Gamunex

    • Anonymous
      March 9, 2011 at 7:21 pm

      Hey guys I have not posted for a while but wanted to get some input from the experts. Selah, my 4 year old with cidp, has been getting Gammaguard ivig for about 2 years. She was getting it weekly and then every other week and now every 3 weeks. She has always done really well as far as side effects. Her last 3 txs she has had migraine headaches, back pain and nausea. She has been terrible. Her doc has decided to switch her to Gammunex. What do you guys think? They are also going to slow her rate although she is on a really slow rate already i guess. Thanks guys for any input.

    • Anonymous
      April 24, 2011 at 10:48 am

      I also was on Gammagard. I took it for 5 months in 2008-2009 and quite often starting Fall of 2009 to Jan 2010. On any occasion when I did not hydrate enough, and I mean, a lot, I had headaches for days and days. I always rest (means nap) after an infusion.

      In Jan 2010 I asked to be switched to Gammunex C. Here is the description of what I am on now. “[I]Gamunex-C, Immune Globulin Injection (Human), 10% Caprylate/Chromatography Purified, is indicated for the treatment of primary humoral immunodeficiency disease (PI), idiopathic thrombocytopenic purpura (ITP), and chronic inflammatory demyelinating polyneuropathy (CIDP[/I]”

      So, you might see that they are both 10% liquid solutions. I did not notice any remarkable difference. The similarity is, not enough hydration = headache.

      By enough, I mean at least 6-8 glasses the day before and one glass every hour during. I know, if I don’t have to get up to go pee, I didn’t drink enough.

      Yes, I agree, go slower. From start of my benadryl infusion to last drop of IV flush is 4 hours for my 35g. I start at 40 for 1/2 hour then 80/120/160 (each is 1/2 hour) & 200 max for the rest. Infusing too fast causes me trouble.

      Best of luck.

Gamunex

    • September 26, 2008 at 8:34 pm

      Can anyone explain the difference between Gamunex and other IVIG products being used to treat CIDP? I recently was put on small doses of Gammagard with no results other than a severe rash over entire body. Is any one now using Gamunex that had previously been on another IVIG product? Any better results? I’m back on weekly PP with IV Solumedrol, so trying to research this to see if it may be a better alternative. Scheduled to see my neuro in three weeks and want to be prepared to discuss Gamunex with some degree of knowledge. The Google information is good, but I’ve found that information shared between those of us with CIDP tends to be more precise and to the point. Wishing every one good things. Thanks,
      Fred

    • Anonymous
      September 26, 2008 at 10:01 pm

      [QUOTE=GAVol]Can anyone explain the difference between Gamunex and other IVIG products being used to treat CIDP? I recently was put on small doses of Gammagard with no results other than a severe rash over entire body. Is any one now using Gamunex that had previously been on another IVIG product? Any better results? I’m back on weekly PP with IV Solumedrol, so trying to research this to see if it may be a better alternative. Scheduled to see my neuro in three weeks and want to be prepared to discuss Gamunex with some degree of knowledge. The Google information is good, but I’ve found that information shared between those of us with CIDP tends to be more precise and to the point. Wishing every one good things. Thanks,
      Fred[/QUOTE]

      Fred, I’ve had Carimune, Gammagard, and Gamunex. In my case, there didn’t appear to be any difference between the different brands. When my neurologist increased my dosage to 600 mg/kg, he also began premedicating me with 125 mg. of Solumedrol. The one time the nurse failed to administer the Solumedrol, I broke out in a rash and my lip began to swell, which was quickly corrected by administering the Solumedrol via my IV line.

      I do know that some folks have different degrees of success/reactions to the different brands, but they’re all the same in my case.

    • Anonymous
      September 30, 2008 at 12:01 pm

      I’m 56, have CIDP, and have been on various IVIG products for the over 5 years since I was diagnosed. I find way less side effects with gamunex. The difference between brands, I believe, is the mixture of additives. Reactions to each are as unique as the individual, but in my case (and I take 25 g 2x a week) the advantages of gamunex are several: it doesn’t make me sleepy, as several others have; is more concentrated, hence takes one hour less time per infusion; appears to manage symptoms no better or worse than any others.

      Like antidepressants, or any other pharmaceutical where there’s a choice of brand or formulation, finding what works for each of us is trial-and-error, time-consuming, and, frankly, a big drag… but hopefully coming upon a winning combination will prove it all worth it.

      Hope this helps … Good luck!
      -Susan

    • Anonymous
      September 30, 2008 at 12:26 pm

      I have been getting IVIG for over 5 1/2 years now and have always gotten Gammunex except once. I got Gammagard and I had some reactiosn to it. Chest tightening, light headedness, etc. I think it just depends on the individual, my nurses say that everyone reacts differently to each different brand.

      For those of you on the Solumedrol, how do you handle the side effects. I had it for the first time last week and I still can’t settle down. How long does it take for the anxiety to go away?

    • Anonymous
      September 30, 2008 at 3:14 pm

      [QUOTE=espersen4]I have been getting IVIG for over 5 1/2 years now and have always gotten Gammunex except once. I got Gammagard and I had some reactiosn to it. Chest tightening, light headedness, etc. I think it just depends on the individual, my nurses say that everyone reacts differently to each different brand.

      For those of you on the Solumedrol, how do you handle the side effects. I had it for the first time last week and I still can’t settle down. How long does it take for the anxiety to go away?[/QUOTE]

      Christie, my only side effect from Solumedrol is that it makes me want to eat everything in sight. How do I handle this? Very simply…..I eat everything in sight. 🙂

    • September 30, 2008 at 7:17 pm

      Thanks for the responses. The Gammagard gave me a pretty bad rash, but no other side effects. The solumedrol has little side effects for me other than increased appetite. I do miss a nights sleep on the day of the infussion as my heart rate goes up to 90-100, but that usually passes with in 24-48 hours. I do get a significant energy boost from the solumedrol that lasts any where from 2-5 days which is great. Perhaps my doctor will try the Gamunex to see if I respond to it even though I have not responded to other IVIG treatments.
      My best to all.
      Fred