Synovial Syntax

Treatment history

Posted on: June 17, 2009

Made a start on keeping track of my treatment history


2 Responses to "Treatment history"

Ehrenstein for me, also very good. Have you had this for a while then?

I know chances aren’t great for the rituximab ask. Last consult we were talking about infliximab which is kind of double the cost and less as effective. I turned it down then as I thought I hadn’t given MTX a fair go, as I’d not dealt with my other gut problems. Shame the Nice guidlines haven’t caught up yet. You’ve had 2 infusions? How do you find it?

I get free Rx because I’ve got auto-immune hypothyroiditis. It’s archaic, but it’s one of the lifelong conditions you get free treatment with. Not RA, presumably because when they chose the conditions getting free Rxs, there was no treatment for RA!

I’m not coping very well at all. I can’t process all the stuff in my head as I’ve got such young children to care for, about 80% of my waking hours. There’s a fair amount of pain more often than not, and I struggle with sleep now, especially with our noisy neighbours. I think I oscillate between anger and fear, with ocassional glimpses of acceptance. And you? And are you working? xx

I’m under Professor Isenberg. He’s fantastic. I was under a guy at St Georges and he decided he couldn’t do any more for me. So I did a goggle and found Isenberg.

They may not give you Rituximab until they’ve tried the other stuff and have decided it doesn’t work – how long have you been on these? It costs about £4000 each time they give Rituximab and the first dose is given as an inpatient. But it’s worth asking about it.

Have you got an NHS pre-payment card? I buy it for £100 and it covers all prescriptions for the year which works out very well.

The joys of an autoimmune disease – welcome to a strange world of strange, painful, exhausting symptoms. Living with an invisible chronic illness is sometime so frustrating because you want to yell at the world and tell them how hard it is.
Are you coping?

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