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.
Had the follow up appt today after biopsy and the dx is PM. Dr is going to attempt to get pre-approved the use of Rituxan. He feels strongly about NOT putting me on the Mextrate (sp?) one. I don't know how I feel about any of it. I'm just focusing on my diet since I can do that on my own. I might also go to an acupuncture clinic where they have chinese herbs.
I saw that someone posted this on the forum:
http://www.hnmrc.net/pd1837706206.html
I'm reading (and loving) the Eat For Health and Eat to Live books.
So a friend found some articles raving about removing Yeast and Gluten from a PM's diet.
Also another happy person with the Anti-biotic treatment: http://www.rheumatic.org/lianne.htm
I love to hear what all of you say in these discussions. So I wanted to open one up about:
Meds
* Which med fits who best?
* What should one be worried about if they take Rituxan? Besides that brain disease. Do you miss more than 1 day of work?
* Have you talked to Doctors about the use of Anti-Biotics as treament?
Diet/lifestyle
* Have you changed your diet in any way since your dx?
* What types of lifestyle changes have you made that proved to make you feel better? Diet? Certain Supplements? Acupuncture?
* Have you tried any alternative treatments?
:)
I saw that someone posted this on the forum:
http://www.hnmrc.net/pd1837706206.html
I'm reading (and loving) the Eat For Health and Eat to Live books.
So a friend found some articles raving about removing Yeast and Gluten from a PM's diet.
Also another happy person with the Anti-biotic treatment: http://www.rheumatic.org/lianne.htm
I love to hear what all of you say in these discussions. So I wanted to open one up about:
Meds
* Which med fits who best?
* What should one be worried about if they take Rituxan? Besides that brain disease. Do you miss more than 1 day of work?
* Have you talked to Doctors about the use of Anti-Biotics as treament?
Diet/lifestyle
* Have you changed your diet in any way since your dx?
* What types of lifestyle changes have you made that proved to make you feel better? Diet? Certain Supplements? Acupuncture?
* Have you tried any alternative treatments?
:)
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Meds are tricky. I still haven't found the right combo for me. I just switched to the methotrexate (I think that's the med your doctor didn't want you on) injection--actually I just gave myself my first injection all by my myself and I lived, so anyone can do it:). I also have started on Cellcept and have been on steroids and plaquinil since June (But high doses of steroids basically since November). Plus a plethora of vitamins and pain pills to manage the daily pain I have.
My doctors didn't want me to do Rituxin. They wanted me to try IVIG first, since it is pooled from plasma donors it is more 'natural?" at least that is my understanding. Anyway, I had my treatments on Wednesday and Thursday of this week and I *think* all is going well, still too soon to tell but I am optimistic. For the IVIG, because DM (and PM) require such large doses it had to be over 2 days, 6 hours apiece. And then I missed Friday at work because of the enormous migraine I had. It is my understanding that as I get more, they will be shorter and I will know how to handle side effects better. Hopefully someone that has done Rituxin infusions can chime in as to whether it is different from my IVIG experience.
Since it seems once people know that you have a chronic illness, you get a lot of unsolicited advice...one such case for me was a woman that had adrenal failure, and she went to acupuncture and took chinese herbs and it is what put her back on track to her health. I honestly don't know. I am too afraid right now to veer in anyway off my doctor's plan for me.
As far as lifestyle, I have a fastpaced job in healthcare consulting and save my energy for the job and come home and rest. I have cut out a few activiites. I find I can do maybe 1 activity at nite and then rest a few days. I am trying to walk longer and am steering away from weights. I have heard about alternative treatments, but think the meds are the way to go, but will research them. I just listened to a RA webinar and they said many times that quality sleep makes a big difference, keep aways from fats, sugars and since we have an inflammatory disease, to make sure our blood pressure and cholesteral are okay.