Infliximab

[nikki]

infliximab

A hi to all those other suffering crohnies out there!!
im after abit of advice and support from others that have had Biological therapy in the form of Infliximab. I have jst been informed by the hospital that as no other tablets have worked they are going to try this therapy on me. Ive heard lots of amazing success stories from this treatment but some not so amazing stories also!!
Ive been living with crohns since 2008, and am currently on 100mg of azathioprine and 20mg of prednisolone with B12 injections every 3 months. i have had flares for the past year or so, everyday atm is a constant struggle!! I find the fatigue the hardest part, juggling work and a social life when im so tiered is a battle. I wake in the morning, sometimes after 11 hours sleep and feel i havnt slept, drag myself to work and by 1-2 in the afternoon im ready for a sleep again!!
is anyone else on this infliximab and aware of the side effects etc, or suffer from fatigue like i do?

 

[Artificial]

Hi Nikki, welcome

I haven't tried Infliximab yet (was meant to start this month but doc has decided surgery instead) but just wanted to say I know how you feel with the fatigue!

I currently sleep about 12 to 15 hours a day and have been signed off work recently as its just been getting too much for me, unfortunately at the moment I havent found anything that helps with the tiredness :-( x

 

[nikki]

Hi Rachel, thankyou for the reply

Im sorry you feel so tierd aswell!! its a nightmare, im 23 and feel like an old lady half the time. I can completley relate to having to be signed off work becuase it gets to much, ill be driving to work sometimes crying because im so drained and have no idea how ill get through the day. ive tried excercise, vitamins, drinking lots of water, protein shakes but nothing works

Do you knw why they chose the surgery over Infliximab for you? i hope the surgery goes well so you can feel normal again and get back to work

 

[Artificial]

snap! I'm 23 to! I'm just not really sure about the tiredness thing, according to all my blood tests I'm not low on anything so I'm not sure whats causing it.

They have decided on surgery as I currently have a narrowing and can only manage liquid foods otherwise I get sick....could go someway to explaining my tiredness I guess!
unfortunately no date set yet for it (slow NHS) so I have to go back to work this week which is a bit rubbish!

Do you know when you start the inflixab? x

 

[chrisnsteph1022]

I've had one infusion and it's done wonders for me already. My next infusion is Friday. I haven't had any side effects yet, but it's only been 10 days. I'm also on 100mg azathioprine. And Lialda.

 

[nikki]

Yes rachel tht maybe why your feeling tierd aswell, I'm exactly like you my blood tests show I'm not Low on anything either! Although my blood tests have also showed my White blood cell count normal in the middle of a severe flare!!! I'm due to the hospital on the 13th where I'll find out more of dates wen it will start Goodluck going bk to work, jst remember to take it easy!!


Chrisnsteph: hi and thankyou for your reply! It's good to hear frm someone that is going through it right now. Did you have the severe fatigue before the infusions started and if so did it improve after the first one? And I've heard frm others tht the first infusion can make you rather tierd and sleepy, did you experience this at all?

Nikki x

 

[Craig 1983]

Hello nikki, I have had crohens now for 11 years and have been having infusions for the last 5 years and am currently on infusion number 29, like many stories no tablets or medication was helping I was left with no option than inflixamab but all I can say is it is a brilliant drug and one which has really helped stabilise my condition, there is still times when I feel fatigued and weak but on the grand scheme of things I run a normal life and feel I am one of the lucky ones....

I hope I have been of some help and wish you all the best of luck with your health in the future x