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

IVIG

mccourtjs
mccourtjs
Life has been busy so I have not posted in a while. I have successfully transitioned back to work, although very difficult at first and at the same time, began IVIG treatments. I had my 3rd treatment last week and felt as close to myself as possible considering our illness. Felt so good that I forgot to take my meds on time a few times. Good thing for good friends and family who look after me. Not sure if the IVIG is the reason for feeling good, but I think it has definitely contributed.I have had no ill effects from the treatment other than being tired the day of the treatment. A year ago, I couldn't get off of the couch and felt miserable. Tonight, I sat in the stands as my son one the WPIAL finals for soccer. I would not have been there if it was a year ago. carpe diem
nanny1611
nanny1611
This is wonderful news, mccourtjs. I'm so glad for you. May you continue to do well from now on. Best wishes.
autumm
autumm
Hi McCourtjs. Indeed 'cease the day' wonderful news. It has been a long road for you to get here and find the right Meds for you. Enjoy your feeling of being back in the swing. I am absolutely delighted for you. Best wishes. Autumm
trpt1
trpt1
Hi Mccourtjs, I am glad to hear your treatments are working well and this is great news!!! I also forget about my meds and I will get mad at myself when I forget to take them. I have a daily pill case and I have a system for checking off my calendar. I will often feel weird like I already took my meds when I have not taken them yet. My pill case works well, but my head just forgets and is strange.

I am so glad you are feeling well. Congratulations to your son on the soccer game too.
rebeccamolly86
rebeccamolly86
Hi- I was diagnosed with DM in April of 2012. My doc decided that it is time to give IVIG a shot. My first treatment is this monday...can anyone say (about) how long it took to begin feeling relief? THANKS!
autumm
autumm
Hi Rebeccamo. I cannot advise you on this treatment as I have never had it. Other people here will help or you could look at the TMA site where there is lots of information on treatment. Hope all goes well for you. Best wishes. Autumm
rebeccamolly86
rebeccamolly86
Thanks Autumn...I'll check out the TMA website.
mccourtjs
mccourtjs
Sorry Rebecca that I didn't respond sooner, but I haven't been on in a several days. IVIG as you have found out takes about 4 hours. It may take a few treatments until you feel better although I did notice a difference after my first one later in the week. I also have noticed that as I get closer to my next treatment, I notice that I am not feeling as well as I did. I was a little worried propr to my first treatment because I had read how some people have adverse effects, but I did not have any. I saw my rheumy today and he upped my prednisone back to 10 mg, doubled my cellcept to 6 pills a day and lowered my methotrexate to .6ml.