HUVS

[Rofa]

I've posted on this before. However this extract from this years EAACI meeting in Copenhagen might be of interest, although the chances of it helping anyone in the UK (and indeed many other european countries), at least in the short term are remote - unless one is taken on as a research project of course

tinyurl.com/k9bk4zw

[RichardE Volunteer]

Thanks Rofa, this is very interesting. I'll also post it on the FB group.

We do know of one person with very refractory HUVS and if not tried already, it is possible that this treatment might be an option.

Thanks again,

Richard.

[Sarahjh2004]

Hi Rofa, that'll be me I think. I am actually in hospital having the treatment at the moment. It is my 6th stay in and each time I have 5 treatments. Unfortunately it isn't as effective as it once was so I'm off for a stem cell bone marrow transplant in the next few weeks.

I think this treatment is very good and reduces the antibody numbers hugely. The only problem is if your antibodies have a tendancy to increase again quickly afterwards. Mine go into normal levels after treatment but by week 5 over 50 then doubling all the time...highest was 400 or so.

Here in the UK it is used for things like RA with fantstic results. There is also a shortage of machines. ...probably due to a financial reason as both treatment and machines are very expensive.

Good to see your name again. I hope you are doing well. X

[Rofa in reply to Sarahjh2004]

I'm doing very well thank you Sara. My attacks are few and far between and write mild. Reading the extract I was horrified to hear how long I had had the condition and how seriously old I had become

Sad to hear you are still suffering and I really hope the stem cell treatment gives some positive results