F**K. .... NO

[twiglett]

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Twiglett - you deserved that doughnut! Blimey, i can't imagine it, I feel upset enough when ds gets another ear infection, you must feel so powerless at times. Sending you a cyber hugxxx

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Twiglett, I'm so sorry, only just seen this. You poor thing, and poor dh. It might be worth him asking about infliximab if he hasn't tried it; it's a drug that can work wonders for some people but which is not readily prescribed because it's so expensive. I'm been on at my mum to ask about it but she never wants "to cause trouble"

Hugs, and if it's any small comfort I've just sent a nice big package off to you.

Yes, they have talked about Infliximab for me (for my Crohn's rather that arthritis but it is all linked). It is an infusion that is apparantly very effective at putting you into remission if you have auto-immune disorder.

They have said that I can now have it if I have another flare-up as I have thinning bones due to being on steroids for 18 months during and after my pregancy, and they don't want to risk putting me on steroids again. However I think you have to either have a very good medical reason to have it (like that) or private healthcare or be very lucky as it does cost a fortune

That's interesting, CD. I know the GI consultant here has been using it for Crohn's with some really good results. I have a feeling they will think my mother's too old to bother with, but she's been on high dose steroids for over two years now with very little effect (in terms of pain) and with pre-existing osteoporosis and glaucoma, both of which have been really exacerbated by the steroids

tamum your poor mum Maybe they would try it as a steroid-sparer? Esp if she has osteoporosis.

You'd think so, wouldn't you- it just hasn't been used much for temporal arteritis, but they're not having much luck tapering the steroids. She is theoretically taking steroid-sparing drugs, but azathioprine made her sick and methotrexate doesn't seem to be doing anything. It's such an intractable area, autoimmunity. Do let me know if you try it, won't you?

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sorry to hear this twiglett (((HUGS)))

Electric toothbrushes are supposed to be much better for getting teeth clean anyway.
Not meaning to sound insentitive -- when my RSI was at its worst I didn't want to brush my teeth either; I found the poor use of my hands very scarey and dismal, but if you don't find a bright side you'll go mad.

Hugs to you both

Tamum shame about the azathioprine - I've been on it for years (incl thorough pregnancy) with no side effects. I know if does make some people suffer.

Will def let you know if I do need/have the infliximab.

twiglett, only just caught up on this. Hugs to you both.

Sorry to hear this Twiglett

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(((HUGS))) twiglett - I'm so sorry you're both going through this.

Twiglett, I am really sorry you are having a rough time. We lost touch when you gratuated from the ttc thread . I miss your wit and shall have to seek you out more often. Chin up.

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how many you got?