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It looks as though the next attempt at finding a drug to avoid (or at least delay) the removal of my innards is probably weeks away, rather than months.

I just got in touch with the research assistant, as I hadn't heard anything for a while. She said they were within a month to start up, I take that to mean within a couple of months, she laughed and said no.

But of course that's a month for them to get the go ahead, then a while before I actually get started on anything. But still, it's not months and months. Just maybe a couple.

The drug on trial is ustekinumab, sold as Stelara. It is presently prescribed for chronic plaque psoriasis.

I assume it's the same as last time - double blind, placebo controlled. After the initial trial, it's open label. Unless it's a bust like last time, in which case they'll presumably just pull the plug.

This will be my third clinical trial. It's probably my last chance for finding an alternative to prednisolone other than surgery - time is passing. I do expect that if it works, the most it will offer is a bit more time.

This is because loss of efficacy is a feature of drugs in this class. I've been through the ones already available for Crohn's Disease and for me(as for many others) they've worked only for a short period. Hence the constant rolling out and testing of different variations, and dosing strategies to delay/avoid resistance.

~~~

I am sitting on the couch waiting for someone to turn up to discuss council services with me. She's late, which is no big deal but is unusual - these folk are usually dead on time. I'm unwashed and still in my PJs. I feel a bit bad about this, but that's just how things are today. Hard to tell whether it helps or hinders my request for help.

You'd be surprised. Looking like shit doesn't help as much as you might think. Sometimes it reduces your 'likeability', sometimes people need to feel kinship with you to want to help and if you stink, they don't. But other times, what with your disabilities being invisible to the naked eye, scrubbing up - if only for the sake of your own self esteem - means they can't see the problem. I speak here as someone who has been on both sides of the relationship.

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( 5 comments — Leave a comment )
rickybuchanan
Jun. 15th, 2012 04:00 am (UTC)
You'd be surprised. Looking like shit doesn't help as much as you might think. Sometimes it reduces your 'likeability', sometimes people need to feel kinship with you to want to help and if you stink, they don't. But other times, what with your disabilities being invisible to the naked eye, scrubbing up - if only for the sake of your own self esteem - means they can't see the problem. I speak here as someone who has been on both sides of the relationship.


Ugh, yes. I haven't been on the other side of it the way you have, but it seems to be a totally random thing whether people will think "she doesn't care enough to look nice, why should I help her?" or "she looks great, she doesn't need our help!" or vice versa ... with no way of knowing ahead of time which "type" a person is :/

Good luck with all.
dragonsally
Jun. 15th, 2012 07:32 am (UTC)
good luck with trial and with council people meet-up
pondhopper
Jun. 15th, 2012 09:59 am (UTC)
Judging people's problems by how they look...that has to be the worst thing to try to figure out when you have a meeting like the one you describe here. I hope it went well.
I hope this trial is THE one that helps.
(no subject) - shehasathree - Jun. 16th, 2012 04:49 am (UTC) - Expand
splodgenoodles
Jun. 16th, 2012 06:07 am (UTC)
I thought I was...don't recall getting the newsletter though. Mind you, I do tend to put htings like that aside for later.

*puzzles*


Good feelings or bad?
( 5 comments — Leave a comment )

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