Bad Reaction to second round of IVIG

    • Anonymous
      September 20, 2011 at 10:40 pm

      Hi all,

      I posted back in August regarding my reactions to my first IVIG treatment; fever, headache, flu-like symptoms. My Dr. said that I most likely had aseptic meningitis. However, looking deeper at AM, you should also have a stiff neck and some things that I did not. My fever was 102.5, headache was there, and the flu like symptoms. I also learned that if you have this reaction to the first treatment, you will most likely have it with all in the future hopefully with the symptoms getting better. Please over look my spelling, I cannot see. This is a side effect for me as well.

      Because of the side effects from the first treatment, since the benefits from the treatment began to wear off, the Dr. decided to put me in the hosp. again for a second go round last week. I was to get four treatments over four days, instead of the orig. five, and the percent was a tad stronger.

      This time I had a headache that was horrible,, killing me. I had the fever again, and was sick, flu in a bad way. They skipped the third treatment, then gave me three and four on days four and five.

      Since I have been home, I had my last treatment a week ago today, I am itching, and a rash is starting on my back. Also, these wart/mole like skin issues have sprung up. They are hard and flesh colored, and itch as well. So much so that I tear them off, some of them, because of the scratching. I did get a fever again of 100.7 for two days once I got home, but it finally dropped. I had horrible fatigue and malaise with it.

      My CIDP is progressive and not remitting. It appears that I will have to have treatments monthly and the head Dr. of this malady told me that they were considering six treatments a month? I asked him how that worked, three days at a time? Inpatient/ He said perhaps, depended on how I did with this last treatment, which was worse than the first time and the side effects are still coming.

      Another thing that is scary to me is that prior to IVIG, I was vomiting my food, without gagging. It would just come back up, and I also was struggling with colitis approx two times a week. Also, my neck was having a click when I turned to the side, and the pain was unbearable. It was happening quite frequently.

      The above symptoms have abated with IVIG. No vomiting, neck completely stopped the painful click, and I did not have colitis for a month. With this treatment, I was starting to have the neck issue and it was knocked out again.

      As I truly believe the above symptoms are now truly related to CIDP for me, it scares me that the progressio is in my torso area, digestive area. As this is a disease that starts at the extremities and works it’s way in and up, does this not indicate that I have progressed to a place that puts me more at risk? I did have a horrible two day bout of what seemed like colitis the end of last week.

      I do not want to try another treatment, any new thing scares me, but am I developing possible serious side effects from IVIG? Also, my platelets and white blood count has dropped seriously low, as it did the first time.

      Any comments from you guys who may have had similar reactions, do you feel that I am developing an allergy to IVIG, etc.

      Thanks warriors. I hate this disease. Jan:confused:

    • Anonymous
      September 20, 2011 at 11:25 pm

      In October 2008 I was dx with GBS. They started me on as soon as I was checked in! When they started it, I began to have a headach. After three days of an increasing headach, light sensitivity, ect., they stopped. After another spinal tap.. they discovered I had asceptic meningitis. Dr Hoig is a wonderful dr. He called to the University of Minnesota .. he explained the situation. The U of M drs stated he couldnt take a chance of giving me more. So I recieve 3 of 5 treatments.
      I am disabled. I can get arround on my own in the house if I take it easy.
      You have my prayers and posititve thoughts.
      I have alot of respect for those going through treatments .

    • September 21, 2011 at 9:28 pm

      what about plasma exchange for you? Im not real familiar with it, but it seems ivig alters our immune system by adding all these donor antibodies where as plasma exchange alters the immune system by filtering out anti bodies.
      just a suggestion cuz it sure sounds like the ivig is really giving you horrible side effects—sorry you are having to go through all that on top of having this crappy disease 🙁

    • Anonymous
      September 22, 2011 at 9:25 am

      Do you know what brand of IVIG you have been receiving? How many grams per infusion? My daughter had very bad flu like symptoms after getting IVIG in the hospital. Once we switched to home infusions the reactions have basically stopped. We noticed she will have more of a reaction if she gets too many champagne bubbles in the IVIG.

      Are you being pre & post medicated? With what?

      It has been suggested, for women especially, to receive IVIG every other day as opposed to getting it every day for 5 days.

      I have no idea what the wart/moles could be other than suggesting skin tags. If you click on this link you can see a picture: [url][/url]

      It does sound like the CIDP could be affecting your autonomous nervous system. What does your dr have to say about that?

      I don’t have any experience with platelets dropping after IVIG.

      Have you spoken with your dr about trying plasma exchange instead of IVIG? It may end up being a better option for you.


    • Anonymous
      September 22, 2011 at 7:38 pm

      So many of my side effects were due to the nurses giving the IVIG TOO FAST. They were running the pump to 150 an hour and trying to get me in and out in 5 hours no matter that it made me ill.

      I have tried several IVIG brands till found the one the works the best for me. I loved Gamaguard S/D 10% but can’t get it now where I live. Been on Gamunex for 3 months.

      I now have the IV pump at 75 max and the 50 grams infusion take 7 hours (no mixing in drip bag-just hanging bottles). I always take Benadryl and 2 Tylenol before each infusion. For 6 years I have had six infusions a month. Mon/Wed and next Mon-then it was repeated. Recently I decided to try one infusion a week and so far it’s OK–not super but the 2 extra days a month I get is so nice. I am much happier having my treatments at home with a skilled infusion nurse who is willing to go slower with fluids.

