New here! Had my first IVIg infusion yesterday ---- terrible reaction 1 hour in...

[Jeanie Z]

:)Welcome Just2Dance and Natalie B. This board is like my second family and one that truly understands my posts.

I was so excited to see Gabriella post and did not read the date. She has been in my prayers for ages. Abby's post was several years old too.

Years ago I had IVIG at a chemo center and spent almost the whole day there each time. I don't recall any side effects. It did help at the time. Jeanie :)

[Lazarus]

Hi Just2Dance, and WELCOME!

I'm one of the lucky ones who's never had the kind of grim experience you describe. In fact, I've never had an IVIG infusion.

But I don't think I'd want to risk going through what you went through a second time.

Well,
Your experience is unusual. As you can see from the comments you are getting many people do very well with this product which is a natural, blood product. It is created from pooling blood from a thousand donors. It is quite different in that sense than the interferons and chemos some of us take. So, you may be able to control the reaction and continue with this treatment which can be very beneficial for some and much less dangerous then the other MS drugs we take.

The speed of the infusion is important. Was your infusion started slowly, then ramped up after some time and then ramped up several more times? THat is probably the best way to control side effects. I took massive doses of IVIG for 8 years. It was imperative that I got premeds. Before the infusion started I got a 10 minute infusion of prednisilone and also Benadryl. When my nurse forgot to give me those premeds one time, I had an extreme reaction. They stopped the infusion and gave me the premeds and started the infusion again after a half an hour wait. No problem.

I am surprised they are doing your infusion at home. Everyone I know gets this infusion at an infusion center. Do you know how much you are getting? Usually it is delivered from bottles that have 10g. I got 7 bottles at each session. It took an hour for each bottle. So, every other week I spent a day getting IVIG. My MS was progressing at the time and an MS researcher put me on IVIG. (Timothy Vollmer).

My suggestion is to check out whether you had any premeds and also the speed of the infusion---was it started slowly and then sped up in several stages?....

I wish you luck. IVIG was a miracle for me and it kept me functioning well for 8 years. When it stopped helping I moved on to chemo therapies which have more risk.

Keep us posted.

[SuzE-Q]

I know it is now available for home treatment as a sub-q option for some conditions.

There is always a possibility of an allergic reaction which is why, as Lazarus said, sometimes people are pre-medicated with Benadryl, etc. or another formulation than Privigen is used.

There's also a risk of meningitis (inflammation of the skull linings) if it is infused too quickly, so, as noted earlier, a slow infusion rate is good, also to start any infusion slowly for the first few minutes to ensure there's no allergic reaction occurring since each batch is a unique blend and could potentially trigger a reaction.

[SalpalSally]

Welcome JTD!!!!!!

[Lazarus]

So, I finally realized that this is a very old post that popped up as if it were a new post from a new member. Right?

[stillstANNding]

It looks to me to be an old thread which Natalie acknowledges in her question to Gabriella. Natalie B seems to be a new member.

That's my read.

Welcome Natalie!
ANN

[agate]

It looks to me to be an old thread which Natalie acknowledges in her question to Gabriella. Natalie B seems to be a new member.

That's my read.

Welcome Natalie!
ANN

That's how I read it too, ANN.

And maybe Natalie will decide to stay with us. We haven't bitten anyone yet, and some of us have had MS for so long that we're almost ready for trophies or whatever is given out as a prize for sticking it out.

[Sunshine]

So, I finally realized that this is a very old post that popped up as if it were a new post from a new member. Right?

It's an old thread from an old member. But Natalie is a new member who found the old thread and posted on it.

[Lazarus]

Thanks...I see it now. It is nice that Natalie was able to access an old thread that related to her concern.

[SalpalSally]

Huh!!!!!!!!!!