Last Drug in the Cupboard!

[DekHog]

Hi, all...

I was diagnosed with Crohn's ten years ago at the age of 40 - it wasn't too bad then; just went to the loo too much really. First big flare up at the age of 45; not good!

I work in the oil industry and have been flown home 'sick' from such far flung places as Yuzhno, Russia; Lima, Peru, and Lagos, Nigeria!! I've now decided to give up the travelling and stay at home in sunny Scotland!

Last big flare was April 2008 (4 weeks in hospital) and although better, it hasn't really settled properly since then. The best two years of my life were after Infliximab with Methotrexate as follow up; fantastic.

They tried Humira last year, but it done nothing for me at all apart from give me burning tongue syndrome, which is disgusting, and apparently (no matter how much I want it) they can't give me Infliximab again... a real pity. Have been on tapering pred since June last year, and now on 4mg, but it's on the way back, all the signs are there!

As my consultant said when he gave me the Humira - "This is the last drug in the cupboard, I'm afraid..." They have tried everything else, but I'm still not up for surgery... at least not until I only have about a week left to live! I'm hanging on to my bowels as long as possible, thank you very much.

My lovely other half is fantastic, and I couldn't imagine not having her around when things are bad... I think things are heading for 'bad' again now though. :eek2:

Rather strangely, I tried to join this forum last year when things were bad, but it was kicked into touch by the moderators!!

Derek

 

[danman]

A belated welcome then Derek.

Shame about the Humira, it has helped a lot of people on here.

I'm not allowed to have Infliximab again either, I had a seizure while getting it.

I hope this place give you lot's of new information.

P.S. I live in sunny Donegal, I feel your pain....!!!!

 

[AmandaC]

Hi Derek.

I'm in the same boat as you. I was diagnosed in May 2008 and have been on mesasal, 6-mp, pred, flagyl and cipro and also have had one lot of surgery. Started Humira about 6 weeks ago and seeing no improvements as yet. My GI is giving me 12 weeks on Humira then he wants me to consider surgery as he said there is not much else to offer in terms of drug treatments, I basically have tried them all.

I feel really scared about surgery as they are talking about removing all of my large bowel and giving me a bag. I really don't want to go down that path but my doc says that antibiotics and pred are not a long term solution. He also said that my inflammation is so bad that I'm at risk of getting perforations and complications if I leave it too long.

My partner is actually really worried about me and wants me to have the surgery but I'm not entirely convinced. I guess if I don't have a choice then it will have to happen but I don't know how long is safe to wait and see what happens?

I'm sorry that you're not responding to the meds but your post made me feel so much better knowing that there are other people out there going through the same stuff as me.

Keep us posted on how you're doing!

Amanda