Infixamab peoples experiences of returning to it

[andreagillespieuk]

Hi guys,

I'm currently waiting for an appointment to get my inflixamab its been 7 weeks of hospital appointments frustration and tears and today i'm generally feeling low and miserable i'm just so fed up of feeling broken.

Firstly i wanted to ask has anyone been on inflixamab had a break and then gone back to it like me. The dr did warn that a) it may not work at all and b) i may have a reaction. What are peoples experiences of this?

Secondly does anyone have any words of wisdom or any good jokes to cheer me up.

Many thanks
Andie x

 

[shamrock15]

I was always cautioned not to leave infliximab (remicade) as the body produces anitbodies to it. I haven't heard otherwise, but have seen many people saying they have been pulled off after going into remission. Maybe something has changed and I haven't heard...

 

[Dawnmg]

I was once on remicade for 3 years and I was taken off of it due to them thinking I was in remission, apparently I was not in remission and thus started my never ending crohns battle once again. I was then put back on remicade a about 4 months later and it seemed as though it wasn't working at all. I felt horrible. I didn't really have any reaction to it with the exception of when I first started the infusions the nurse flushed my iv and I couldn't breathe and it caused my heart rate to elevate extremely (very scary) so they decided to put my on benadryl before the infusion and I had to take it with in a four to five hour span, ugh. Anyway, after realizing that the remicade was probably not working anymore I was put on Humira and have been on it ever since. I would suggest taking it slow the going back on the remicade and maybe you can ask for benadryl as well that way it will help with a possible reaction to it.
As far as any good jokes, I'm all out. Actually I have never had any to begin with, very sorry. I can tell you this, you are not alone and when you say you're fed and up and broken, I completley understand. I always get to that point once in awhile and just get down. Everybody is different though so I'm not sure what I could say that might help you feel better about it. Good luck with the re-starting of remicade!!

 

[Dukeis]

I was on infliximab for seven years and had to stop it because of histoplasmosis (fungal infection) when the infection cleared they attempted to restart it. The first infusion went great. I was flaring and everything got better quickly, but it was short lived. 4 to 5 weeks after the infusion I was flaring again. They made me wait to the 8 week mark for another infusion. The 2nd infusion was like they never gave me anything and a continued to flare. After that I was started on Humira and it has worked well for me.

 

[andreagillespieuk]

Thank you for sharing your experiences. I was on inflixamab for a few years and it worked really well, when i went into remission the funding was very quickly whipped away and i've now been off it for a year.

In that year i've had nothing but problems and i've spent the last 7 weeks fighting to get back onto some form of biological medicine. I'm just worried that i might have an awful reaction or that it just won't work. nI've already had 6 weeks off work and i'm totally fed up, i actually like my job!! and with me not getting sick pay i'm hitting the poor house i just can't afford (mentally and financially) to be off work any longer

I'm just praying it works

Thanks again
Andie x

 

[Babypink]

Hi guys,

I'm currently waiting for an appointment to get my inflixamab its been 7 weeks of hospital appointments frustration and tears and today i'm generally feeling low and miserable i'm just so fed up of feeling broken.

Firstly i wanted to ask has anyone been on inflixamab had a break and then gone back to it like me. The dr did warn that a) it may not work at all and b) i may have a reaction. What are peoples experiences of this?

Secondly does anyone have any words of wisdom or any good jokes to cheer me up.

Many thanks
Andie x

Hi

I am newly diagnosed with CD and just had my second infusion of infliximab even after the first one what a difference it made. I am also on steroids which the dose is reduced weekly until I am having infusion only

I was extremely poorly to the point of nearly having my bowels removed but the combination of steroids, pain relief and infliximab saved me from surgery. Apparently I will be on this for the foreseeable future followed by an endoscopy ( I think) to see if the CD is in remission. I understand if it is the infusion will be gradually reduced but still monitored. It's all new to me and tbh at times I don't quite understand it

Lethargy is bad, but I focus on the good, I bake a little and cook (still currently off sick). I was given a book about thinking positive and setting goals which I dip in and out of. I get a long soak in the bath daily and moisturise due to dehydration but do supplement it with water (which I hate lol)

I can't wait to start walking my dog again and build up my strength.

Hope my post has given you something to think about, yes it's easy to say think positive, but it does help