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Date: 06.10.2011
From: Sandy

Subject: steroids??

Hi everyone
I would just like a bit of advice...
I was supposed to be changing my meds from rituximab infusions to etenercept - but my rheumy has now said that he wants to keep me on rituximab - I agree that it works better than any other drug i've tried so far but it makes me really sick and weak..he says that i have a serum reaction to it rather than an allergic reaction (i have no idea what this means!!)anyway,his solution to this is that i take 60mg of preds for 2 weeks before infusion 60mg for the 2 weeks between the next infusion and 30mg after 2nd infusion and then i assume cut down to wean off them (he didn't tell me this though so I'm not sure) also I'm assuming that I will have to have the obligatory steroid infusion beforehand (i forgot to ask) eitherway this seems like an awful lot of steroids just so that my body can tollerate a drug - has anyone else had anything similar - rheumy says it's my decision - but i really dont know what to think - he is not keen on putting me on etenercept as when i had adlimumbab it attacked my nervous system and apparently etenercept works in the same way and he feels this may happen again..i'm so confused and dont know what to do for the best - any advice would be greatly appreciated
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Date: 06.10.2011
From: davina

Subject: Re: steroids??

hi sandy i'm on enbral and i find the injections ok but it doesn't work very well for me and i am to start on rituximab, i'm a little worried about the steroids also, when last year i was put on prednisolone 40mg and decreasing dose i put on over 2 stone in weight and i just got of 1 stone and don't want to put it all back on.

sorry can't really help
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Date: 07.10.2011
From: sandy

Subject: Re: steroids??

Thanks Davina
maybe my rheumy is right - as you say the new drug doesnt work for you -the steroids are a bit of a worry but oh well. The rituximab is good - its just the side effects.I hope that when you go on it,it works well for you
take care sandy x
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Date: 09.10.2011
From: Shiffy

Subject: Re: steroids??

Hi sandy.

while ur experience with Rituximab, did it prevent joint damage?

Thanks
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Date: 09.10.2011
From: davina

Subject: Re: steroids??

hi sandy
everyone is different some find enbral and others quite well and some don't. please don't stay on this just cause my experience.
is being sick and weak normal when on this drug?
x
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Date: 09.10.2011
From: bsk

Subject: Re: steroids??

Hi Sandy, I have to say I couldn't tolerate that level of steroids. Even 15mg makes me manic.
However, you have to do what you have to do.Maybe it is a price worth paying?
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Date: 11.10.2011
From: sandy

Subject: Re: steroids??

Hi everyone
thanks for the input - shiffy - yes it does seem to prevent the damage or at least slow it down - i've got to say that before i started taking it i was struggling really badly i could barely walk,hold a coffee cup etc - it really has made a difference - the only worry
i,ve got is that my body struuggles to accept it and the length of time that it works for is getting less and less and the amount of steroids they want me to take due to my reaction to it
Davina - I dont know if it affects everybody this way - but my rheumy certainly has other people that have reacted the same way as me - but i'm sure there will be plenty of others who are fine with it - i hope when you take it you're one of them and it works brilliantly for you! As bsk says it may be a price worth paying - at least it works !! x
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