Inflixamab 2nd time round

[andreagillespieuk]

Hi Guys,

Some of you may know i've had a real struggle on my hands recently due to a flare that wasn't taken seriously by my drs untill i had a scope and it showed severe inflammation.

In 2006 i was put on Inflixamab and it worked really well for me, so well i went into remission and was swiftly taken off the maintainance dose. The following year (although also on 6MP) i had many ups and downs untill i finally had a full on flare. Anyway after the scope the drs agreed to put me back on Inflixamab but they did advise that it may not work due to the body building up antibodies.

So i had my first infusion yesterday i was given steroids and anti histamine and it was infused over 2 hrs. Thankfully i had no adverse reactions.

Anyway i'm waiting to see if it takes effect today is day one and i haven't really noticed much difference....i think i've had less pain but my toilet trips are still explosive. Its early days but i'm going to post every few days to update you on how i'm getting on.

I hope this might be useful to some people

Take care
Andie x

 

[Dukeis]

Posting keep track of your progress. Good Luck!

 

[andreagillespieuk]

Ok so we're now on day 4 since the inflixamab treatment.. Day 1 noticed no difference.. day 2 was awesome moved my bowels only once and it was untraumatic i did feel quite sick all day though and on eating in the evening promptly threw up!...day 3 2 bowel movements with some but not unbearable discomfort....day 4, today, it seems to have regressed again this morning i was straight in the bathroom with a tummy explosion then 10 minutes later i was back again, then again with quite significant pain...my appititie hasn't improved and i've felt quite dreadful all day.

I'm hoping its just a work in progress but i do feel quite nervous that there was some improvement initially and today has been downhill....i would have expected it to progress gradually then taper off towards my next dose so it worries me that i've only really had 2days of peace!!

I've emailed my IBD nursing team to ask what i should be expecting/whats typical and i'm praying for a better day tomorrow x

 

[Dukeis]

I remember things being strange right after the dose when I tried to restart it then it got much better. Are you scheduled for another dose at 2 weeks?

 

[andreagillespieuk]

Thank you for that Dukeis, yes i am due to have another dose in 2 weeks, then 6 weeks then every 8 weeks

 

[Dukeis]

I thought it may have been my body trying to adjust to having the remicade again.

 

[andreagillespieuk]

Hi guys,

Well its been a week and a half since my last treatment and i think i'm feeling rather hopeful
Things have defo improved...i'm in the bathroom probably twice a day fairly solid no blood or mucus....HUGE inmprovement! The nausea has passed i'm getting a few twinges in my right side but nothing like what i have been experiencing.

I'm due back at work on Tuesday feeling pretty nervous about it worried i might get over tired and it was a new job so i've been off sick longer than i've been in post but i know physically i can get from A to B without worrying about getting to the toilet, my work is mainly home visits and i have to get the bus, so unfortunatly work was out of the question previously.

My body does still feel quite wrecked but i feel ready to push a little. I have my 2nd dose on Friday and im going to the docs for my B12 so i'm hoping in a couple of weeks i'll feel on top form again.

I'll keep you all posted.

Andie x

 

[Dukeis]

Just checking in to see how's it going. Hope all is well.

 

[andreagillespieuk]

Hi Dukeis,

Its not too bad, i seem to be averaging out at about 5 toilet trips a day alas they are quite explosive but no pain which is a big bonus. I had my 2nd dose on Friday and again ive been feeling a little sick vomited again this morning. I am however able to leave the house without fear now altho i was nearly sick on the bus the other day!

I think so far i wouldn't say its been a miracle saviour but it has improved things and i'm back at work which i'm very happy about! i'm hoping that with regular doses things will continue to improve and as my body gets used to it im hoping i won't keep getting nauseated

Thanks for checking in

 

[Dukeis]

Glad to hear things seem to be improving. Hopefully it will continue.

 

[andreagillespieuk]

Things still going well....the inflixamab has massively improved my symptoms toilet trips a few times a day with no pain.
I had my 2nd treatment about 2 and a half weeks ago and unfortunatly i have picked up a really bad cold i'm due to have my next treatment in a week and a half so i'm hoping it clears up before then things are going so well i dont want to risk them not doing the infusion x

 

[Dukeis]

That is good to hear that it is working for you. Hopefully you'll kick the cold before the next infusion is do.