How do you feel leading up to your next infusion?

[Amanda89]

I'm due my 3rd infusion on Friday and had my last one 4 weeks ago tomorrow and I have been sore the past 2 weeks, with the pain getting worse as the days go on. I'm hoping I'll feel better after my infusion on Friday, but does anyone else get this where you start to feel more and more rubbish leading up to the next one? Kind of worries me as after this one, they need to have a meeting to decide whether I qualify to continue with this and if I do I won't receive it again for another 8 weeks! Ahh the joys of Crohns...

 

[nogutsnoglory]

Yeah it's seems many start to have it wear off. Some get infusions every 6 weeks.

 

[rrhood1]

I can definitely tell whe it's time for my next infusion. My back hurts more, I'm tired and some D starts. However the Remicade is working wonderfully so I'm going to keep it going as long as I can.

 

[sickofcrohns]

I get it every 7 weeks and by week 5 after treatment, stuff starts to go noticeably wrong: usually ulcers and rashes and mild arthritis start up, and then the fatigue gets really bad. I usually miss about 1.5-2 weeks of work per 7-week cycle, most of it in the last 2 weeks before treatment.

I would like to reduce the time between doses to 6 weeks, but it's 17% more expensive (per year) to do that, and that poses its own set of problems. . .

 

[macdonald88]

Im the same it's normally round week 5 that the symptoms start increasing although i am not symptom free throughout any of the course of the 8 weeks sometimes I just seem to have a but more energy. I have been on it for the last 2 years and have been getting it every 6 weeks for the past few treatments. I notice I get a lot more tired my bowels start to play up a lot more, my ulcers in my mouth start causing havoc and the pain increases.

 

[rygon]

If it's only your 3rd infusion it will take afew more until its at its proper dosage. I think it was5-8 before I got the full effects.

Saying that I have my bloods done before every infusion to show infliximab levels and antibodies. When I was 8weekly the levels were pretty much at the cut off level and I was starting to feel worse a couple of weeks before. With this info they upped it to every 6weeks

 

[nogutsnoglory]

What tests are they running for Remicade levels and antibodies? I don't think they run these on me just typical blood count and liver panel.

 

[rygon]

I'm not sure of the exact method, but I have heard trough levels being talked about and a quick look at google I'm pretty sure its this one http://www.prometheuslabs.com/Resources/HACA/HACA_Data_Sheet_DX06042.pdf

 

[nogutsnoglory]

Excellent, thanks I will inquire.

 

[Fosterfamily2303]

I get infusions every 6 weeks however arpund week 4 i start with body aches, upper stomach pain and increased loose bms again .

 

[Amanda89]

If it's only your 3rd infusion it will take afew more until its at its proper dosage. I think it was5-8 before I got the full effects.

Hi Rygon, out of interest how long have you been on Infliximab for? I do feel really good after my infusion last week, so I'm still hoping this will push me into remission and the Azathioprine will help maintain it.

 

[rygon]

I've been on it for 2 and a half years Amanda89 I did have it every 8wks but 2wks before the infusion I would start getting symptoms again (my remicade levels were just above the acceptable level) so they brought it forward to 6 weeks and I've been great ever since.

I'm also on Aza and Mezavant XL but can't imagine coming off Infliximab

 

[Fosterfamily2303]

Besides the Remicade i am also on pentasa and imuran.