tried an antibiotic therapy for about a year, maybe a little less. That did not work, and I got very sick--my CPK was 14,000. I decided to go on azathioprine and a small amount of prednisone. A year later my CPK is 1,600, and I'm feeling a lot better.
The thing is, I recently moved, and therefore had to establish myself with a new doctor. The new doctor has decided that, since I still have inflammation, I have "resistant myositis" (which I don't see, because only a few months ago my CPK was 4,000). She wants me to go on rituximab, which seems horrifying and extremely risky. So now, once again, I've been launched into this whole what-do-I-do-now thing, and I need to choose a course of action.
My questions for y'all are... have any of you been to the Mayo Clinic or to John's Hopkins, and how was that experience? Specifically, I am trying to find a doctor who will work with me without throwing terrifying drugs at me. I want a doctor who will take a nutritional approach. I am doubtful, but have ANY of you who have been to either of these clinics seen a doctor who takes a more holistic approach?
I myself don't see the point of me going to these places if they're going to say what my current rheum says. But my family trusts those clinics and wants me to go.
My PM symptoms began February 2009, and I was diagnosed May 2010 (CPK = 7,200). I started on 60mg prednisone. I got a lot better, but had some serious problems with the prednisone so I had to come off of it quickly. From there, scared to go back on prednisone, I tried an antibiotic therapy for about a year, maybe a little less. That did not work, and I got very sick--my CPK was 14,000. I decided to go on azathioprine and a small amount of prednisone. A year later my CPK is 1,600, and I'm feeling a lot better.
The thing is, I recently moved, and therefore had to establish myself with a new doctor. The new doctor has decided that, since I still have inflammation, I have "resistant myositis" (which I don't see, because only a few months ago my CPK was 4,000). She wants me to go on rituximab, which seems horrifying and extremely risky. So now, once again, I've been launched into this whole what-do-I-do-now thing, and I need to choose a course of action.
My questions for y'all are... have any of you been to the Mayo Clinic or to John's Hopkins, and how was that experience? Specifically, I am trying to find a doctor who will work with me without throwing terrifying drugs at me. I want a doctor who will take a nutritional approach. I am doubtful, but have ANY of you who have been to either of these clinics seen a doctor who takes a more holistic approach?
I myself don't see the point of me going to these places if they're going to say what my current rheum says. But my family trusts those clinics and wants me to go.
I don't know when I will see him again as today was his last infusion this week., but if I see him again I will get some information from him. Where do you currently live?
I have been to John Hopkins twice, and have PM ILD. I saw a neurologist and pulmonologist. Your doctor would need to write them a referral letter.
I was so glad I went as Myositis is all they do so they know the latest and greatest. They do not have a holistic approach, but do have a nutritionist that Meets with you . You get a feeling that you are on the right path and get a treatment plan as well as the big picture items (screenings, etc). They listen to you and take the time to go over everything.
I have heard good things about Rituxin. Hope this helps -:)
I understand your concerns about terrifying drugs. This disease is difficult. Good doctors will be able to explain the treatments and how they will benefit you. I would discuss your desire for the holistic approach with the medical staff. I think if holistic would work for your situation, then the doctors would go that route. If you do have resistant myositis, then relax and listen to the suggestions of the doctors. I know you have a difficult decision, but I think you have everything to gain by complying with the doctors at JH or Mayo.
Good luck on your decision and keep us posted.
However I know they have at least 3-4 myositis docs in that group (MN location).
Tricia
I would just rather find a doctor HERE who could help me, and one who considered the whole body. I understand the idea that you have to reduce the inflammation, but none of these are long term solutions.
I'm sure y'all know how I feel... hahaha... I'll keep you posted :)
*On the positive side, I feel great right now and my CPKs have come down from 14,000 to 1,600 over the past year so hurray!
As for natural treatments, you might want to try an anti-inflammatory diet as has been suggested. (Dr. Andrew Weil has one on his website.) For me a gluten-free diet (and sometimes grain-free) works well. Others have found a vegan diet, or Dr. Joel Fuhrman's diet, to work for them. Omega-3 oil is supposed to be good for fighting inflammation, as are vitamin d3 and CoQ10. Tumeric is considered an inflammation-fighter, but I don't know how to use it in food unless a recipe specifically calls for it. I use a supplement that contains both tumeric and boswellia, which helps me. Best wishes to you.