The newer more concentrated Ig products

[john]

hi,
for about the last 5 or 6 infusions i have been having 50g of Ig courtesy of grifols, except that now its a 10% concentration instead of the old 5% that i'd been having for years.
where i never really had any issues with the 5% product, three of my latest infusions have resulted in me being totally wiped out by the end, and also feeling really light-headed and woozy.
we tried slowing the infusion - no benefit, so now i pop a 400mg ibuprofen on my way to the clinic, and another towards the end of the infusion (about 4 hours later), and this has made a difference.
sad really because for ages i was looking forward to the new product, thinking i would be infused more quickly, instead of which it takes even longer!
just goes to show you have to be careful what you wish for!!
any comments?
take care - johnjavascript:add(%22%20;)%22)

[s162216]

You could try asking to switch back to the 5% solution as its still available according to the latest edition of the British National Formulary and Grifols website. The idea is to speed up the infusion not slow it down!

Sam

[john]

hi sam,
we did discuss that but it doesn't seem to be an option for me. i think there is a difference in the buffer which i have to get used to, i was able to infuse very quickly with the old product but only after a long period of getting used to it, so i'm hoping that it will be the same with the new version. my immo thought that another way round might be to add saline to the infusion, because i was possibly getting dehydrated, but that seems counter-intuitive!
she does have a point though, previously i would need to pee at least three times during a session, but nowadays hardly need to go at all!!
as an aside, i tried to add a smiley to my previous post, with the result you see there....any ideas??
take care - john

[mali42]

John, do you drink lots the day before and during etc ?
I have been on the concentrate for a few years now and I did start getting the headaches similar to when I first started infusing but with time they eased off,

[john]

hi malcolm,
i got my infusion today, and i didn't have a reaction this time, although it too THREE stabs to get to the vein, by which time i was feeling, lets say. less than optimistic!!
i also drank a lot more water this morning, still needed onlt one pee, but i now think i'll get the better of this!
also, at my clinic i told everyone there about pia closing and this new forum, and i think we all have to do that to get the site accepted.
thanks for your advice - all good
take care - john

[liz2mac]

Hi John,
I've been thinking about this a lot. I think you're running a low grade infection when you infuse, hence the fact that popping ibruprofen helps, also the advice re drinking has got to be right. I'm constantly thirsty & am drinking upwards of 5 litres a day because of hyperparathyroidism, so hence it doesn't affect me this way.
Yes we MUST MUST MUST let as many people as possible know about this. I'm working on letting all the clinical Immunologists know so that they can inform their patients. Is this alright with you Sam?
Liz.

[s162216]

Hi Liz,

Thats fine with me - I never expected such a good response to this forum! I thought that at the most only 10 or so of the members of the PIA might join up here and to get 33 so far is quite surprising!

Sam