Myositis UK

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Hi all,

I was dx with dermatomyositis sine myositis due to my Chronic Lymphocytic Leukemia (CLL). It took just over 6 months of biopsies, blood tests, the other dermatologists coming in and looking at me. Once dx I chose to start on the CLL treatment. After 6 months of that (12 months on steroids) I ask d to start on IVIG. This happens this week. I am told it is a tough road for me due to all the added layers of complexity

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Not an easy road, thinking of you and best wishes.

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Hi, I've been on IVIG for several years with no issues, as long as you have a very slow infusion rate and plenty of water you should be fine. Good luck.

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Hi,

I was diagnosed 3 years ago with CLL and 6 months ago with polymyositis so understand how daunting this must feel. Good luck and keep positive.

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Hi All, I just had my third IVIG and have been reducing my steroids from 25mg and now am down to 15mg daily. I drop 5 every 2 weeks. When I get down to the last 5 I will take it even slower. How many of you had mouth sores or raw skin due to your situation?

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has ivig improved your ailment?

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Sickofpm (cute handle), I am getting better. It is more of no new sores more than anything else. The sores that I have don't seem to completely heal. My skin is so discolored. I use steroid cream on the worst places. I use a large bandage, put steroid cream on it then put it on and leave it there for about 24-48 hours. I do this as most of the places are under the clothing. My mouth is the only thing not really healing. There is a slight possibility that my mouth sores are from my CLL treatment. I am also down to 10mg of Prednisone. The overall answer is yes the IVIG is helping. It did not seem to start helping till I was about to have my 3rd infusion. IVIG's 1/2 life is about 28-30 days. I would recommend it over any other methods first as it is the least harmful to your body.

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good to know thanks. I have had just the treatment but have 2 more planned.

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There are different percentages of IVIG as well as different protocols for IVIG (1 day a month - 2 days a month, 3 & 4 days a month). I may have to get my IVIG increased. I see my Derm. Dr March 6

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