      Please ask to see what the pump rates were and what brand. IVIG isn’t for every one but look into trying other brands and pump rates before going on to PP.

    • Anonymous
      September 23, 2011 at 9:58 am

      Limekat, God bless you, that is quite a frequent infusion schedule. I have been receiving infusions every two weeks for the last 1 1/2 years, and it seems like every time I turn around, it is time for another one. I can’t imagine multiple infusions a week. How in the world have your veins held up?

      I receive a total of 80g of Gamunex C. I am lucky that I can tolerate a high infusion rate with minimal side effects, otherwise, it would take forever. I start at 75, and we increase that rate every 1/2 hour until I max out at 400! I pre-medicate with acetominophen.

    • Anonymous
      September 23, 2011 at 8:23 pm

      My 5 year old titanium Chest Port saved what veins I had left. Believe me, I fought getting a port. Hoping to some day to have even less treatments.

      So how long at this high rate do your infusions last??

    • Anonymous
      September 24, 2011 at 6:28 pm

      After 11 months of IVIG—100 Grams Gamunex in 5 hours every 4 weeks, I noticed that others were receiving smaller bags of fluid prior to the Gamunex. I had been plagued with the aching, itching, and migraine headaches after each treatment even though I was given Tylenol and Benadryl prior to each treatment. I was told that the small bags were Reglan (for stomach) and Decadron (type of cortisone to help with symptoms). I asked the Dr. about it and he put me on these two IVs prior to the Gamunex. After the first treatment using this new regimen I thought it was a miracle because I did not have a headache. The next treatment was also okay. However, after the third treatment with the new regimen I was fine the next day, but later that night I woke up having problems breathing, itching all over, and aching all over. I got up and took a benadryl and used my asthma inhaler. When I got up the next morning I was so sick and swollen all over that I went directly to my family doctor. My blood pressure was 180/88 and white cell count was elevated. I got two injections of Lasix (for fluid retention), a pill under my tongue (vasodilator for the BP), and a prescription for antibiotics. I had a horrible weekend—aching all over sometime unbearable pain and also got the migraine. On Monday morning I went back to my local doctor and was given a prescription for muscle relaxant and also Neurotin. I tried the muscle relaxant and it did not do anything, so I tried the Neurotin and it helped stop the pain and itching. I notified my Neuroligist of the reaction to the IVIG and he mentioned possible pre-treating me with Lasix, too.

      I think that I got a bad batch of Gamunex. Have any of you had something like this happen to you???

    • Anonymous
      September 25, 2011 at 12:12 am

      My infusions usually last about four to five hours all told. My veins have been problematic off and on. I have found lately that if I hydrate well and apply a hot water bottle to my hands the sticks are a lot easier. I see my neurologist again in January, and he has talked of taking me off the IVIG cold turkey once I have plateaued.

    • Anonymous
      October 14, 2011 at 5:03 pm

      Ok, I want to say my rate was 100but fr reading that must be wrong so on second thought, it was 50. I made them hold it there. It took over seven hours, I was pretreated with benadryl and a very high dose of tylenol.

      My veins turned hard and sent a red streak up to five inches, they had to change my IV over and over. The wart like growths are too big for tags, the one is half the size of a pencil eraser, I hate it.

      My dr. has said I cannot have anymore treatments. I had three infusions of steroids this week, 1000 mls a day. I think they ran them too fast. We did it in the day hosp. I came home every night. I have never felt more nuts, the last one was yesterday. Thought processes off the chart whacky. No sleep. They used solumed, I think that is correct.

      As for the ivig, I have never had the option of brand choice. I get what they have. And it comes without a brand label. I know that it has been 10% but this time it was stronger, hence four days vs five.

      I cannot say that I feel a been it fr the steroid. My other option was 80 ml for 6 mos. I cannot do that.

    • Anonymous
      October 14, 2011 at 5:05 pm

      Benefit fr it. I hate iPad auto spell!

    • Anonymous
      October 14, 2011 at 10:12 pm

      Steroids are notorious for making you feel bananas, have outbursts and not sleeping. When I was given Solumedriol I felt like I was coming out of my skin. At this point I will not take any predisone.

    • Anonymous
      October 16, 2011 at 1:33 am

      I have been receiving IVIG every ten days 25 gms. On the day after the infusion and 3-4 days afterwards, I feel that my legs are sort of “weak” when I go for walk. I feel that I cannot walk as fast, but I don’t feel any pain. I don’t know how to describe it. Later on, my legs feel better. I read that one of the side effects of IVIG (Privigen) is “asthenia”. Isn’t this side effect counter intuitive from what we should expect from IVIG to help with the CIDP? Does anyone experience this?

    • Anonymous
      October 16, 2011 at 9:14 am

      Exosurf – On occasion Emily has complained of pretty severe leg pain during her infusion. We switched from premedicating with Tylenol to Motrin & that has helped bring the pain down to a more tolerable level. She will have me sit & rub her legs to help with the pain.

      She hasn’t complained of feeling weak after the infusion though. She says it feels soothing & she can feel it rushing through her body. When she had her port she said it felt like bubbles going into her body.

      She usually gets a burst of energy after her infusion but a few times she has been crabby & tired. I can’t decide if it’s from the IVIG or from the Benadryl.