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
Not an easy road, thinking of you and best wishes.
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.
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.
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?
has ivig improved your ailment?
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.
good to know thanks. I have had just the treatment but have 2 more planned.
Recently diagnosed with dermatomyositis 
Inclusion Body Myositis 
21and new to having dermato, looking for guidance on how the treatment will be!
Antisynthetase syndrome and Rituximab