View Full Version : My latest flare/Considering IVIG

02-02-2008, 08:24 AM
Hello everyone!
It's great to have a place where people actually listen to your concerns! I am so thankful for being a member of this forum..
Well, I just spent 10 days in hospital because of a bad chest infection and a nephritic flare. My serum creatinine level was high, albumin critically low, and my blood pressure wouldn't go down despite being given 4 antihypertensives--all indicative of lupus activity.
So, I was given 3 IV treatments of Solumedrol (type of steroid) and put on 60mg of Prednisone--something I've managed to avoid for the past 3 and a half years!! I also received 1 treatment of cyclophosphamide; my next two are coming up. For the infection, I was given 3 daily doses of IV Meronem for the whole 10 days. I got better but was drained in the process..it's just too much.
Fortunately, my renal functions quickly improved but my albumin level is still low, Hb and RBCs are dropping (taking Fefol for that), and of course I feel like a water-filled balloon. But it's a relief to be free again!
Now, I am going to see a consultant in another hospital for a second opinion on Monday. There, they are treating their lupus patients with IVIG (Intravenous Immunoglobulins) and say it has worked very well. The doctor who diagnosed me suggests that I try this treatment instead.
Has anyone been treated with IVIG before? Can you share your experience with me? I found some info on the net, but it's all very general.
Thanks a lot forum friends..hope you're all coping greatly. God bless you all. Dina.

02-02-2008, 12:24 PM
Hi Dina;

'fraid I can't comment on the IVIG, but I'll cheer on your recovery from the bout with the chest infection and nephritis and everything else! I hope you'll continue to improve, and that you'll be able to let all of us know how the IVIG goes.

02-03-2008, 08:12 AM
Hello Dina -

I'm new to the forum. I read your post, and I just wanted to offer some support. It is obvious that you have faced your latest challenge with courage and grace. I do not know anything about the recommended treatment you are researching, but I hope it is something that will help you.


02-05-2008, 12:11 AM
Jana and hatlady,
Thanks for your support.
I am a bit surprised that nobody is familiar with IVIG. I've been told that it has proved to be effective in keeping lupus nephritis patients in remission for years, and it has no side effects. I will try to get hold of any papers I find on it and share them with you.
If any of you have a doctor's appointment coming up, you may want to ask about IVIG and maybe tell me...
Take care.

02-06-2008, 12:53 AM
My wife has received these treatments for a couple of years now. It is a cutting edge treatment and a large percentage of the Docs in the U. S. are afraid of cutting edge. I will try to get the research studies from this and post on this site.

02-10-2008, 01:44 AM
I thought so too. They tend to rely on Cyclophosphamide a lot too. I will also try to find articles published on the effectiveness of both drugs in controlling lupus nephritis. I now have access to a medical school library that has really good stuff.