IVIG limit 70 grams/infusion????
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February 2, 2012 at 5:34 am
I usually receive 90 grams of IVIG every month.
Last month I was told that there is new literature indicating that giving a person more than 70 grams during one infusion is not recommended.
Has anyone else been told this or have you seen any info on it.
They described it saying the body can only absorb so much IVIG then the kidneys just filter it out.
interesting concept…waiting to hear if anyone else knows about this.
Rhonda
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February 3, 2012 at 2:19 am
Hi Rhonda. I don’t know if it is a new concept re: max. daily limits of IVIG. Hubby was getting 90 Grams of IVIG every 3 weeks for a number of months (he gets 100 now). He always had to get it over two days and they have done this since he started IVIG in 2007. He asked to get it during one sitting, but they have always refused. I think they just said it was too much to be safe.
Laurel -
February 4, 2012 at 4:54 am
I get 85g in one day, but they run it at a slow rate so the body has time to process it.
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February 4, 2012 at 9:19 pm
Thanks folks, I will see what happens when I go in next week.
I’ll let you know what happens.
Laurel and others in British Columbia, did you get a message that there may be a get together in the Lower Mainland for people with GBS/CIDP?
PM me and I’ll give you the contact name and number.
Cheers,
Rhonda -
February 4, 2012 at 9:50 pm
Hi Rhonda ~ I’ve been getting 80 grams Gammagard ea 6 weeks (max infusion rate of 250ml/hr). They begin at 50 and work up to the 250 in 15 minute increments. I was told as long as I can ‘tolerate’ that dose should be no problem. When Gammagard was a powder they could mix it to any amount based on my Rx and my infusions were done over two days – a real hassle for me because they left the ‘thingy’ in my arm overnight and I had to travel back to the infusion center next day. Then Gammgard went to a liquid and only came in 200 ml bottles (10% solution) and my Rx calculation was slightly higher than 80 grams (4 bottles x 200ml x 10% = 80 grams) but less than 100 grams or 5 bottles. So, I did some number crunching and found out that if I only got 80 grams, it could be done in one day and represented 17% less than Rx. I discussed this with my Dr. and he was OK with it as a trial. It worked (as much as anyone can really know about these things). The plus side for me was one day in the chair vs two – one day outpatient copay vs two – less Rx copay. I feel the same after treatments, save money, and think the 17% difference is offset by not having an extra day of travel and extra session in that uncomfortable chair. Are we having fun yet?
Back to your post about the liver only being able to process so much of the immunoglobulin in a day certainly has my attention and makes common sense to me. I have no desire to go back to a two-day session but neither do I want to waste the positive effects of my ‘go juice’. I’ve been told and read that over time the dosage is less effective but for the last 10+ years that’s been my diet (no prednisone) with no apparent change in my so-called health. The general idea between my Dr and me is – if it’s working don’t try to fix it.
I know we are all different when it comes to treatments, but I would be most interested in any references or comments from others. Thanks for posting your question – Best Regards. -
February 5, 2012 at 12:37 am
Well said Big tree.
I agree with you…”if it’s working dont try to fix it!” -
February 11, 2012 at 9:54 pm
Can IVIG damage any organs ie kidneys, liver?
I have gone for a blood test before starting, midway through, and
again after the end of the first course, 3 months. -
February 12, 2012 at 1:50 am
MTF – Good question. I am also looking for the same information. I’ve been on IVIG for 10+ years and would also like to know if any damage to organs – espically liver, kidneys… anyone? Thanks
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February 18, 2012 at 11:04 pm
BigTree,
I learned this week that the treatment used to be able to affect the kidneys because of the sucrose
in it. That has changed and is much better than it used to be.
As far as the time frame for all of this, I don’t know. You might want to discuss it with your
doctor. You’ve been on 10 years, and I’ve just started. There may be some info about it on the
web. -
February 19, 2012 at 2:32 am
I have been getting only 30g the past two treatments, but they are increasing it to 48g on tuesday… I had a lady at the infusion center next to me who gets 100g EVERY week!!!! That seemed like a lot! She went at a rate of 250, and said she didnt’ get any side effects besides feeling a little run down the next day wow! My dr said they have a limit of 65 or 70 for one day… if you need more than that you have to come back for a second day..
I get my bun/creatinine (kidney function) checked everyday due to the possible kidney issues.. though I think that is rare.. also I know people can get blood clots with it as well (PE’s DVT’s etc) … not sure if heart attacks and strokes are also mildly increased.. I think for any of those issues you have to have an underlying process that puts you at risk for it and I think even then those side effects are rare. … From what my dr’s have told me IVIG has the least side effects out of any CIDP treatments!
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