Reaction to IVIg

    • GAT
      March 21, 2011 at 8:23 pm

      I have had 24 very successful treatments over two years. No headaches,No issues and feeling great. With the same product, rate, premeds everything the same I had a reaction today. I received 40 g of Gammaguard and toward the end I broke out in large red wealps all over itching like crazy. The infusion center had to stop the treatment and start pumping benedrile steroild and other stuff. Hated to see them throw away a particial bag of IVIg. They tell me they see runs of it that several react to. I get nerveous thinking of reduced dose,two days or worse change of treatment. Next time I may see if they will slow down the rate lots because the day is shot anyway.

    • Anonymous
      March 21, 2011 at 9:29 pm

      GAT ~ In the twelve years I’ve been on IVIG (max infusion rate 250 mg/hr)) I’ve only had one very minor episode where I felt the ‘hives’ begin. Several years ago the infusion folks let me take my pump stand and wheelchair out to a small patio they use for breaks. It was a warm sunny day and I dozed a bit, woke up and felt the hives coming on. Weird. I went back inside and they stopped. Like you, I to hate to see ‘my juice’ go to waste and ask them to be sure I get every last drop. So, for me it seems the hint of the hives were a result of getting too hot not the dosage rate or a bad batch. I know the feeling of ‘if this doesn’t work, then what?” But only 1 episode in twelve years is not bad ~ even one in 2 years. I hope they find the cause.
      I’m usually freezing during treatments and have to really bundle up with blankets and neck pillow they put in the microwave (love it). The way I see it is if my body temp is 98.6 degrees and they infuse a 65 (at best) liquid, I’ll get freezy cold – that’s logical to me. I’ve not read too much about hives or feeling cold on this site but know it can happen. Because, I’m allergic to aspirin, ibuprofen, and naproxin, (but not acetaminophen) I carry liquid capsules of Benedryl at all times. I have had only a few episodes over the years and when I feel the hives coming bite into two capsules and after a few minutes I’m better. Of course, I don’t take aspirin and those others any more.
      I’m very interested in your experience and hope it doesn’t happen again, but I come to this site to learn from others and share my experiences.

    • Anonymous
      March 21, 2011 at 9:46 pm

      I’ve had two minor occurrences with Gammunex in the last few months. In those cases I got what the nurses called a ‘flash.’

      In appearance I would describe small welts, or red raised areas. But, only a couple of them. In both cases they did not progress. As best I can recall we did stop one infusion for a short time, but in the other case we continued my already very slow infusion rates of 40;80;120;160 for half an hour each and then, continue the rest of the infusion at 200.

      Also, in both cases, it was the same arm (my weakest) and of some importance to me, not one of the antecubital veins. It was a smaller vein in the lower part of my arm.

      I prefer the antecubitals, when available, because they seem to be bigger and I have less discomfort when using them.

      I could speculate that I drank less water on those days. Some days I am a bad boy for water intake.

      How do ‘we’ know my maximum infusion rate? If the rate is too fast I get flushed and my blood pressure goes up.

    • Anonymous
      March 21, 2011 at 10:56 pm

      Take pics of your welts IF you can? Or go and be seen w/them. Docs can’t do much unless the SEE the problem! Happened to me once? and it took two derm. doc visits until it could be SEEN. After that? Prescribed topical steroids of Protopic and Clobetasol for the s/e of Puritis or Urticaria [sp?] My experiences w/neuro docs is that they’ve never heard of this as a s/e! Just say ‘its in the prescribing info!’ and leave it at that.
      See page 3 of the prescribing information.
      url or just web up the brand name of the IVIG and go to the ‘full prescribing information’ tab.
      These itches make poison ivy seem like a walk in the park! Don’t they?
      Good luck!

      PS all said above has merit… Had a bad batch once as well. Not fun? Maybe ask your neuro to change brands? Sometimes that helps. Worth a shot anyhow.

    • Anonymous
      March 22, 2011 at 5:31 pm

      Emily had a reaction to one of her infusions a few months ago. She ended up with absolutely horrendous stomach ache & that’s putting it mildly. It was determined she reacted because her infusion started too quickly.

      One thing to consider is that there may have been something about that particular batch of IVIG that didn’t react well with you. Make sure you ask to not be given the same batch again.

      You can also request a small dose of steroids before the next infusion.

      Good luck,

    • GAT
      March 22, 2011 at 10:21 pm

      My nurse called me today to check on how I was doing. there is nothing better then caring professional that worries about your well being and wants to help. I’m sure their are many folks that will say the same for their infusion nurse. I ask about slowing down the rate but didn’t think was the trouble. She said they would add a steroid along with the benedriel and see how that works. We will see.

Reaction to IVIG….

