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ranpar01
06-23-2010, 07:48 AM
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
06-23-2010, 09:21 AM
I have heard of it before but I didn't know that it was used to treat Wegs.

Sangye
06-23-2010, 12:10 PM
I've never heard of it being used for Wegs, either.

elephant
06-23-2010, 12:37 PM
I have heard it before but not used for wegeners disease.

Jack
06-23-2010, 06:16 PM
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
06-24-2010, 04:15 AM
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
06-24-2010, 04:16 AM
www.cochrane.org/reviews/en/ab007057.html (http://www.cochrane.org/reviews/en/ab007057.html) here is a web page with limited info on IVIG for WG

ranpar01
06-25-2010, 05:26 AM
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
06-25-2010, 06:44 AM
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
06-25-2010, 07:51 AM
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

ranpar01
06-30-2010, 07:03 AM
Well, my Dad just got his third infusion of IVIG and continues to sing it's praises. It may not work for everyone but he is very happy to finally find a treatment that has him back to his 'new normal' and out of the hospital. He's getting a treatment every 3 weeks and he says he can really tell the difference, especially the first few days after the infusion. It seems like this would be a good treatment for someone with a supressed immune system that has trouble fighting off infections and keeps catching every bug that floats by. That was my Dad's issue. At one point he had bacterial, viral, and fungal all at once...it was crazy. Thanks again LisaMarie for the info!

Sangye
06-30-2010, 07:47 AM
That's great news, Randy. I hope your dad keeps improving. I wanted to ask Dr Seo about IVIG last week, but he answered so many other questions I didn't want to take more of his time.

If anyone has an appt with a VF doc coming up, please ask about the status of using IVIG for Wegs.

LisaMarie
07-14-2010, 05:51 AM
I asked my WG specialist about IVIG he said he will not use it yet because there is not enough data yet ...but a there is a current study in progress so he may use it at a later date...Glad it is working for some...it's an easy infusion for the most part:o

ranpar01
07-14-2010, 08:24 AM
Thanks LisaMarie for the additional info. My Dad is still doing well on the treatments and has even been able to travel a little bit. This is the longest he has gone between hospital stays in quite a while and we're all very happy to see him out and about again. Take care.

Randy

elephant
07-15-2010, 11:32 PM
Thanks Lisamarie for for info too.
Ranpoar01-Keep us updated on your Dad. So glad the IVIG is working for him.