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Pirate's Life at 40
New Member

Date Joined Apr 2010
Total Posts : 4
   Posted 4/5/2010 1:06 PM (GMT -6)   
I am 35 and have been living with Crohns for over 18 years, felt things were pretty much under control until the last 3 years and now no meds are working and I have tried them all.  My last choice is Tysabri... kinda scary since a rare side effect is a brain infection that results in death.  So trying to make a decision as to what to do. 

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 4/5/2010 2:17 PM (GMT -6)   
I was on Tysabri for 6 months. I do think it helped but I did not go into remission, so I quit taking it. Now I am on Cimzia (not doing much if anything at all), nightly budesonide suppository, and methotrexate. (I've tried everything out there also - thinking it's the budesonide keeping me out of the hospital) When I saw my symptom journal from while on Tysabri - I was better back then. But, I got afraid as I am a single mom to a 12 year old girl.

The true risk is low, I reminded myself daily. And, to try it out to see if it works (first 3-6 months) the risk is very minimal. I figured it was worth trying it to see if it worked and if so, how well it worked. Once you know that information, it's easier to make the call about whether the benefits out-weigh the risks.

Good luck with your decision.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 4/5/2010 8:06 PM (GMT -6)   
If you were to have surgery to remove the affected parts, how much bowel will you lose? If it is a few cms, perhaps it makes sense to go ahead and cut it out, and go back on some other maintenance med, and just recover from surgery and hope that the surgery induced remission lasts a long time.

If surgery is will take too much bowel, I guess it would make sense to try something else, Tysabri, or try to get into the Vedolizumab trial (which I think doesn't have the risk of PML) or the like. Have you tried combinations of meds? Like remicade with imuran/mtx and pred? You probably have, but some doctors are wary of prescribing them together because of the higher risks of cancer. If you haven't tried that already, I'd suggest that over the Tysabri. What about TPN to give your bowels a break?

I hope you get some relief soon.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

Veteran Member

Date Joined Jan 2003
Total Posts : 6044
   Posted 4/5/2010 10:25 PM (GMT -6)   
welcome aarrrgghhh!

Regular Member

Date Joined Jul 2008
Total Posts : 440
   Posted 4/5/2010 10:32 PM (GMT -6)   
Welcome to Healingwell!
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/6/2010 8:52 AM (GMT -6)   
Just wanted to add my welcome to the others~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 4/6/2010 9:01 AM (GMT -6)   
If you have tried all the medications and want an alternative to starting Tysabri, have you considered giving enteral nutrition a try? It would mean sticking with a special liquid diet for a few weeks to induce remission, and then if you wanted you could use the same liquid formula as a supplement to regular food and beverages to help maintain remission. This is an old treatment for Crohn's and can be as effective as steroids, but doctors in the US don't tend a mention it because they think it's too hard for patients to stick with a liquid diet for a few weeks. In most cases, insurance will cover the cost of the treatment if you're persistent, as it has been proven effective in published, randomized, clinical studies. Good luck with whatever you decide to try.
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