    • Anonymous
      October 31, 2007 at 2:31 am

      Several weeks ago I recieved two days of IVIG as an outpatient; I was supposed to recieve five days but I became very sick. I did not get sick while recieving the IGIV, but several hours after the second dose I began getting nauseous and my neck, shoulders, and back started hurting so bad that I can’t even think of a way of describing that pain. I also had severe headaches. This lasted through the night, then the next day, until late that night the symptoms started lessening. I felt like I was going to die; or maybe I just wanted to die to get away from being so sick.

      I had recieved IVIG three times before this, but at a different hospital with a different doctor. The only discomfort I felt during those transfusions was a headache and slight nausea; definately not enough to ask to stop the treatment.

      Can you get such terrible responses hours after the IVIG transfusion and not during it? I’m not sure of the dosage, but they did transfuse it rather quickly, within three hours both times. I did not recieve any pre-medication.

      Any help?

      Sheila in WV

    • October 31, 2007 at 7:18 am

      I almost always have a reaction to the IVIg without premeds and it can strike up to 12 or more hours after. I do the benadryl, tylenol {sp} and also do Dexamethasone 4 mg before each treatment. It makes a big difference.

    • Anonymous
      October 31, 2007 at 8:43 am

      Pre med and slow down the rate. A fast infusion could be the cause in itself. Keep tract of the amount, rate, time, symptoms and brand used and compare to the following treatment, make small changes in the rate until you get to a point where you are no longer ill afterwards and keep it that way. You can get all that information from your med records, it all has to be recorded. make sure your dr knows of your symptoms, no matter how long afterwards they start. Take Care.

    • October 31, 2007 at 10:19 am

      I premedicate with Tylenol, Benedryl, and then they give me a little solumedrol at the infusion center. I know when I have the concentrated form, I start at 25/hour, then bump up to 50/hour after the first half hour, and then 100/hr a half an hour after that. The other bag that I get that isn’t concentrated starts at 50, then 100, then 200.

      I have NEVER had a treatment in 3 hours:eek: I think my best time ever was 4.5 hours, LOL!

      The only time I had symptoms like you described was when they gave me a 5 day booster this June. After the 3rd day, I think the same vein was just worn out because as soon as it started, I began experiencing similar symptoms until I passed out.

      I’m really surprised they did not premedicate. I’ve read the dosing instructions on several brands and they all recommend premedicating. I hope your next experience is better!

    • Anonymous
      October 31, 2007 at 9:51 pm

      Actually it can be the result of many issues:
      1-premedication? Talk honestly with your doctor about these issues….Be totally honest about each nasty side-effect. He won’t act unless you tell all.
      2-IG preparation and handling? This is the one area where all the stringent government regulations-well, sort of break down. How is it delivered? Does the home nurse bring it or is it delivered by messenger? Check the chill pak that comes with it and the IG bags as well, if the stuff gets above tepid that is not a good sign…call the ‘pharmacy’ and see when it ‘left’ them and tell them when you got it. Delays in paperwork don’t do YOU any good.
      3-rates administered….this can be a real problem and one that your prescribing doctor has to deal with to monitor all prior rates of dosages. Then it’s up to you to be sure the issue IS addressed? Did you take notes while in the hospital and now at home? I do know that my home infusion group doesn’t allow rates over 220, ever for anyone. I can tolerate a faster rate step process, but if I go over 215 I get the headaches… also I’m on a whopping Benedryl dose so I shouldn’t care right away anyhow? I care, I know, if it’s not right I speak up. It’s fixed.
      4-Brand changes? – this is a possibility and why I asked if you’d kept notes before. In one situation I had found the hospital infusion ‘labels’ had subtly changed from the prescribed brand to ‘Brand X or [B]equivalent[B][/B][/B] In a 6 month period after a severe reaction I found I had received 5 different brands in six months. Well, there are regulations [FDA-and strict ones] about notifying both the prescribing doctor and the patient about ‘substitutions’. This had not been done. For example: Diabetics usually receive saline dissolved IG products, as the sucrose mixtures could cause problems. Opposite, some people with cardiac issues may be more ‘sensitive’ to the saline mixes. ANY/ALL severe reactions should be reported by the facility/company doing the infusing and by your physician…this is usually not done. It is up to you to learn, and know what was put into you and to be alert as to what has happened. Then you can report appropriately.

      First tho? I would talk to your doctor, ask questions about the IG and if a different product was used or if the rate might have been too fast. Then ask about possible premedication possibilities. Ask for past infusion records [the doctor should/must eventually have them] for your own ‘records’ and let these folks know that no shortcuts are allowed.

      I have had infusions of five hours in-office and in the hospital. My infusions last about three hours now, but the trick is getting the rate to speed at the right speed [plus the pre-meds]. I do hate those migraine-like headaches! And the ‘flu-like aspects’! When it is all done right it doesn’t happen.
      Hope this helps..