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.

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Muscles & Bones
/ Polymyositis & Dermatomyositis Support Group

Headed to Oregon Health Sciences Univer.

wonup
wonup
Hi Everyone: Well I've had this appointment for two months at OHSU in Portland. I guess they have an amazing myositis dept. there, even though I'm being treated by a Rheumy here in town, who has successfully treated poly and dermotamyositis patients before. I've been in a wheelchair for the 12 weeks since diagnosis, walking a bit with a walker and crutches, getting better, especially now we are ramping up MTX. But I'll be interested in what the docs say at OHSU. In my muscle biopsy, I didn't have lots of infiltrates into the muscle fiber, so I may have more of a necrotizing myopathy, more acute but responsive to steroids, and especially IVIg treatment. I'll be very curios what they say. They may have me carry on, or suggest different treatment. Then I negotiate with Rheumy, I guess? I'll keep you all posted. Not really looking forward to a two hour car ride and two hour appointment. That's a long time for me to sit, but at least it's more information.....
deleted_user
deleted_user
Good luck!
deleted_user
deleted_user
Hello Wonup,

Hope you get lots of positive information.

Enjoy the fall colors along the way and they might distract from the long ride. Singing is good too! : )

It's great to know there is a place focusing on myositis up that way. We are thinking of relocating to Washington but the myositis has caused a delay.

Looking forward to your next post.

Peace.
lexisgirl
lexisgirl
Good luck with your appointment. I would ask them how they coordinate with your current Rheumy or how your treatment plan should be carried out and your care monitored.

In the 2011 Myositis conferenece, they mentioned for those with Neucrosis, Rituxin is the best treatment option. I would ask about that.

Let us know what you learn so we can learn too.
trpt1
trpt1
It sounds like excellent care! I hope you will improve quickly. I have never been to that part of the country, but I know it is pretty. I have put in a prayer for you. I hope you will find some good answers for your treatment.
nanny1611
nanny1611
So glad you're getting a second opinion, wonup. Hopefully they will give you even more answers and lots of help. If the myositis team at OHSU gives you a different treatment plan that what your rheumy has prescribed, ask them to coordinate treatment with your rheumy. Best wishes to you for a speedier recovery in the near future. BTW, I understand you not looking forward to a long car ride. Prolonged sitting is stressful for me also.
lexisgirl
lexisgirl
Good luck with your appointment. I would ask them how they coordinate with your current Rheumy or how your treatment plan should be carried out and your care monitored.

In the 2011 Myositis conferenece, they mentioned for those with Neucrosis, Rituxin is the best treatment option. I would ask about that.

Let us know what you learn so we can learn too.
deleted_user
deleted_user
All the best. Get OHSU to send a report to your Rheumy. They can help local guy tailor the plan since they will see much more of every type of myositis. I found when i got to my Appt two hours dirve away for the first time, my adrenalin kicked in and i did great. I slept on the way home. Extra pillows if needed to keep you upright!!!

I go to STanford every 3 or 4 months, but when i needed IVIG, they were comfortable ordering it and then they let the local guy signed it so i can have it given to me closer to home. the team approach is a winner in my experience. Get emails and best way to contact them in an emergency and for regular things like refills... My team has an amazing Nurse that manages quite a bit of it. I will take her a gift next visit!!!

You can do it!!!
Shawna
deleted_user
deleted_user
All great advice. So glad you are going to the center. Definitely ask them how they coordinate with local team. I find that my local team is reluctant to engage or read their letters. They are all so busy so I am my own health advocate! -:)