How much do you get?

[s162216]

Hi,

Its recently been decided by my Immunologist to raise my 3 weekly dose of IVIG from 25g of Privigen to 30g to try to combat the increasing tiredness that I've been getting towards the end of the 3 week period (last 5 days usually) which makes concentrating on my University work difficult as all I want to do is sleep (as luck would have it, the dates always fall so that when I'm just about to have/had an infusion the works due in and I usually end up working on it all night before its due as I've not been able to concentrate enough before - still it doesn't seem to cause any deficiency as I got 96% on my last Formal Report [the best in the year!]). So now I cost the NHS ~£150 more every 3 weeks!

Its made me wonder how much others tend to get every time they have an infusion as going on what others in my infusion clinic have, my dose is somewhat small - there again I am fairly light!

Sam

[john]

Hi Sam,
I weigh 75kg and get 55grams of flebogamma every three weeks.
Probably more than the sums would specify but of late my trough level has been falling, so my dose was upped by 10%.
I still get tired though, sad to say!
Your marks are a credit to you, I have to say. I hope your fellow students realise how much more of an effort you are making!!!

[liz2mac]

Hi Sam and John,

The infusion dose per body weight can be found in the literature available elsewhere. However, a very important part of the guidelines for immunoglobulin use does recognise that clinicians should be able to prescribe in line with the patients needs. In other words, hilst some people manage very well on the recommended dose for body weight, some people do not. Its therefore not helpful for patients to compare the amount of immunoglobulin they have as it differs due to nee. HOWEVER, if people are still getting lots of breakthrough infections whilst they are on the recommended dosage for their body weight, I would expect their consultant to consider increasing the ammount of immunoglobulin that they are on.
Liz

[john]

Hi Sam,
I'm sure you knew that your immo would tailor your dose to your needs rather than just your weight, but it's perfectly normal to wonder what other people are getting to get a sort of "handle" on your own case.
When i talk to newbies and even some old hands at the clinic, dosage is a frequently asked question. A very high dose doesn't seem so scary if you know that others get even more, and a low dose somehow makes you feel that you're not as ill as most, I guess!!
Seems funny to hear you say you're pretty light, I always had you down as a massive rugby player!!!
Oh tes, and another thing I always tell folk NOT to worry about is the cost of their treatment. We all know that it's probably the most expensive juice in the world, but hey, we're all worth it!!

[bamber]

Here Here we are worth it!

[glowing]

Ditto!