brand issues with IVIG?
AnonymousJanuary 13, 2007 at 2:33 am
Can anyone tell me if there is a better brand of IVIG than others? Todd has been treated with 3 different company brands- the best seems to be gammamune. However, yesterday was given a different brand (starts with a t) and had a bad reaction. When his neurologist found out he had developed purpura and terrible pain in his feet, he was livid- had not thought the home health agency was arbitrarily substituting the IVIG brands.
My question now is, can we expect long term damage from this?
Thanks so much, Sigrid and Todd
****together, we are one****
AnonymousJanuary 13, 2007 at 3:32 pm
I have been getting IVIG a long time, brand and infusion rate have always been the 2 most critical things for me. I only get Gammaguard now as it is the only one I don’t have a reaction to. If he hasn’t already tried that brand it’s worth a shot. I have another friend who gets IVIG and has had many issues with other brands, and she only gets Gammaguard now also. It has something to do with how the IVIG is processed. I hope that helps and good luck.
PS-Here is a link to the exact product that I get:
AnonymousJanuary 13, 2007 at 10:49 pm
When I was taking IVIG, the hospital I was going to for treatment seemed to only have two types. I found out that there are two methods for refining IVIG(possibly others exist that I don’t know about) — S/D, stands for solvents and detergents; and C, which stands for Chromatography. IVIG-C, I was told, should cause less allergic reactions, because IVIG-S/D might contain more traces of impurities including traces of the solvents used in refining.
Whether this is true, I don’t know. I do know that every time except once I was given Gamunex (manufactured by Talecris), and that one time I had fever chills for a few hours. On the other hand, there was another patient who couldn’t tolerate Gamunex, and instead always had to be given IVIG-S/D (no brand name, it was a generic supplied by Canadian Blood Services)
From reading here and other places, I understand that different people are more allergic to different products, and you may need to try everything available before you come up with one that is less trouble.
The good thing about allergic reactions is that they generally go away once the allergen is out of your system. The bad thing is that they are often uncomfortable and sometimes dangerous while they are going on. Are you pre-medicating with Benadryl or something like that?
AnonymousJanuary 14, 2007 at 1:47 pm
Over the past 10 years I have been on a number of different brands. The one that worked the best for me was Gammunex. Infusion time for 45 gms was about 2 1/2-3rs. For some reason they are having a problem with a government agency and will not manufacture this brand until the end of this year or maybe 2008. I have gotten Panglobulin the last 2 times but infusion time has more than doubled. On top of this it is in a sucrose base, Anyone who is diabetic needs to avoid this. I have been told by the nurse that it is possible that the next time I come for my infusion I might be getting another brand. She has told me that even the VA is having a difficult time in obtaining IVIG and the price is continually going up.
AnonymousJanuary 14, 2007 at 10:29 pm
Thank you so much for your help and information. THe first day he got Talecris- and that caused such terrible reactions we will never go there again. The secon day, they brought us gammunex, and he did fine. IN fact, he did so good that today we had our best day in a long time- lots of energy and great attitude 🙂
We premedicated with benadryl and solumedrol- though I hate the steroids. We are very sensitive to the steroids.
Again, I thank you all for your help- and thank God for this forum.
AnonymousJanuary 17, 2007 at 10:00 pm
Talecris is the manufacturer of Gammunex brand of IVIg. I am not sure what your husband got when, but I don’t see how it could have been Talecris on one day and Gammunex the other. He should ask to see his records for each infusion. He should write down the manufacturer, brand, and lot numbers for the IVIg, where and when it was mixed, who mixed it, and who administered it for each time he had an infusion. It sounds like accurate information in his case will be critical.
AnonymousJanuary 19, 2007 at 3:59 pm
Thanks for the clarification- I’ve been so tired lately staying up that I got a little spacy. Todd got Gamunex by Talecris the first day, had terrible searing pains and cramping, and developed purpural lesions on his lower legs. The second day, we complained and his neurologist got involved- was angry the substitution had been made. The infusion company then brought down Gammagard by Bayer for the second day (he gets 50gram each day). He did much better with this.
This week has been our best week in a long time- he is so strong he has spent 3 days crawling around in the attic fixing a wiring issue with our lights.
But now, just got a letter from our insurance they don’t want to pay for it anymore. Now what?
AnonymousJanuary 23, 2007 at 9:59 pm
Hi Sigrid and Todd, My son had a problem with Gammar, he now can only use Flebogamma by Grifols 5% 10g for 5 days, he still gets some side effects, like headaches, but they are not as bad anymore. If you have any questions let me know and we can talk.
Wendy and Jeff
AnonymousJanuary 23, 2007 at 10:23 pm
Well, i had my first round of ivig, Flebogamma, by Grifols. my neuro ordered something i had never read or heard about anywhere! it is called the Raskin Protocol. I went in the hospital for 5 days of treatment and everyday he stopped the ivig to do this protocol. A series of injections in the iv of Depacon, Dihydroergotamine (D.H.E. 45), Toradol and Reglan. I got this every day. This along with my oral Topamax he gave me i had no headaches or side effects at all. I did find the info on the web when i got home. i just thought i would pass the info along.
AnonymousFebruary 24, 2007 at 2:31 pm
I have been on IVIG nearly two years now. I have no idea what brand was when first in hospital and got Dx. All I know is that I was able to sit up on my own and was waling again by end of 5 day treatments. Since then we have tried varying cycls of threatment, always with 25gm dosing per day. Currently on 3 days every 21 days. Doing ok with it but have to get them now at hospital rather than home health.
When I was on home health I got Gamma guard and loved it, I was improving with every treatment. towards end of home health I got Gammunex and it was ok but burned my veins up fast. On first day at hospital I got one of them, (can’t remember which one now). Every since then I’ve been getting Carimune and I HATE IT. As I’ve told the nurses and even the pharmicist at hospital, it is like it keeps me from falling back off the deep end but only holding me at the level of function and pain I was at before cycle started. Several other patients in outpaitent room agrees with me.
So, if I’m sick or otherwise not feeling well, it simply keeps the CIDP from getting worse but not helping me improve at all. I did NOT have to take any steroids when on first two but have now been through 3 dose packs of Prednisone since started going to hospital. SO PLEASE, someone get the price (I’m sur that is major factor for hospital) before I explode from all the eating the steroids makes me do. I’ve seen the back of my pantry first time since moved in house, while on those steroids. 😮
Good luck all and best wishes,
AnonymousFebruary 24, 2007 at 5:36 pm
In case you missed this from Brandy’s post on another thread:
Carimune Nf Withdrawal From Market
I have received the following info from Stericycle regarding Carimune NF.
NDC Number: 44206-416-03
Size:3 Gram Vial
Expiration Date: 11-26-2009
It has been recalled because some undistributed lots were found to have glass particles in them.
You can call ZLB Behring at 1-800-504-5434 if you have this lot. They will accept returns
If you have any questions please call them.
Other questions may be answered at 1-888-873-2838
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