Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


IVig -treatments

  • Please log in to reply
8 replies to this topic

#1 TJ903


    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts
  • Location:Merritt Island, Florida

Posted 25 January 2009 - 04:18 AM

IVig keeps popping up- I can't really understand what it is or how it works. Has anyone had treatments? Does it help, and what is it exactly?

Many thanks again for letting me pick your brain-pans! -TJ

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 25 January 2009 - 06:09 AM

Hi TJ,

Janey's is the brain-pan you want, but I'm not sure she'll see your posting before your appointment on Tuesday. Hopefully somebody who has had experience (I haven't) will reply. Our members are just great!

If you use the "search forum" button up in the left-hand end of the purple bar, and search on "IVIg", it will bring up the subject wherever it occured in Forum postings.

In the meantime we have a page on IVIg (Intravenous Immunoglobulin).

Hope this all helps.

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 JG07


    Senior Bronze Member

  • Members
  • PipPipPip
  • 49 posts

Posted 25 January 2009 - 07:50 AM

I have been getting IVIG twice a month since November. I have a lot of lung issues and they are trying to slow the progression. I also have lupus and shrinking lung. I can tell that my skin has softened a bit. My breathing has remained the same so I consider that a good thing because it has not gotten worse. I am going again in Feb for another round. Then in March I have an appointment to go to John Hopkins. I will find out if I stay on IVIG or go to something more aggressive. IVIG treatment itself is not too terrible; very little side effects that only last a day or so. The worst part is being stuck in the hospital days in a row for 5-8 hrs.

Good luck.

#4 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 633 posts
  • Location:Minnesota

Posted 25 January 2009 - 02:11 PM

I too have been doing IVIG and had my last treatments in December. From what I understand the IVIG is the healthy blood from people that they give you to strengthen and help yours. I don't think mine is working so I am waiting until I see my rheumatologist in February to see what he says about it. When I have the treatments it takes 3 days and I check in at 8:30 a.m. and I'm not done until 5:00 and then I go home and go back the next day. This is done 3 days each and every month. It is terribly boring and long so if it's not working that's why I haven't been doing it in January. It's very expensive and at first my insurance denied the coverage for it but we then appealed it and they then agreed to cover it.

I hope this helps some.

Warm hugs,


#5 ashu


    Bronze Member

  • Members
  • PipPip
  • 25 posts

Posted 25 January 2009 - 06:52 PM

Hello ,

My daughter has recieved I.VI.G when she was very sick. This drug is given as an adjuvant to immunocompromised patient. This is an immune booster which is given intravenously in a monthly schedule for 2-3 doses depending on doctor.

m/o of ashu

#6 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 29 January 2009 - 11:30 AM

Sorry I'm late in getting to your request for information, but it looks like you've already received quite a bit of good stuff. I was started on IVIg infusions 3 years ago. The main reason for me was to treat my polymyositis. It has helped in that regard tremendously, but I think it has also helped with the scleroderma since I haven't been getting worse, only better. I started with a 5 day infusion, about 3 hours per day each month for 3 months, then went to 6 weeks. My current treatment is 3 days (6-7 hours/day) every 8 weeks. I'm actually beginning to wonder if I even need it anymore. Something to discuss with the rheumatologist next month.

For me - IVIg has been a blessing. It doesn't work for everyone because of what it is and what may be causing each person's particular disease. IVIg is a solution of IgG antibodies with a few IgM antibodies mixed in (proportions differ depending on manufacturer and your requirements). These antibodies are extracted from the blood donations of thousands of donors. The main antibody is IgG which is the most common antibody in our body (see Margaret's link). From my understanding, it is important in helping the immune system work properly.

If administered properly, IVIg infusions have little to no side effects. The main criteria are to start off slow and ramp up to maximum flow rate. I've had to teach a couple of infusion nurses this. <_<

Hope this helps. How did your appointment goes? Any decisions made?

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 JG07


    Senior Bronze Member

  • Members
  • PipPipPip
  • 49 posts

Posted 29 January 2009 - 03:51 PM

I have been getting IVIG 2x every 4 weeks since November. My recent blood work shows very elevated BNP, which puts me at risk for heart attack/stroke. I also have high CRP and ESU also showing that I am at risk for both. I am wondering if this is a result of IVIG or related to my lung disease. I am waiting to see doctor here and going to Hopkins in March. Seems like 1 step forward and 2steps back, again.

#8 TJ903


    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts
  • Location:Merritt Island, Florida

Posted 30 January 2009 - 03:35 AM

Back from Johns Hopkins, with more information, some good some not so good. I am not eligible for SCT because I've had cancer twice in the last eight years and they are adamant about me not receiving the stem cells because the chances are very good that my cancer will come back with a vengence. But, there are other treatments like IViG that I can get. I was a bit upset, but then again there is another option. So all is not lost.

Thanks for the info. on IVig. I feel much better about receiving it. Will have to fight for it I am sure, and now after fightin my insurance company for 18months to participate in the SCOT trial, I shall have to cancel the hearing at the state level, makes no sense to fight and lose for something that I cannot receive anyway.

What are the possible side-effects of IVig? Also, any new information on Gleevec or Revimmune?

Now that I'm back home in Florida, I do not envy those who suffer with this disease who also live up north. Must admit tho' I found the bracing cold air - refreshing!!! Made me miss my home in PA.

Lots of warm hugs coming to everyone!!!

#9 Danielle's Mom

Danielle's Mom


  • Members
  • Pip
  • 7 posts
  • Location:Indiana

Posted 20 February 2009 - 08:11 PM

I had IVIG treatments in July of 2007. I had 2 treatments, 1 on Thursday and 1 on the next day Friday. These 2 days were very long like 10 hours. I drank lots of water like they wanted you to and my days went well. When I went to bed Friday night I didn't know anything until Monday or Tuesday. The extreme amount of liquid had overloaded my kidneys. BUT I had compromised kidneys already. I was in ICU for a couple of days and in the hospital for a few days but my ulcers began healing and I did feel better for a while. I really feel that if I could have finished this treatment, it would have had some success. I met a lady at Cleveland Clinic who had the treatment and she had experienced much success. Good luck.