I haven’t had any IVIg since April, but every month I had it I’d get rashes and itching that would be worse than the previous month. I was given benedryl, tylenol and solumedrol and these didn’t help. The last month I had it, I was bumpy and itched terribly for weeks:eek:
I assume I was allergic to something. I forgot which one I used (gammaguard or Gammunex), but the nurse told me that they were seeing a lot of reactions to that one brand vs other brands they used.
Perhaps try a different brand.

Been there – sort of.

about 4 years ago I had some what I thought were slight itch places. The nurse pushed the button. I was soon surrounded by 3 drs. 4 nurses and inhalation therapist. My neuro took me off IVIG and moved to plasmapheresis. When access became a problem research convinced the neuro that using a destrose free globulin (gammunex) and running very slowly at a 50 ml per hour would be ok and we pre-medicated with something thru the infusion site – maybe hydrocotisone? – and all is going well with absolutely no side effects nor any reaction. Now after the infusion there are no more bumps and itches, no headaches no weakness no tiredness.

I’m glad I found this post. I was wondering what was going on….
I have been on IVIG for 1.5 years, receiving 5 days of treatment every 4-6 weeks. My dosage has been 40g/400ml, and I have tolerated this with no issues.
Last week I had my 5 day treatment, but they doubled my dosage to 80g/400ml and I too developed the small bumps or rash for the first time. I also had some minor headache issues.
The “rash” was extremely similar to poison ivy, it itched and looked the same. I couldn’t figure out where I would have gotten P.Ivy but your post sure hits the mark with what I have as well. It has not gone away yet, but is slighly better. Mine hit on my forearms and lower legs. I receive IVIG Gamunex (always have) in the forearms thru normal IV sites, I went about 2.5 days in each forearm site.

Did you happen to increase dosage recently ?

[quote=zbrd]I’m glad I found this post. I was wondering what was going on….
I have been on IVIG for 1.5 years, receiving 5 days of treatment every 4-6 weeks. My dosage has been 40g/400ml, and I have tolerated this with no issues.
Last week I had my 5 day treatment, but they doubled my dosage to 80g/400ml and I too developed the small bumps or rash for the first time. I also had some minor headache issues.
The “rash” was extremely similar to poison ivy, it itched and looked the same. I couldn’t figure out where I would have gotten P.Ivy but your post sure hits the mark with what I have as well. It has not gone away yet, but is slighly better. Mine hit on my forearms and lower legs. I receive IVIG Gamunex (always have) in the forearms thru normal IV sites, I went about 2.5 days in each forearm site.

Did you happen to increase dosage recently ?[/quote]

I’ll be the first to admit that I don’t know everything there is to know about IVIg, but I have had my share of infusions and I’m a voracious reader on the subject. So, here’s my take on what happened.

By going from 40gm/400ml to 80gm/400ml, they not only doubled the dosage, they also doubled the concentration. Simply doubling the dosage would have been 80gm/800ml. The solution you were given was a 20% solution. That’s the equivalent of doubling the dosage AND doubling the infusion rate. I’m not surprised that you had a reaction, especially if they didn’t premedicate you with something fairly potent, such as Solumedrol.

Did you ask them why they suddenly switched to such a concentrated solution?

Several things you might try:

As others have already mentioned, changing brands or the speed of infusion might help.

Also (and this goes for anyone, whether they’re having problems or not), stay well hydrated. Drink lots of fluids. Yes, I know it means going to the toilet more (and having to drag the pole and bottle — been there, done that, going to do it again in a fortnight), but IVIg can make the blood viscous. So drink up!

You might try taking an antihistamine before each day’s infusion. I tend to get itchy and feverish when I’m on Ig. Benadryl or Piriton normally sort that out.

And keep fighting. 😀

Deb
London

My mistake, they also doubled my concentration to 800mg, so I was getting 80/800, the bag was giant to keep me on the 5% concentration. I went to the 5% concentration after the first few treatments gave me such a headache. I joked with the nurses that my IV bag weighed more than my dog.

They did increase my rate to a max of 500ml/hr or it would have taken 7 hours to infuse. Previously I maxed out at 275ml/hr.

You should contact the neurologist that ordered the IVIG and advise him of the rash.

You probably should not put anything on the rash unless the Dr. approves….

Hi.
I got a rash 7 days after finishing my IVIG.It started in sploches on my body and saw my DR he changed a medication I was on and in about 7 days it started to leave. I did itch for over 2 weeks and saw a dertimoligst. He have me some salve to use and this stopped it in about 10 days. My hands started to peel and it took over a month for them to heal and stop itching. I feel it came from my IVIG.

Dawn,

Whenever I had IVIG, each time except for, strangely…the last time….I got a rash. It started on my neck and chest…usually several spots…and it would spread to my face and arms. It was always red spots like a pimple without the white head and some were small and some were big. It itched about half of the time. I tried everything from acne cream to benedryl gel to scabies medication. The second rash I got I had an idiot dr tell me I had scabies and I ended up disinfecting all of my bedding, etc and worried for days that my family was going to get it. 😡 It was NOT scabies and looked nothing like it. That dr was a piece of work. No longer going to him.

It bothered me most b/c it didnt look very good. It took two to three weeks to go away and would appear about 4 to 7 days after the IVIG. The neuro told me the first two times it was not related but when I kept getting it after the infusions, he finally said that’s was likely the cause.

Sorry Kevie has to have the rash. Not fun in the heat of summer.

good luck.

Stacey

You should get him into his dr ASAP. Let the dr SEE the rash. WHY did he continue to get the infusion if he had a fever? If his fever goes over 100.5 it should be stopped. Is the nurse staying with you the whole time now or is she still leaving?

If you seriously think that he has aseptic meningitis then he really needs to see his dr. If it is meningitis and not just the usual reaction then it’s VERY important for his dr to know about.

Are you continuing to give him the Benadryl?

Good luck & let us know what the dr says.
Kelly

Hi Dawn, sorry to hear Kevie has more reactions. Might ask for different brand of ivig next time. since you changed from one type of gamma to the other type of gamma and got a little relief, just think if you changed to another brand, what changes might happen-hopefully for the better-like no reaction. Please give Kevie a Big Hug for me.:)