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Hi, Im new

This is my first post so please bare with me!

I have suffered with crohns now for 22 years on and off. These last few years have been quite bad. I was on a cocktail of tablets,which most of you are. The tablets stopped working and I was put on influximab. I have been on this for a couple of years and it has worked well. I was initially on it evey eight weeks and it was great. Unfortunately they then moved me to every twelve weeks and it's not going so well. I start to have symptoms again about week 9 now and suffer until I get my next infusion. Along side this I have also lost 5 stone by eating more healthy but this seems to be aggregate it more. I'm seeing the consultant tomorrow as they wanted to discuss trying me on the tablets again. Although I have been poorly I have worked full time and look after my animals and I am so worried about having trouble leaving the house again. Not sure what answers I'm after, just having a moan really! But any ideas or similar experiences welcome x
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I was wondering whether your doc would consider putting you back on 8 weekly infusions? Do you know which tablets they plan to discuss with you? What type of foods have you been eating? I know from reading here that salade foods like lettuce and tomato's can aggrivate the tum.....

AB
xx
 
Hi,thanks for your reply. I will get back to you with more info once I have been tomorrow. I eat alot of toms so will have to keep eye on that! Have been having one az a day as recommended but not sure what else. Was on az, asacol and pred so keep assume the same x
 

SarahBear

Moderator
Location
Charleston,
Hi, Nelly! Welcome to the forum!

I'm sorry you're feeling unwell. :( You might want to try a food journal to better understand the foods that upset your stomach - it's so different for each of us.

You also might want to have a look through the treatment section of the forum (http://www.crohnsforum.com/forumdisplay.php?f=16). It might be more beneficial to you to try a new medication rather than one (or a mix) that failed before, or as Angrybird said, try to bump up the infusions.

:hug: Please keep us updated!
 
HI, thanks for both replies.

I went to see the consultant today and was overall quite happy with the outcome. I have a blood test on Wed then an infusion on fri. If bloods ok then I can up dose of aza to 100 mg a day. This should take 6 weeks to kick in, just as the infusion starts to have less affect. Hopefully this will cover the period before the next infusion. Consultant said if any problems get straight back to her and we could try 8 weekly infusion again. Back to see her again in 3 months rather than 6 so quite positive.
 
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