confused about my options

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Regular Member

Date Joined Jan 2009
Total Posts : 51
   Posted 3/4/2009 3:52 AM (GMT -7)   
Hi all
Went to see my consultant yesterday to discuss my treatment options as I'm almost at the end of my pred taper.
My recent sigmoidoscopy showed that my colon is clear of disease so my flare up must be back in the small bowel, most likely at the site of my resection.  I had an ultrasound too which didn't show any obvious thickening of the small bowel.  My consultant has ordered an MRI for me as well.
He also ran blood tests and said that if my TGN levels came back low (in previous tests they have been non-existent), he would start me on TPMT to try and get the azathioprine working, but if they come back high then he wants to start me on infliximab.  I'm a bit worried about this as obviously it's a big decision and my doc says it's the last resort in terms of drug treatment.  There are also some issues around NHS funding for biologics in the UK.  But on the other hand my consultant said that surgery is now looking more and more likely and I really don't think I can deal with another resection so soon!
I know no-one can really offer advice as I just have to wait for my blood results (going to see my consultant again in 4 weeks to see how I am once I'm off the pred) but just interested to see if anyone else's disease followed this path and what happened?
Diagnosed with Crohn's disease in Sept 05 aged 24

Resection in Nov 06

Currently taking 125mg azathioprine, 10mg prednisolone (tapering), multivitamin, probiotics and omega 3
Previously taken Entocort, Flagyl, Cipro, Pentasa

Regular Member

Date Joined Mar 2005
Total Posts : 357
   Posted 3/4/2009 9:01 AM (GMT -7)   
Did your doctor suggest a colonoscopy? There's only so much that can be seen without one... There are options before resorting to biologics and/or surgery.. what about 6MP or Imuran? Idk all of your circumstances, but it seems to me that your doc is getting ahead of himself..
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, tapering dose of 40mg Prednisone, Bentil and Percoset as needed... considering Remicade

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 3/4/2009 10:49 AM (GMT -7)   
... and before you let anyone put you on Infliximab, it might be a good idea to check whether the NHS will allow you to have this medicine maintained, or whether they're going to force you to have three infusions only, if and when they deem you need it.

Beware of episodic infusions! I'mab was a miracle drug for me, but because nobody would maintain it after the initial three infusions I built up antibodies and then had a severe reaction by the time "they" allowed me to have more infusions. A gap of more than three or four months becomes quite dangerous, so do make sure they're not going to get you half-better with three infusions and then cut you adrift.

Co-Moderator Crohn's Forum.

Regular Member

Date Joined Feb 2009
Total Posts : 33
   Posted 3/4/2009 10:52 AM (GMT -7)   
Hi Caz81

I started on Infliximab in 2006 and it was a huge success to start with - it then however wore off after 10-12 months. I thought that was the last drug available but then hey ho I changed consultants to a top professor in London and i was put on Adalimumab (Humira). This again worked and I felt fine but after 10-12 months it wore off again. After 2 weeks in hospital after a particularly nasty flare whilst on prednisolone (normally the drug that sorts me out) I have come out on Modulen and this seems to be working so far.

So what I am basically saying is that Infliximab is not the last resort and there are other things to try before surgery. I like you do not fancy any more surgery so keep being persistent with your consultant!
24 year old male from London
Crohns since 2002, Colostomy in 2002 and Small Bowel Resection 2005
Have tried Infliximab (Remicade) and Adalimumab (Humira)
Numerous spells on Prednisolone 40mg, Suspected Abscess in June 2007 - treated with antibiotics
Flare up in Feb 09 resulted in 2 week hospital stay
Now out and on Modulen - no food for ideally 8 weeks ARGH!!!!!
Also on Azathioprine 125mg

Regular Member

Date Joined Jan 2009
Total Posts : 51
   Posted 3/5/2009 1:48 AM (GMT -7)   
Thanks very much for all your replies - it's put my mind at rest a bit. Ivy, I will definitely check on the number of infusions, thanks.
Diagnosed with Crohn's disease in Sept 05 aged 24

Resection in Nov 06

Currently taking 125mg azathioprine, 10mg prednisolone (tapering), multivitamin, probiotics and omega 3
Previously taken Entocort, Flagyl, Cipro, Pentasa

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