Hi McCourtjs. Can't comment on this one. I have PM so no rash. I wish you all the best. Cellcept is a great drug fir so many, perhaps the increase will do the trick. Best wishes. Autumm

Hi Mccourtjs, The Myositis Association website would have a lot of folks who would be able to tell of their IVIG experiences. The site is www.myositis.org Many Rituxan, Acthar, and IVIG patients discuss infusion experiences on that site.

I do not have experiences with the big infusions.

Best wishes. I hope you will experience some improvements with the treatments. I will put in some prayers for your safety too.

M
Dx in May of 2012 and had IVIG along the way. First once a week for a set of three then once a month for a set of 6 then once a month since last sept until June. 30g each time. It helped alot. It gave me energy and I felt better for about three weeks.
I am currently looking into a subcue (scIg) program here.
Will keep you posted on that!

talk soon
roxanna

IVIG has been a life saver for me.. I get it every 3 weeks, I could barely move and my breathing was affected when I was hospitalized initially, so they did a 3 day loading course and then every 2 weeks for a while, we have moved it to every 3.. it is my miracle drug!

Very important though is to drink tons of water and watch the rate.. I have gotten aseptic meningitis from the rate going too fast.. I can't go over 100, otherwise I get chest pain, fever, and aspetic meningitis .. Women with a history of migraines are more likely to get AS as a complication.. Usually on day 4 after the infusion I start to feel like a normal person again and it's great! Good luck! :)

I'm like Roxannak...IVIG has worked well for me, but I haven't had it in over 6months because my veins are shot from getting it. I too am looking into doing the sub Q in home therapy but my insurance is fighting me on it. So I'm having it rough lately. Good luck to you and its worth trying

I started IVIG Treatments March 2013 and still having them. I get this done at infusion Center. At first if took about 2 1/2 hours, but now it takes about 3 1/2 hours because they are lowering how fast the IVIG going into my body. The amount of IVIG I am given is determined on my weight. At first I weight 140 lb so I give 4 bottles, now I weight 226 pounds and I use 5 bottles. the reason I gained weight is because I'm also on predisone which for me is a nightmare.
The side effects of IVIG where mild for me. Tired, headackes, upset stomaches, and dizzy. The dizziness was because the IVIG was being pumped into me to fast after the 1 first hour.
But mostly I would get a headacke the next day or week or upset stomach. Your hair growing faster,but where you want the hair to grow. I'm talking about facal, arm, leg hair growing fast!! maybe skin rash , reddness on the body, the side effects for me so far are mild.
I get IVIG 1st a month for 2 days.
My insurance pays for it so far and it's expenisive. My insurance pays 15,000 a month for 1 treatment. I'm not joking. My insurance is cobra for now then next year I will be on Medicare and I have no idea if Medicare will pay for IVIG who knows. But for now I IVIG and will continue until the end of year Decemeber which by then will be
1 year and 8 months treatment of IVIG
If you have anymore questions about IVIG just ask I my have not answered your question about IVIG treatment.
So far my treatments for Inflammatory myopathy, polymyositis has been IVIG and predisone. Hate predisone that drug is messing up my body really bad.
anyway, if you have anymore question about IVIG just ask OK