Headaches after SQIG when sick with a bug

[mothergoose]

I use SQIG Hizentra weekly, I usually have no side effects from it.

twice in the last month I have had the worst headaches of my life and I have had some dosies,

both times I was already sick, once with a sinus/bronchitis, the next with a stomach type flu.

i don't normally get headaches using SQ delivery rather than IV delivery.

both times the headache started 4 days post treatment, was really bad on post day 5, and back to same as post day 4 on day 6.

at first I thought the headache was part of the bug I had, but my Doctor felt that since I don't normally get them that I was probably dehydrated during and after treatment, which he thinks inturn brought on the headaches.

if it had only happened the one time I would think the bug I had caused the headache, but twice.


i guess in the future I will have to try to stay well hydrated when I am ill.

these headaches were bad enough I should have gone to the ER for them, but I was home alone and didn't want to call 911, besides my head hurt so bad I couldn't make myself move enough to make the call and this was after migraine medication and pain medication.

just wondering what thoughts others had about this?

thanks Mothergoose

PS I was off of Hizentra treatments for 2 months in the spring, this happened in Sept. so I had been back on it for about 3 months, maybe 2 1/2, I know it takes time to build up in your system so I assume this is why I have been sick with 4 different bugs theses last few months.

[s162216]

Hi mothergoose, if you're ill then usually you are at much greater risk of side effects during/after having IgG. This is probably because the IgG that you're receiving will immediately react with the infection in question and flag it up to other parts of the immune system so that they can kill it. Some centres have very strict rules on infusing when ill, and some will actually say to avoid it until on antibiotics for a few days.

Was it the same batch of SCIG both times by any chance? Sometimes certain batches will just randomly produce side effects like that (probably because either your body doesn't like one of the antibodies in that batch, or one of the antibodies reacts with something in your body); a few years ago I got a tremendously painful headache (more like somebody was stabbing me in the top left area of my head!) during an IVIG infusion, they stopped the infusion and it subsided quickly, but came back immediately when they re-started. In the end they abandoned the rest of the infusion (I came back a week early next time to compensate), and it later transpired that 6 other people in my infusion clinic who had had that batch had the same side effect.

Keeping hydrated is good, but make sure to not overdo it as it is much easier than you might think to drink too much and develop water toxicity (which throws your salt:water balance right out of line and is life threatening). If you don't feel thirsty then you probably don't need to drink anything or only a minimal amount, the body is remarkably competent at maintaining it's own salt:water balance and will naturally stimulate thirst if you need to drink water.

I hope that you're feeling better after your infusions now,

Sam.

[mothergoose]

Thanks for the reply Sam
It was from the same batch, one time I was on antibiotics, one time not.
I use SQIG Hizentra and get three months worth at a time, I infuse it weekly.
I have a neurogenic bladder (doesn't empty properly) , I have to drink lots of water all the time to keep my bladder flushed out, so less likely to develope infections.
My Dr says since I have drank lg quantities of water for so long that my body has a new normal level of hydration, and that drinking less even a normal amount for other people can cause me to get dehydrated.
One time that I was sick it was with a stomach flu, so I couldn't keep liquids down, the other was a respitory condition and just didn't feel like drinking.
One time I infused one evening and woke up sick the next day, so I didn't know I was getting sick.
Both times the headache occurred a few days after infusing.

I still haven't been able to kick this bug, I am not as sick as I was, but I can tell I still have the bug. I have had this respitory bug for about 6 weeks, I took 14 days of antibiotics, from week 2-4. It is not uncommon for me to have a bug to hang on, then either slowly get better or if I am not carefully getting enough sleep and not tiring myself out, it will flare up again.

I was never told not too infuse if I am sick, I will have to ask my Dr. About that

Thanks again for your thought Mothergoose