Question re: IVIg

My wonderful niece unfortunately takes after me with the immune problems. Her immunologist now wants her to take IVIg monthly for her low IgG.

I know one is supposed to drink lots of fluids [water, Gatorade and ?] during the infusions - any other suggestions I can pass on to her that may help this go easier on her and maybe keep away the headaches etc??

Thank you so much!

Poor girl! Drinking fluids the day before helps too. Hopefully they will pre-treat her first!

Sandi what do they treat with before the IVIg? Benadryl or what? I just remember years ago someone said to drink lots of fluids during it and I think it was Gatorade.

Melinda, they don't use nearly as much IG for immune deficiencies as they do for ITP so she may well not have any problems. I read a CVID forum and they don't complain of headaches like we do. If she does have problems the subcutaneous route with weekly infusions might be available to her.

They pre treat with Tylenol and Benadryl. That is what my daughter received prior to her infusions. I did not realize that the dose was different with IG deficiencies, we had one you girl (teenager) who used to get IVIG monthly for some immune complex disorder when I was still doing hospital nursing, but it was at least 5 years ago and I don't remember. All I know is that when my daughter had IVIG and had headaches afterwards I thought about her getting it monthly.

It looks like the immunodeficiency dose is 30% to 60% of the ITP dose.'
From RxList.com:

Primary Immunodeficiency Diseases
For patients with primary immunodeficiencies, monthly doses of approximately 300-600 mg/kg infused at 3 to 4 week intervals are commonly used.

Idiopathic Thrombocytopenic Purpura (ITP)
For patients with acute or chronic Idiopathic Thrombocytopenic Purpura, a dose of 1 g/kg is recommended. The need for additional doses can be determined by clinical response and platelet count. Up to three separate doses may be given on alternate days if required.

Thank you so much Sandi, Ann, Terri and Rob - this is my favorite niece [all are favorites, but she is at the top of the list] and between the RA & treatment for that and the constant infections from the CVID my heart breaks for her. I appreciate your responses and will pass them on.

I was glad to see the dose is lower for immune deficiencies than for ITPers.

Thanks again you all!

Melinda, you may recall that when Ellen had IVIG, a day or two later she ended up in the hospital with all the symptoms of full-blown meningitis. It turned out to have been a reaction to the IVIG - aseptic meningitis - but she still ended up in the hospital for four days IV antibiotics until the cultures came back. The severity of her case may have been unusual, but others here have reported terrible headaches, sometimes with delayed onset. It was pretty scary at the time, and it would have been nice to have known ahead of time that this was a possibility, so not to worry if it happens.

Some reactions are not dose dependent. I do not know if this applies to IVIG.

If your niece is working or in school, it is best to schedule IVIG on Fridays to have the weekend to recover if she feels bad afterward.

You are right Rob - side effects aren't necessarily dose dependent. I will tell her about the aseptic meningitis just in case. There have been a number of people here who have gotten that after an IVIg infusion, Ellen had it bad. She schedules her RA treatment [1x a month infusion] for her first of two days off to recover from that, now she'll have to do the same with IVIg.

Thanks for that reminder Rob.

My teenaged daughter also developed aseptic meningitis about a day and a half after her first IVIG infusion. She had been pretreated with tylenol and benadryl, but folks on here advocated continuing the tylenol and benadryl during and for a day after the infusion, plus lots of water before, during, and after. That seemed to help a lot. On her second IVIG treatment, she began to develop a headache as she was being discharged. She received a shot of solumedrol and low doses of decadron tablets to take for a couple days after. No more headache.
Norma

Hi Melinda,
I have had IVIG 3 x now & every time had dreadful headaches. It has been suggested here that the slower the infusion the better & I pleaded with staff to slow down. It took hours & I still got delayed headaches. Maybe a very individual thing.
I hope all goes well for your niece.
mj

My daughter had IVIG twice. The first time it was planned, she was premedicated with Tylenol and Benadryl. She did ok during and immediately after the infusion, however the next evening we were visiting friends and she started with headaches. She gets headaches during car rides sometimes anyway and the combination really affected her. The second time she received IVIG was after a bleeding episode. By that time we knew she had an IgA deficiency so it was a special prep, she had received one high dose steroid and IV hydration. We also knew to not just stop at the pre med Tylenol but add doses to stay ahead of pain and not chase it. And the next day we just stayed home pretty quiet and avoided any known headache triggers (the fact that we were exhausted from the hospital overnight and it was about 2 degrees F and snowing made that easier!). She did much better that time.

I had two days of IVIG and not one sign of a headache. I put it down to the fact that the nurses didn't know what they were doing, did the drip very slowly, and forgot to get each bottle out of the fridge before the last one had finished so I had a break between bottles of a couple of hours while the new bottle warmed up. It meant it all went on well into the night. So I take from that that slow is the ideal, with breaks. I had no pretreatment either. Sadly it didn't do anything for my platelets. I have IgA deficiency too but didn't know it at the time.

Just to say the reason they didn't know what they were doing was because I had shingles so wasn't allowed on the usual day unit for it and was on a ward in a sideroom where they hadn't done IVIG before.

Stumbled on this:

Aseptic meningitis
Aseptic meningitis is a rare adverse effect of IVIG that is dose related and is more common in patients with a history of migraine.⁹⁵ Symptoms typically begin 6 to 48 hours after the infusion.
williams.medicine.wisc.edu/ivig.pdf

So, it is dose-dependant.
I am not so sure about the "rare" statement, although perhaps it is less rare in patients with autoimmune disorders.

It's pretty obvious it's dose dependent if those having it for ITP often complain of headache and those having lower doses for PIDs don't. It's not in doubt.

Thank you everyone - I've passed on every word to my niece. I appreciate your help!