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Leukapheresis

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Ulcerative Colitis
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Posted 3/2/2012 9:47 AM (GMT 0)
Hi People,
I hope your keeping well?! - I have had 3 iinfusions of infliximab (within 7 weeks) and have seen no results unfortunately, although I have been approved for a year im not sure what they are going to do. Personnaly I dont see the point in continuing - Apparently it works for some but possibly not me. :(

I did some research on "what next" - Apart from surgery, although this may be inevitable im trying to avoid it, as im self employed and cant afford a long stretch off work just yet.. I have 2 questions if anyone has an answer?

Has anybody had infliximab work after 3 infusions? - I have read lots of success after the 1st dose, so I konw it can work immediately.. but after the 3rd or 4th, with no BIG improvment after the previous infusions?
2. has anybody heard or tried Leukapheresis?

Im due to see my consultant soon and obviously will be asking the same..

Thanks for reading ...
Posted 3/2/2012 10:52 AM (GMT 0)
justwrong, i am in the same boat. remicade has stopped working for me after 5 infusions. i am so hopeless and desperate to try fecal transplant. nobody i know supports me though so i am trying to find a way to a hospital or clinic so i can get it done there and make payments.
Posted 3/2/2012 2:36 PM (GMT 0)
Hi Joanna,
I feel your pain! - And good luck with FT.. have you heard off/looked into Leukapheresis ?

Thanks
Posted 3/2/2012 3:22 PM (GMT 0)
Hello,

justwrong said...

..has anybody heard or tried Leukapheresis?..



Leukapheresis or leukocytapheresis is a very interesting therapy option for UC.

Here in germany there are some small studies with remarkable results.
For example in one clinical study with 20 participants (with steroid refractory UC, and non-effective azathioprine treatment) 14 of them get in remission after six weeks. (leukocytapheresis once per week)
Also in one case a 8 year old girl could be safed from surgery by using this method.

By myself, I have no personal experience with it, because I get in remission last year with retarded released Phosphatidylcholine treatment during a clinical study with LT-02.
Posted 3/2/2012 10:49 PM (GMT 0)
i have never heard of this treatment before. i jus googled it and it seems really logical. have you found a doctor that would do this?
Posted 3/2/2012 11:56 PM (GMT 0)
I've looked into leukopharesis and it seems most of the studies have been done in Japan with promising results a while ago. I've spoken to our GI about this but she says that studies here have not replicated these results so it's not used. She does not know why they have had different findings. Last year when we lived in Italy, we pursued this type of treatment (highly experimental but offered) and even the GI running the study said really that it wasn't working very well for the kids on it. She said we were welcome to try it but she wasn't hopeful. Considering it meant the day in hospital and a traumatic treatment (my uncle had leukopharesis for an AI kidney disease for years - worked for some but not for him but I knew what it involved) we decided to pass.
Does anyone have any links for recent studies?
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