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a question for my fellow Gammagard users
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I have been using Gammagard subcu for about 5 months now, following around a year on Hizentra. I seem to be super sensitive to the stuff, but the last three weeks have gotten increasingly weird post infusion. (I feel really embarassed about this because most people seem to tolerate this stuff pretty well, but anyway...)
F.Y.I., I always pre-med with 50 of Benadryl, etc. and take it every 4-6 hours during infusion and the next day. So, three weeks ago: around 16 hours post infusion I broke out in a rash and my throat got itchy. I took more Benadryl then and every 4 hours for the next couple days and it was okay. I spoke with my pharmaist, and we both hoped it was a fluke. two weeks ago: I took Benadryl every four hours until the end of the second day post infusion. At this point I again broke out in a rash, felt my throat was closing up, couldn't speak. This past week: Did the round the clock Benadryl thing for two days, thought I was safe, and then went and had a massive reaction on the third day post infusion. (worst asthma attack I've had as an adult, rash, and now my lungs are junky because the reaction worsened my CHF.) Not exactly a poster woman for subcu at this point, I know. Has anyone else had a similar experience, and if so, what did you do about it? Thanks in advance for the input! I see my pulm tomorrow, and put a call into my immuno, but would really love to hear from anyone who has been there. Posted on 06/24/12, 08:48 pm |
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You could infuse slower (slower tubing) or break it up into 2 infusion days and/or add a steroid. Itchy & closing throat is a pretty significant reaction. Did you have reactions to Hizentra? Maybe switch back if you didn't. Geez what a drag :( its a slippery slope with this infusion stuff let me tell you. I thought I read somewhere Gamunex is also subq now? I use Gammagard and have zero reactions. Just infused 100mls about an hour ago. 
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I should have said that I already have been splitting the dose and going at 30 mls an hour. (all told it takes me approx 15 hrs. weekly to infuse. ) Also, I'm on a daily steroid. (prednisone,)
I'm glad to hear Gamunex may be available Hizentra was not a good drug for me, so that may be the next step. Thanks for the input, Kelli. You are always a sweetheart!
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Have you been tested for anit IgA antibodies?
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Kelli,
No, I haven't been tested for these, but I am going to ask about this for sure. ( As I don't know what they are), I would never have thought of this, so thanks for the input.
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Anti-IgA antibodies can cause severe anaphylactoid reaction in the case of blood transfusion or substitution immunoglobulin therapy in patients with hypogammaglobulinemia. We found a significant amount of anti-IgA antibodies in 10 % of patients with the most common primary hypogammaglobulinemia (selective IgA deficiency and Common variable immunodeficiencies) where the serum IgA level was lower than 0.05 g/l. Knowledge of the presence of antibodies against IgA is important in clinical practice in order to prevent an anaphylactic reaction during the application of a blood transfusion or therapy with immunoglobulin substitution.
Hope that helps :) Considering your reactions, I would def have doc test you? Gammagard SD have the lowest amount of IgA in it and typically the brand used when people have that (or just have horrible reactions). Good luck :)
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