Bad reactions

[Deleted]

Hi there,
I had my usual infusion day but i got a bad reaction fron it this time, my vision went all weird, i cant really describe it but it panicked me, i was petrified. They gave me some pirazeen and something else and my weird vision cleared away within an hour but the nurses have told me to take it easy for the next couple of days.

Really not feeling so good at the moment, want to curl up in a ball and sleep forever and perhaps not wake up. sighs*

Has anyone else had weird vision whilst being on immunoglobulins?

[mali42]

That happen to me about 4 years ago but it only lasted about 10 min, I had a long weekend away and the day before I infused I didn't drink much with all the travelling so put it down to that, its never happened since.
I hope you feel better soon.
Malcolm

[s162216]

I got a severe migraine a few months ago a few hours after having my infusion and my vision went to everything beyond about 2m being out of focus and me seeing purple dots wherever I looked. Plus my head felt like it was in a vice. Everything had been fine during the infusion, I had kept it at/beneath 60 drops per minute (I get severe headaches if I go over that) and had nothing unusual. When I eventually got back to my flat (god that 25 minute bus ride was bad, light and sound made it much worst) I just had some ibuprofen and paracetamol before collapsing into bed and sleeping for about 12 hours. When I woke up my vision was almost normal (still a bit blurry but that went after a while) and the headache went. I've had some bad headaches since but no migraines like that one.

Sam

[geoff]

I used to get frequent anaphylactic like (in other words not true anaphylactic reactions but reactions of a similar nature) when I was on intramuscular. Since changing to IV this has all stopped. My clinic has since told me that now reactions are almost unheard of though they may have said this in the context of the style of reaction that I used to suffer. I wonder if by any chance you are all on the same product - possibly (but only just possibly) a change of product might help. Even if you are not all on the same product there must be differences between products and a change may still help. Mind you I am no medical expert, and Liz is not around to give more knowledgeable input!
Geoff

[liz2mac]

Hi all, just dipping in to the forum before going in to hospital for a minor op this afternoon. Two things it could be: If you were "brewing" an infection (i.e.) it was there but you had no symptoms to speak of), the antibodies in your infusion may have gone into overdrive and you had what other people with an intact immune system have when they gey an bad infection, flu like symptoms. second thing could be that your infusion went in too quickly for you. As Sam says, some of us have to put it in relatively slowly all of the time, maybe that is the case for you. As Geoff says, it sometimes happens that one particular brand of IViG does not agree with us (maybe it has too much IgA). I would be inclined to put your next dose in very slowly, iof that is ok, then the next time speed it up and so on until you find the speed that's good for you. If this doesn't work and you are still reacting then it may be the time to discuss changing your product with you Dr.
It's horrid when you do react, very scary. Thankfully these days the products are very good and there are not things in them for us to react to so much as in the past. Try not to worry about your next infusion, kit was quite possibly a horrible one off reaction.
Liz

[liz2mac]

Hi Kitykat, have you had another infusion since this one? If so, how did it go?
Liz

[Deleted]

Hi Liz,
Its taken 18 days but finally im better. I had to go and see my doctor as the dizzy spells where getting worse and i kept on falling over and he told me that i had labyrinthitis and he seemed to think that it was caused by the bad batch of immunoglobulins. He gave me some anti-dizzyness tablets and he told me to report it to the nurses when i next go.

I havent had another infusion but I am due to go on monday and i have to admit im terrified, just purley incase i get another reaction like that. My husband says that im being silly, perhaps i am..

Apr 15, 2012 9:28:01 GMT liz2mac said:

Hi Kitykat, have you had another infusion since this one? If so, how did it go?
Liz

[Deleted]

Hi Malcolm,
Its scary thats for sure. Im glad to hear that it hasnt happened since though.
Thankyou

Apr 2, 2012 22:33:11 GMT mali42 said:

That happen to me about 4 years ago but it only lasted about 10 min, I had a long weekend away and the day before I infused I didn't drink much with all the travelling so put it down to that, its never happened since.
I hope you feel better soon.
Malcolm

[mali42]

Hi Kittykat
I'm sure you will be fine and its not surprising you are terrified after your last infusion,

Remember to drink loads the day before and during and the day after your infusion and remind
them before you start your ivig about your last reaction so they can take appropriate measures ie going slow etc.
Malcolm

[liz2mac]

Hi Kittykat,
I'd be REALLY surprised if it was "Bad" immunoglobulin, but, as Mal says, you must tell your specialist Nurse. If you don't infuse at a specialist centre you must ask your Immunology team before you go for your next infusion what they want you to do. The advice the others have given you is very wise. I would also ask for paracetemol just as you are about to start your infusion. You may have read some recent posts by John and I were we have talked about having "reactions" out of the blue. In both of our cases it was because we were really unwell at the time of the infusion. I wonder if you have had labarynthitis, that is a truly horrid thing to have and it may have been totally co-incidental to your having the infusion. Try not to be too anxious, the chances of it happening again are very slim, but DO tell your team. I expect that they will put your infusion in very slowly and monitor you closely.
Let us know how it goes.
Liz

[Deleted]

Hi there, I had my infusion yesterday and im pleased to say that this time i didnt get a reaction, just the usual headache, hot flushes and a pleasent light headedness. They have started to give me hydrocortisone and Piriton in an injection because of how i reacted and they said thay they will be doing this in future as well. The nurse told me that the hayfever tablets that i take arent strong enough and that they would rather give it to me in that form as its more concentrated. Sooo good news yay!

[liz2mac]

Greta news, glad it went well
Liz

[mali42]

Yes great news :-) :-) :-)