What happens after going thru all the meds?

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73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 1/20/2009 9:22 PM (GMT -7)   
Has anyone ever got to the point where they've literally been on every med available? If some never worked, then some stopped working, what options does that leave? I'm especially concerned because some of these meds cause antibodies so that they can't be used again. 
 
On a further note, does anyone think that they will develop meds that will truly highly control or even borderline cure this disease?
 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/20/2009 9:46 PM (GMT -7)   

I've tried every drug approved and used to treat Crohn's except Cimzia...  I plan to start that as soon as the prior auth is approved.

What I do is keep my eye on clinical trials and use steroids.

I have no expectations of a cure anytime soon, but I am very hopeful about stem cells as a long term treatment.


--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  Doing well with this so far.  Dx Osteoporosis 10/08 waiting to start Forteo (pending approval)
--single mom to 11-yr-old girl


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/20/2009 10:27 PM (GMT -7)   
Yes, I've been in that situation. A lot of people here have.

Options:
a) live in pain, and sick (and yes, this does happen. I've spent years stranded, sick, housebound and medless)
b) get lucky and get in a drug trial
c) have surgery or
d) (this has happened to me a few times) a new drug suddenly appears on the market, and doctors help you access it.

There might be a few other options I've forgotten, but I think these are the basics.

Ivy.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/20/2009 10:42 PM (GMT -7)   
Oh yes, and:
e) try TPN
f) try naso-gastric feeding
g) try elemental diet
h) try low-residue diet
j) try other diets

In other words, Tom, don't start worrying yet. I think your daughter has months (at least) of options left.
Co-Moderator Crohn's Forum.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/20/2009 11:20 PM (GMT -7)   
I'm doing good with Humira and the SC Diet right now.

I'm allergic to Remicade. Prednisone and Entocort didn't help much the last time I was on them. I could go back to Imuran or 6MP, but they both make me feel like crap and only help a little. I still have Cimzia to fall back on.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/21/2009 1:49 PM (GMT -7)   
I tried every medicine and special diet, but never achieved remission. So, after being sick for 7 years, I had surgery and have been completely healthy ever since. It's a difficult decision to make, but totally worth it when nothing else works.
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 1/21/2009 5:14 PM (GMT -7)   
i was on virtually everything. surgery helps as it removes the bulk of the diseased portion of the bowel, but is in no way a permanent fix and in some cases it does not alleviate symptoms. diet is what got me over the hump. i truly believe that there is something to the maker's diet and the scd for this disease.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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