ivig alergic reacition

    • Anonymous
      May 5, 2010 at 11:11 pm

      last friday i haad my ivig treatment and had a alergic reaction, ichy hands and feet , ichy head and toung, i broke out in hives, thet had to stop my treatment . i get 850 mg and i only got 600 of it. i always get benadryl and tylonal to perteat but after the reaction they had to give me iv benadryl. i have been getting ivig sincr 3/06 and have never had any reaction to my treatment befor. really freaked me out. it was also the same brand of ivig.

      i was wondering if this has ever happend to any one else?

      thank Diane:confused:

    • May 6, 2010 at 2:55 pm

      Wow. Not fun.

      I have had the same experience. Here is what we have done and it is working well: Switched to a immune globulin that contains no dextrose/sugar, Gammunex and slowed way down on infusion rate to 50 ml per hour and added the pre med by IV.

      It is all working well.

    • Anonymous
      May 6, 2010 at 8:37 pm

      Believe me, it can and does make a difference.

      Beyond that tho, I too got a reaction of hives and got my dermatologist to actually SEE it while it was full force. That makes all the difference truly. The next IG infusion you are scheduled for? Try and make the Derm for the day or two after the infusion…when you are in ‘full itch’! They can’t treat ‘it’ if they can’t see ‘it’! Usually w/topical steroids and it IS common? Even tho Neuros’ always go…’never heard of it!’ Report the brand and the reaction to the FDA and leave it at that… sometimes,,, some infusion facilities or home services substitute the PRESCRIBED brand for another-which should be cleared thru the prescribing doc/neuro? But mostly is not! Keep all receipts pertaining to the reaction and call the FDA… And also ask your federal congressman or senate rep for guidance as to the FDA regs… Those rules are crucial to you and should any REAL adverse effects happen!
      I’d encountered a situation w/an area infusion service in a local hospital where they substituted the prescribed IG for 5 other cheaper brands over a 5 month period! I thot I was going crazy that things weren’t working? They weren’t working because I wasn’t getting what could/would work! AND the hospital was billing and getting paid for the richer stuff! THey, by law must notify my prescribing doc and more w/in 10 days and on down the road.. NOT. Just billed for the gold and substituted copper, essentially. Difference in PRICE for sure!
      Substitution of brands is one of the issues that scares me more than many others? Because lesser IG’s don’t work for me? I’d almost given up getting IG until I’d asked key questions about the brands and all!

      As for the ITCH? Get thee to a derm and get thee the topicals! THEY make a huge diff.. They can and do help heaps! IF you’ve got the right IG product to boot? To be suspicious of IG substitutions is, to me, normal? I mean there are big BUCKS involved with this stuff. It is Precious Stuff in my book and don’t throw the wrong stuff my way when it’s not prescribed!
      It IS NOT FUN to have severe itching in some places? And w/this all it does happen! Go ask key questions and get some help and relief, and maybe the IG you are supposed to have? Hugs and good things soon for you!

    • May 11, 2010 at 6:45 pm

      I agree with Bill’s suggestion about the dextrose in all IVIG products except Gamunex which uses amino acids as its base. I too had similar reactions to IVIG and now get IV solumedrol, 125 mgs along with the pre-medications you mentioned. This, combined with a slower infusion rate has pretty much eliminated any reactions. I keep in reserve, 10mg prednisone tablets which I can take should I experience any reactions (itching or rash) after the infusion. Have only used this 2-3 times in the past year. Usually take 20mg a day for 2 days, then
      10mg for 2 days and that does the trick.
      I am getting 100 grams every three weeks and neuro has prescribed brand specific, so I only get Gamunex. Good luck with future infusions.

    • Anonymous
      May 12, 2010 at 1:23 am

      [QUOTE=Diane]last friday i haad my ivig treatment and had a alergic reaction, ichy hands and feet , ichy head and toung, i broke out in hives, thet had to stop my treatment . i get 850 mg and i only got 600 of it. i always get benadryl and tylonal to perteat but after the reaction they had to give me iv benadryl. i have been getting ivig sincr 3/06 and have never had any reaction to my treatment befor. really freaked me out. it was also the same brand of ivig.

      i was wondering if this has ever happend to any one else?

      thank Diane:confused:[/QUOTE]

      There is an error somewhere in your dose. 850mg, isn’t even one gram. The doses vary greatly, but one gram isn’t close to a dose.
      Your dose is likely somewhere around 35-75 grams per infusion.

