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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Buttercup-Kitty 07/27/2014

Meow,

Am scheduled for IVIG starting tomorrow. One per day, ending Friday. My CPK is only 545. I'm so sad. Those of you who have taken this infusion....what did it do for you?

I came through 4 bags of Rituxan a couple of months ago. Now this . 5 bags of plasma. I didn't know what to expect from the Rituxin and I don't know enough about this to be thankful. Just scared...again.

Any feedback is appreciated. Thanks for understanding. None of my friends or family understand anything about PM.

Purr,
BK

autumm 07/28/2014

Hello Buttercup. I am sorry to read your post. I don't know anything about this treatment. Lots of people have it and it works fir them. I believe it takes about a month to 'kick' in. Do let us know how you are doing. Best wishes. Autumm

amberhere 07/28/2014

Hi Buttercup - like Autumn I do not know about this treatment but I do send you good luck and I am sure it will make you feel better. Take care.

trpt1 07/28/2014

Hi Buttercup, I personally do not have experience with either the Rituxan or Ivig. I know that you could talk to the patients at The Myositis Association www.myositis.org to hear about both infusions.

I hope that you will see a lot of benefit from both infusions. I will put in some prayers for your protection from the side effects. Keep us posted.

Buttercup-Kitty 07/28/2014

Meow,

Thanks, friends for everything. I'm typing with one hand due to LH port, Am hopeful this treatment works.

Purr,
BK :)

roxannak 07/29/2014

Good day Buttercup
I am hoping you are feeling good with your IVIG treatment. I have had a few if them and they gave me lots of energy and took my discomfort away for a few weeks. They helped me with my prednisone taper. I usually got 30g at a time
Drinking lots of fluid helps prevent headaches. I had only one headache in 2 years
Wishing you the best with thus tx

Roxanna

Buttercup-Kitty 07/29/2014

Meow...

Thanks Roxanna. The worst is the Port in my left wrist. Have to wear it until Fri.

I'm also already feeling a bit better. No pain, no gain, I guess.

And one-handed typing,

Purr,
BK

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