Iv Immunoglobulin

Hi

I went to see my consultant yesterday and he said that he wants to start me on Iv immunoglobulins in the New Year to try and keep me off of pred as much as possible. Has anybody else had this? Has it helped?

Thanks

Sarah

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Hello,

Yes I've been on this for about three years, although recently I've had to move to sub-cut as my veins aren't up to it anymore. It makes a huge difference to me, although I also have a primary immunodeficiency so that infusions are correcting a lack of antibodies that otherwise left me very susceptible to infections and the asthma exacerbations that always followed.

I received an IV infusion once every three weeks. It took about four hours once you've included all the faffing, and I found that it left me feeling a little like I had flu - headachy, tired and achy - so I tended to try and have a sleep once I got home. However, by the next day the feeling was usually gone and the good effects were starting to kick in.

I'm sure you've had it explained to you, but there are significant risks with the treatment. Because it is a blood product, in theory it could carry vCJD, hepatitis or any other unknown diseases that they cannot yet check for. Obviously they minimise the risks as much as possible, but they cannot be eliminated, and as you'll be receiving product from nearly 1000 people each time, the risk is clearly higher than for something like a straight-forward blood transfusion. The immunoglobulin all comes from America to try and reduce the chance of it carrying vCJD (which they can't test for), and they take very careful records so that if one of the donors is later discovered to have been carrying something nasty they can track it back to you.

You'll find a lot of helpful advice and information on the Primary Immunodeficiency Association messageboard: pia.org.uk/forum99849144/li...

Hope that helps, and that the treatment helps you as much as it has helped me.

xx

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hi,

i have been having iv immunoglobulins for just over 1 year, i have a deficiancy, and was getting loads of infections, my astma is now better controlled and less infections, i generally feel better.. i have them once a month as an inpatient at st thomas'

i would say if the docs suggest it give it ago, you may feel much better, you will need to give it 6 months to try,

good luck

george xx