      Maybe you were thinking cc’s in the bag??

    • Anonymous
      May 12, 2010 at 1:24 am

      [QUOTE=Diane]last friday i haad my ivig treatment and had a alergic reaction, ichy hands and feet , ichy head and toung, i broke out in hives, thet had to stop my treatment . i get 850 mg and i only got 600 of it. i always get benadryl and tylonal to perteat but after the reaction they had to give me iv benadryl. i have been getting ivig sincr 3/06 and have never had any reaction to my treatment befor. really freaked me out. it was also the same brand of ivig.

      i was wondering if this has ever happend to any one else?

      thank Diane:confused:[/QUOTE]

      There is an error somewhere in your dose. 850mg, isn’t even one gram. The doses vary greatly, but one gram isn’t close to a dose.
      Your dose is likely somewhere around 35-75 grams per infusion.

      Maybe you were thinking cc’s in the bag??

      Yes, I have had one allergic reaction, same type of symptoms and done fine since then.

    • Anonymous
      May 12, 2010 at 9:56 am

      Yes, this is the second month I have had a reaction, where my body hurts so bad from my neck to my toes, along with headaches. Dec. Jan and Feb I did fine on IVIG. I am on the same dosage and name brand of IVIG. It’s tough. I do take premeds 30 mins before each IVIG. Very upset about this. I see my dr on Friday. Can’t handle steroids. Did that last month after reaction and told my dr to never put me back on them. It was awful. Very discouraged here in The Woodlands, Texas.
      :confused:

    • Anonymous
      May 12, 2010 at 10:18 am

      I ve had many reactions like that over the years. And tried different brands. Body aches,flu symtoms, headaches (migraines) are normal side effects of IVIG. Pre med helps to minimaze them,but I always have them sometimes worse than others.
      The only thing that helps a little is a slower infusion. I start at 15 ml and then go up every 15 min. I cant go faster than 150ml/hr. It takes me almost 5 to 6 hours to take it. and I take 30 grm.(300cc) The dosage is according to your weight,so you need to check that and make sure your doctor is giving you the right dosage.If you go up or down in weight ,dosage needs to be change.
      dont get discourage keep trying until you find the one with less severe side effects. They will always be there at different intensities. I ve been taking IVIG for 14 yrs and always have side effects in one way or another. Is part of taking medicines.

      I hope you feel better soon.

      Rossana

    • Anonymous
      May 12, 2010 at 4:55 pm

      Thanks. It looks like I’m going to be on the IVIG for some time. Appreciate the input.

    • Anonymous
      May 12, 2010 at 6:56 pm

      From my ‘substituting days’?
      The IG label stated ‘Brand name [B]or equivalent[B][/B][/B]’ That was clued me in? I called the patient represenatives’ office and that’s how I got the proof tho didn’t ask for it ‘specifically’? I’d simply asked what the pharmacy had dispensed to me of IVIG on the stated dates. They’d never notified my neuro or me of the substitutions [required by federal law?]- so with info in hand I contacted my state board of licencing..which had a pharmacy category. Then I contacted my insurance co and sent a letter to the hospital…but only after I’d lined up home infusion service in my area.
      I do believe that I am treated w/auspicous caution as a result? The few times I’ve had to go to the hospital since? I am watchfully and superly cared for! They constantly ask me to do ‘surveys’? I reply that I would do a survey IF it was pertinent to my medical issues [all of them] and my care of any one issue IF allowed to put it into context w/the other issues…. I never hear any more. Stupid YES/NO questions don’t mean a thing in terms of quality care! And, they should know that!
      Still…get to an allergist! They can and do help you w/those ITCHES! And it does ITCH BIG-TIME!!! Try and set up your IG appointments and then allergist appt for the day or two afterwards. It’s the best way for the derm to SEE what’s going on! Take pics if you’ve a digital? Place a dime or such near site to give an idea of the sizes too.
      I know I’ve stuck w/IVIG thru all these problems? I KNOW and can FEEL that it helps me! Don’t give up! Just keep checking things out… Hugs and good things!