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Date: 05.05.2010
From: Elizabeth Immins

Subject: Anti TNF Treatment - 2nd Time Lucky

Hi All

After being on Enbrel for 4 weeks I am being taken off it as keep getting allergic reactions which are getting worse each week. Really disappointed as for the first time in 2 years (I am 28) my arthritis was under control and my blood tests were showing I was responding well after the 2nd week - too good to be true in my case....

I have been told to try another anti-tnf either Humira or Infliximab and I was wondering if anyone has experience of these in particular the infliximab as bit worried about the infusion type.

But I have to wait until other one out of system and go through panel again so hoping I don't flare up whilst waiting as said can take up to 8 weeks!

So fed up now as finally found a drug that worked on arthritis but I am allergic to it!! I am still on methotrextae / sulfzaline(?) / diclofenic / steroids but on their own still don't work enough plus consultant wants me off the steroids as been on them 2 years.

Sorry to go on but some people don't seem to get why I am so disappointed as think its just a bit of aching when actually its bloody painful !
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Date: 06.05.2010
From: Verity

Subject: Re: Anti TNF Treatment - 2nd Time Lucky

I can understand your frustrations. After 18 yrs of agony Ive just started etanercept. I had relief after the first injection. The side effects are horrific but at least Im not allergic. Id be so so sad if I couldnt take it. I wonder why you have to go through the scoring process again? If youve qualified for etanercept then it shouldnt make a difference which TNF you use? Stupid NHS. Ive just had my last injection until after ive healed from my op (double hip replacement). All bad arthritis is gonna come back in a week or so and Im dreading it : (

Take care xx
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Date: 06.05.2010
From: maz

Subject: Re: Anti TNF Treatment - 2nd Time Lucky

Hi Elizabeth, i have recently had my 3rd humira jab and have been lucky in that i have had no side effects except a headache, my RA does seem more settled but i dont feel any improvement with the bakers cyst yet, i am at rheummy on tuesday for my 4th jab so will find out my blood test results then and will see if the inflammation has reduced.

I do hope you get on something that will help you soon, it is so wearying coping with constant pain.
big hugs, maz.
xx
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Date: 06.05.2010
From: Liz Immins

Subject: Re: Anti TNF Treatment - 2nd Time Lucky

Thank you it is just a matter now of weighing up pros and cons of each and I was surprised I had to go through scoring again. It seems like everytime I inject something it reacts I have on this, I did on methotrexate even my swine flu jab therefore wondering if the infusion one will be better as going in slowly rather than one big hit - its alittle annoying as well as consultant saying he can't be seen to be recommending one over the other ! x
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Date: 07.05.2010
From: Abbie

Subject: Re: Anti TNF Treatment - 2nd Time Lucky

My Rheumy is just finding out from my neurologist If I can be started on Remicade/Infliximab. Before each infusion they give you anti hystamines and paracetamol. Also first couple of times they keep u under observation for 2hrs after the infusion which itself is given over 2hrs.
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Date: 07.05.2010
From: jill

Subject: Re: Anti TNF Treatment - 2nd Time Lucky

in pain all over, more so in mornings, cant get up, deffo cant walk upstairs, so dont, ,y room is downstairs in 2nd reception room, thankgod, but noticing now, that im sooooooo stiff, my fault tho, shlda taken my enbrel fri gone...anyway GB fault really Innit.....V, going on hols in 3 weeks, long time yet i know, but think it clahes with ya op...;(,,,,,,seeing surgeon bout fusion tomoz,wannna put it off for a while, he may say no, will let ya all know when i do ok xxJj
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Date: 07.05.2010
From: Verity

Subject: Re: Anti TNF Treatment - 2nd Time Lucky

Hey Jill!
Yeh Im going in less than 2 weeks now. Having to start thinking about packing my bags etc coz Im staying at me parents afterwards. Its come round quite fast lol.
Ill give you me mob number on facebook tonight. Gimme yours and I can give ya a txt when im bored stiff in hosp lol

How ya doin? Things still s**t??

xx
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