View Full Version : Ivig

11-03-2010, 03:44 AM
Carter goes tomorrow for IVIG. Has anyone else done this or needed it?

11-03-2010, 06:09 AM
I know someone on this forum had it done, can't remember who.

11-03-2010, 05:35 PM
I have had IVIG. I wish I could tell you more about it. It was quite some time ago and I was very sick at the time. I do remember that it seemed uneventful and rather boring. I had no problem with it. Why is Carter getting IVIG instead of Cytoxan or Rituxan? I'm just asking because I think I have had every treatment known to WG these past few years. Currently I am getting Cytoxan infusions every two weeks and it seems to be helping me more than the other treatments. I would expect IVIG to be breeze for Carter.

11-04-2010, 02:11 AM
Other than me2, I've never heard of a Weggie getting IVIG. It's not a regular treatment, that's for sure.

They do use it a lot for other AI diseases like scleroderma. Last October when I was getting my first round of ritux, a woman next to me was getting IVIG for scleroderma. She'd had a couple already and said she'd made good progress. When I went back for the second round in March, she was there again. I couldn't believe how much better she looked (scleroderma causes tightening of the skin, so the face is distorted and tense). This summer I ran into her at JHU and didn't even recognize her. She looked totally "normal" and was walking briskly without any assistance. Made my day.

11-04-2010, 02:22 AM
It is not the regular treatment and I do hope to hear why Carter is recieving it. It has been investigated. I remember reading up on it and it seemed its use for WG was not strong in the literature.
Me2 has recieved many 'irregular' treatments. ha

11-04-2010, 02:25 AM
Carters dr. said his immunoglobin is very low, it was at 400. I guess it can lower when you get cytoxan. With cancer pts it usually lowers to 500.( I am not sure what normal levels are.) I looked up IVIG yeaterday and it did say it is used for treatment of WG. But i don't know really what it is supposed to do for him. I will find out more today at UCLA.

11-04-2010, 02:36 AM
There is an article by Dr Langford on the use of IVIG for WG from 2008. I could not find it this quickly but it is very current and done by one of the most respected and experience doctors in the WG field. I have to pay for access to this article online but since you are going to UCLA you could go to their library and get access to the full article for free and email to yourself , or print it if they let you. I recently found that I can get access to full articles like this at the University where I am treated. Online they would cost me 35 bucks a piece.
I now save up lists of articles that I want to see and look them up when I go to the U for a doc visit.
Best of luck today.

11-04-2010, 02:50 AM
What I remember hearing at the conference was that literature didn't bear out much success with Ivig and WG. If I am remembering correctly, I think it made patients feel better but did not affect the underlying disease course.

11-04-2010, 02:56 AM
Just feeling better would do for me. ;)

11-04-2010, 02:57 AM
I think Dr Langfords article says something close to that Jan but I didn't want to say so because I am totally relying on 'an old memory of a sick guy'. Older articles thought IVIG looked promising. I believe that is how I ended up on it. I think it was right AFTER I recieved treatment that my doc found Dr Langford's article. In fact, my insurance would not pay for the multi-thousand dollar bill and the University ended up eating the bill without really telling me why (I'm NOT complaining). I think the article by Dr Langford was maybe available at the time of my treatment and they missed it. Once again, mememories of a sick guy - add grain of salt.
It sounds like Carter's case could be very different from mine too. I was not low on immunoglobulin at the time. I was given treatment purely for WG.

11-04-2010, 02:59 AM
Feeling better is also not covered by my insurance.

11-04-2010, 01:24 PM
I give IVIG as home infusions to patients with multiple diagnosis and they say they have more energy and and better mobility after the infusion....it has been used for WG...but it is just as they say to relieve symptoms of our lovely meds. most patients take tylenol and bendryl as well as a bag of hydration fluid...i have never had any problems giving it....so i hope it is a cake walk for Carter