Date: 13.06.2009
From: Del
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Subject: bit upset today
felt quite good after the infusion yesterday joints felt much easier but got up today and ache everywhere again god i feel so gutted i thought it had worked maybe im expecting to much i dont know just feel really sad today is that quite normal to feel a slight effect and then it just go back to how it was .also was 6 years yesterday i lost my dad so not a good time im so sorry all u lovely ppl all i seem to do is moan xx :(
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Date: 13.06.2009
From: val h
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Subject: Re: bit upset today
hi u bound to feel bit upset gor fingers crossed 4 u that it kicks in soon and u feel much better here is a hug to keep u going
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Date: 14.06.2009
From: J
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Subject: Re: bit upset today
(((((((((((hugs 4 Della))))))) im so sorry sweetie, I lsot my Mum and dad to cancer, they were my rock, I feel like an orphan as they were everything to me, plus this disease dont help does it...I seem to need my parents more than ever!... Del i dont know about the Infusions, altho might go on that one day,didnt u ask at the hosp when it Kicks in? one of the gals on here knows has infusions...maybe do a New topic on Infusions, and ask, remember also Del, u were at the hosp all day i assume, prob not been able to get around like u wld at home, to be honest, doesnt surprise me tht u ache... I had to take my 11 year old son to the hosp, went gp, and he thought my son has Appendicitis, waited 5 hours up there, sent him home, but he still has pain, so might have to go back yet, but the thing was, becos I had to stay with my son for hours, I began to ache, and severe fatigue set in, when the surgeon came around to check my son over, i was almost asleep LOLOL he prob thought what a crap mum I am ...lol...so I RECKON U NEED TO GIVE YOURSELF (oops caps soz) a few days to recover Jill x
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Date: 14.06.2009
From: christine
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Subject: Re: bit upset today
Hi del sorry it didnt work for you, the same thing happened to me felt great for 24hrs, then just went back to normal, i had 3 lots 1 a wk, crap what a waste of time,have you had kenalog in your bum, i had loads of kenalog before the infusion, most of my joints as well, and they said the infusions didnt work because i got immune to them, but i had one this year and it worked kenalog that is,can you not try for the anti tnf, have you been on mex, sulf,etc,all the standard drugs, you have to fail all the standard drugs before you can get on the anti tnf,sad but true, it all comes down to money, ive had that much steroids i have to take calcium, because the steroid knackers your bones. take care. christine.x
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Date: 15.06.2009
From: Jill
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Subject: Re: bit upset today
Hi Christine, its tru thyey knacker the bones, and its terrible that people have to suffer for eyars(like I did) b4 u even get to Know that such meds exist!! also u get the Anti TNF Meds, u have to pass a score sheet, also my Biologics Nurse knows I have massive all over joint pain, but by the time I went for my check up and pass the score sheet, she cld barely get the number they need, think its 28 points or summat, cant remember, that was becos I wasnt in a flare up, anyway, i did pass, just, They do that becos the meds cost ten grand!, since ive been on Enbrel, its helped less flare ups, but I still cant work, that pisses me off, becos I wld be finacially better off if I cld work,...sorry rambling here... anyway take care ok
Jill
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Date: 15.06.2009
From: Del
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Subject: Re: bit upset today
Hi just back to normal again cant bend one of my fingers at all its so painful just to touch it and bloody foot hurts again as well as my back ache grrr so fed up i know they said i can have another 2 infusions just dissapointed thats all and i know the same happened to you Christine and i am sorry but in a way it makes me feel a bit better knowing its not just me :).Ive had 7 weeks of this pain and its driving me mad. I'm on sulf, and naproxen anti inflam plus pain killers been on the sulf for 3 weeks now so i know they can take a while to kick in just thought the swelling might have gone down a bit more it seems to ease off a bit then swell for england and god i am so tired all the time ive always loved my sleep but i could nod off again about an hour after getting up in the morning does everyone eles feel like this ? x
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Date: 15.06.2009
From: christine
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Subject: Re: bit upset today
Hi del sorry to here your still haveing bad, whats your inflam mark,ive been that bad where i couldnt make a fist, god the pain is terrible,when ive had to be admitted to hospital, and the rhumos doctors do their round, many a time ive wanted to say to them,i know you have studied R,A,and got a good paid job out of it, but if you had the pain for 1 day you may under stand what R,A, suffers go through,i just want to scream and say god the pain is terrible, but i cant, because they are at least on our side, even though they dont know the pain, hope you feel better soon. christine.x
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