The procedure for first infusions?

[syd]

Hello,

So I had my first ever infusion last week. More or less went ok, except for a bit of dizzyness and a headache.

My question is: when should my next one be?

All the specialists told me that I would go into hospital once a week for the first 3 weeks and then after that, the treatment would be once every 3 weeks, more or less.

But on leaving the hospital last week, they told me to come back in 3 weeks time and didn't seem to know what I was talking about when I told them I should be coming in next week!

When you first started infusing, what was the procedure?

Cheers, Syd x

[mali42]

Hi Syd
I started off with my infusions once a week for 3 weeks, first week I had 10 gms then second week 20 gms and then full dose every 3 weeks but my trough levels were not getting there so they put me on 2 weekly infusions,

I don't think they like to put us on full dose right away for various reasons like getting a reactions and letting our bodies get used to them.

Can you get a message to your immunologist asking whats happening ?

Malcolm

[liz2mac]

Hi Syd,
I'd ring your consultants secretary, explain the difference in advice re next infusion you've been given and ask him/her to liaise with your consultant about what she/he wants for you. Its so long since I had my first infusions that I don't know what is the norm now, however, three weekly infusions were popular about twenty years ago. Most physicians prefer two weekly now as our levels don't seesaw so dramatically. These changes in level are called "trough levels". This is the amount of IgG you have in your system just before you have your next infusion, in other words the lowest level you have in your infusion cycle. When you've seen us talking about our levels, what we actually mean are the trough levels. Now, before we are diagnosed our levels are (surprisingly lol) low. When our levels are low we get ill. Some of us seem to need to have very high trough levels in order to keep well. I think that it would therefore be common sense that you should have more frequent infusions to start with for all the reasons others have mentioned. So, if they continue to state that you only need three weekly infusions at this point, I'd be inclined to ask for an urgent appointment with your Immunolgist to discuss this. Hope this helps,
Liz

[syd]

Thanks, yeah I just emailed my Immunologist and asked him. I'll let you know what he says. But It's good that you've confirmed what I thought.

[syd]

Ok, I still haven't heard anything from the Doc! I'm booked in for my next treatment on Thursday, which will begin the normal full dose.

[syd]

Well I just had my second infusion, full dose! In the end, there was no building up of "trough levels". I just went from the first tester infusion to the full does 3 weeks later.

It went fine as well. In fact the second one was very positive, I had no symptoms at all when I was receiving the treatment. I was worried because I've had a cold all week. I thought I was going to have a bad reaction but I didn't! Although I have woken up today and my nose is running so much and I generally feel totally worn out! But I think that's work and the cold, not sure, we'll see.

[gilliem]

I'm glad the news is good and that you've had a positive experience. Hopefully, the cold won't even last as long as it might otherwise because you've got all those new antibodies fighting for you!
Bet wishes,
Gillie.

[liz2mac]

All good news Syd! Hope it continues that way.