Allergic to IvIg

Hi jps, Welcome to The Family! I am allergic to IVIG-didn’t recover from my first set of treatments for 2 wks.Had home IV service for the treatment afterwards. Now All the DRs that I have seen since last Oct(this is my 1 year anniversary of my 2nd relapse:rolleyes: ) refuse to treat me with anything. Soo hard to find a Good Dr(other than my PCP:) ) now adays.

Whoa! That sounds like a really awful reaction!

But what really caught my eye was that they wanted to do an infusion in your feet?!! (am I getting this right?) If you get home care, that is SUPER ILLEGAL. I have really shotty veins and nurses have a hard time getting the iv started in me, and once a nurse tried to do one in my feet — and she was fired from the company because it’s very possible to paralyze someone that way.

It’s semi common practice in say, the ER, because those are life and death situations. But no one should ever, EVER, give you an IV in your foot at home. !!!

You do not say what made you sick about the IV IgG and this is important. Some people are truly allergic to it and get hives (itchy painful whelps) and breathing problems such a wheezing or low blood pressure. Most of the time this is because they do not make IgA. 1 in 700 people do not, but only 1 in 20,000 get a bad allergic reaction. If it is a true severe allergic reaction, you may not be able to get IV IgG again and that it not good if you need it or if you cannot tolerate the IgA in plasma for plasmapheresis. Somethings, people can get a special IgG low in IgA or get lots of pretreatments (steroids and benadryl especially).

Most of the time, people have a reaction to the IV IgG that makes them sick but it is not really a “life-threatening” allergic reaction. This reaction is either queasiness and throwing up or headache or body aches or any combination of the above. Often for neurologic diseases, it is because the IV IgG needed to be given much, much slower, be given with “premedications”, or other changes like extra fluids or a differnt brand. Before saying you are “allergic” to the IV IgG, ask if it might be a reaction to how if was given instead. I say this mainly because it is important to have options for treatment if needed and you do not want someone to not give something that might help you if giving it DIFFERENTLY might work.

Take care. With hope for cure of these diseases.

Not sure if one would consider this an allergy. I would, but the doc never said that, but did stop treatment immediately when I developed multiple ulcerations in mouth and nose. Tried different brand, same thing occured and a dangerous drop in blood pressure. Doc said no more IVIG ever.

I do have a drop in BP with PP, 94/56 but that does not seem bothersome to the doc. Not sure how low it went with the IVIG. Must have been pretty low.

Blu

Ouch, the feet, that just sounds incrediably painful.

The thought of an IV in my foot sounds horrible, but I don’t understand how it can cause paralysis. Anyone know?

The IVIG I took made my veins harden from the place where the needle was inserted to the bend of my elbows. I had to take blood thinners. I still lost two of the veins. [B]Has anyone else had this problem?[/B]

I also had severe headaches and nausea.

Hi WithHope, Since I have Severe Allergic reactions (death being one) to over 28 meds, its a pretty sure thing that I’m allergic to IVIG. I can’t pre med because I’m allergic to the pre meds-tylenol and benadryl. I started at the min speed and ramped up very slowly to a max of 150-I had no problems during the 2 12 hour treatments-except for the last 30 mins of the 2nd night-then all you know what broke loose. For my own piece of mind-there is no more IVIG for me even if its a different brand, will probably have the same reaction to all brands. For those who don’t end up with aseptic menigitis reactions to ivig then its ok to try different brands, sometimes it does make a difference on ones body. I personally would rather put up with the relapses then go through the reaction I get from IVIG, relapses for me are much less painful in comparrison. An increase in neurontin and tons of rest and I’m on my way in a short time.
I think the reason ivs aren’t put into the foot is because the f waves can be damaged-Foot waves-these are also found in the arms, they were just discovered first in the feet. those are the nerves that carry the message up to the pns at the spine and back down to the foot. Thats the only thing I can think of. When my son was 3 days old he had to get an iv in his foot-the best place on babes to put one in without too much discomfort. I have been threatened with foot ivs after all my veins blow in my arms-they always choose to put a picc line in instead. Take care.

It’s possible you may just be allergic to the particular brand they used. Each brand uses different compounds and detergents that can affect us each differently. Also, running at a much slower rate will take care of 99 percent of infusing problems like blown veins. You should ask your doctor for a more thorough investigation of what went wrong. My first IVs were nightmares (sick as a dog), but once I figured out I was being infused too fast, I was fine — very little reaction to it these days.

only for IGg? I believe there are two IGg’s IGg1 and IGg2, as well as testing for tolerance of IGm and IGa…the last two should determine what brands you can tolerate if IGm or a are present.

Further, I have found that I much prefer the IVIG in a sucrose solution rather than a saline one. With a saline mix I have had reactions, at times mild, others severe. We are all very particular or peculiar in this respect.

I have had the pre-meds of steroids, Tylenol and Benedryl for various reactions. Sort of a mix/match scenario.

I believe there are a wide variety of pre-meds that can be done IV. Many are widely used for Chemo therapies and result in fewer side effects. It depends on the prescribing physician’s expertise and the infusion nurses’ . Sometimes the nurses know more than the doctors. Good communication between you, the nurses and your doctor are key to finding a good combination.

I’ve had several allergic type reactions to IVIG, including the bad scary headache, hives, and one time anaphylactic shock–that was fun! They just did the drip slower for me.

Medow,

Because there are so, so many nerve in the foot and very little fat/tissue, it is all together too easy to miss the vein should it roll or go through the vein and hit a nerve, thus potentially causing paralysis. The risk of doing it is so great that foot iv’s should only be done in emergancy situations (when you know, living out weighs being a parapalygic). At least, this is how my nurse explained it to me.

Dana