Immune Globulin

[ranpar01]

Just wondering if anyone else is getting Immune Globulin treatments? My Dad just had his second treatment (he'll be doing that via IV every 3 weeks for a while) and he seems to be responding very well to it. I did a search on the forum here and was surprised to see zero results come up. I'd be interested to hear if anyone else has any information on Immune Globulin for WG.

thanks,

Randy

[pberggren1]

I have heard of it before but I didn't know that it was used to treat Wegs.

[Sangye]

I've never heard of it being used for Wegs, either.

[elephant]

I have heard it before but not used for wegeners disease.

[Jack]

Yes, I've heard of it being tried for patients that do not respond to Cyclophosphamide. I don't think it is in general use.

[LisaMarie]

IVIG is a new drug being used for WG...it is rarely used and from my understanding only works for some...The infusions are not that bad per the patients i give it to in their homes...last 3-8 hours depending on dose...premed with tylenol and benadryl and can use a very small guaged needle to infuse it..22-24 guauge.....Make sure you keep hydrated ...drinkl plenty of fuild before during and after...if not you have to get normal saline boluses....None of the patients I give it to have WG...most have a chronic infammatory nerve disorder.....They all say they feel better have increase mobility and decreased pain after the infusions...hope it works for your Dad...Please keep us posted

[LisaMarie]

www.cochrane.org/reviews/en/ab007057.html here is a web page with limited info on IVIG for WG

[ranpar01]

Thanks LisaMarie, that is very good info. My Dad does get the benadryl prior to the infusion and I'll remind him to keep hydrated. He says that after the treatment he has a lot more energy. The objective, according to my Dad's rheumatologist, was to boost his defense system against infection since his immune system is severely weakend. The last time he was in the hosptital he had a very long list of infections that he just couldn't fight off. Hopefully these treatments will help keep him out of the hospital for a while.

At nearly $10,000 per treatment I can see why many doctors might shy away from prescribing IVIG. I'll be sure to update again later once my Dad has a few more treatments. So far, so good. thanks again!

[Sangye]

Given the obscene price of rtx ($40,000 for a month of treatment) as well as CellCept (about $900 a month), I don't think expense would keep a Wegs doc from prescribing IVIG. They just don't have the research on it yet. I don't know if there are studies being done. I know it greatly helped a woman with scleroderma that I met while getting my rtx last time. I met her in October during my first rtx round and barely recognized her in March. She looked great.

[LisaMarie]

Please let me know if I can be of any help on the IVIG info.....I am trying to get the pharmacy that delivers the IVIG to my patients to look into research on the affects of IVIG infusions with WG...so maybe they will look into it...I can only plant the seed and pray something grows