Hooray - a meth side effect!

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Ironic! Thank you for climbing out of Jessicar to buy me flowers, they are lovely. Janie: I love the optimism, hang on to that girl, it's a lovely gift. My inflammation levels have been in single figures since I began humira but the pain never went ( it never has really, despite whatever meds have been thrown at it. One adjusts.) Speedy: I'm not going anywhere. This is my home, there are people here who understand, and that's good. (I have posted a truly disrespectful response on your TEDS thread. Sorry, but I hope it makes you laugh.)

    I found a quote from a John Cleese film.

    It's not the despair. Despair I can handle. I can't handle the hope.

    Humira gave the worst kind of hope. Now I'm back on familiar ground. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    That's so true DD

    I'm on enbrel, it's not worked for me. I was promised great things. Now going onto rituximab, again hope is bestowed onto you. I'm only 38 and almost at the end of my tether with it all. Someone said to me a couple of weeks ago, anti-tnf is not the wonder drug it's made out to be. Great, now they tell me! Janie
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It's the old story janie, anti TNFs are miracle workers for some, they do some good for others and have little effect for the rest. One just has to keep trying different ones, but therein lies the problem I face. I've had three cracks at them, and my consultant has admitted that funding for a fourth is unheard of. I'm re-opening MASH, I need your services. Please report for duty tomorrow morning, showered and sober. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
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    DD,
    I don't understand the funding thing - "funding for a fourth," - if they have stopped giving you the ones that don't work - how can it work out any more expensive than you being on the previous one?

    Tomorrow, I'll be there - showered, hairy, wearing TEDS and in my MASH uniform.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Money is finite. These drugs are expensive, and if they don't work then they have wasted their money. I have cost them I don't-know-how-many thousands in failed treatments. Why would they want to waste more? It's understandable. Oral steroids have the best effect - and they're cheap! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
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    DD, Sorry but that argument is a cop out ... if they tried you on a drug and it worked ... now that is when it costs money because they have to keep buying it for you ...

    Have you read the RA news thing ... I know you have PA but some of the drugs are used for either???

    I don't really get the whole meds thing ... steriods/TNFs etc but I find it frustrating - no wonder you feel like that boulder guy ... Syphy-whatsit!

    Big sigh ...

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Pa is RA in another guise, but it has the added bonus of rapid skin renewal (every 3-4 days as opposed to every 29-31 for others) hence the lumpy, peeling, flaking bright red immature skin cells that coat the body in varying degrees. Sexy.

    The drugs are the same, but sulphasalazine has a slightly different role to play in that is supresses the skin reaction, which is, I suspect, why the P bit of my PA doesn't appear that much. When it does it's in awkward places, my scalp, the soles of the my feet and my palms. My uncle (paternal side) in America broke out in it three years ago, at the grand old age of 81. He's now like the Singing Detective and it's costing him a fortune in treatment. Thank God for the NHS!

    Money is finite. Times are tough. The population is aging, arthritis is on the up. People are going to suffer, despite the news from NIHCE today. I have tried everything I think, apart from gold and I can't be ar**d to go down yet another dead end - yes, I know, it might work for me etc etc, and I'm not off the humira yet, I do need to see someone about that, but . . . . oh, what a lovely merry-go-round it all is! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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