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Crohns & MS
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/30/2009 11:44 AM (GMT -7)   
I have read quite a few posts that other have made.  I see all the medications that other are taking for Crohn's but I don't see Tysabri.  I know it's newly approved for Crohn's so I was wondering if anyone has went that route?
 
Thanks,
Katie

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/30/2009 12:03 PM (GMT -7)   
I was on Tysabri for 6 months and there are two others on here who still successfully and happily use it. Another person was waiting on paperwork to begin, last post I read.

Sure seems like a decent med to consider if, as your name indicates, you suffer both MS and Crohn's.

Have you started any paperwork? What about past Crohn's meds? I guess I figure you've failed both some Crohn's meds and MS meds...?
 
Added:  Forgot to say, Tysabri did not really work for me.  I was unable to get off steroids, so I stopped it.  It did work well for the other two on the forum, so hopefully they will see your post and chime in.  They usually do!


--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 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl

Post Edited (sr5599) : 4/30/2009 1:32:06 PM (GMT-6)


Crohns & MS
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/30/2009 12:28 PM (GMT -7)   
You said you WERE on it for 6 months.  Did you stop?
 
I have not started the paperwork for it yet.  I went for a second opinion yesterday at the Cleveland Clinic.  My MS is fine, I have not had any issues with that since 2001 (knock on wood).  It's the Crohn's causing the issue.  My neurologist is the best (unfortunately just diagnosed with Lung Cancer) I have never had a better doctor in my life.  He has been telling me that Tysabri is there if I want because I can get off all other medications for MS and Crohn's and just use the one.  I have been very hesitant because of the PML issue with Tysabri.  But just recently my gastro told me that is pretty much my only option now (since I can't use Remicade or others in that category due to my MS).  I was on Immuran when diagnose in 2003 and had a good response to it.  I went off of it in 2006 to get pregnant (just found out yesterday I didn't need to to do that) and didn't get back on it until last year.  Now it's not working for me.  I am taking Asacol too.  They can't seem to get my diarrhea under control.  It gets better with prednisone but once I get off of prednisone it comes back in a couple weeks. 
 
Wish I could find a good Gastro doc like my Neurologist.
 
Thanks,
Katie

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/30/2009 12:37 PM (GMT -7)   
Looks like I edited my post too late...

I felt a very slight response to Tysabri, but was never able to taper off steroids. Considering Tysabri's risk for PML is increased by use of other immune suppressing meds, I got nervous and stopped. Actually I think that the patient guidelines would not have allowed me to continue past the 6 months if I failed the taper.

Oh, and steroids are acceptable on Tysabri, but the patient is supposed to be able to taper...
--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 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


Linn
Regular Member


Date Joined Jul 2008
Total Posts : 118
   Posted 4/30/2009 8:32 PM (GMT -7)   
Hi--I don't post here very frequently, but I am currently on Tysabri as well. I had a horrific flare last summer (i'm 5-3 and i was down to 90 lbs, on TPN, had to be on dilaudid pretty much 24/7 for the gut pain) when my Humira failed. I was well enough to finally go home after weeks of IV steroids, but once I was home I was taking 60 mg of prednisone and pretty much not able to function. I had to push off medical school to get better on the Tysabri...after the first dose, however, I noticed a HUGE improvement. I was able to taper pretty quickly. I think my first dose was the end of August? And by October I was completely off the steroids, and by Christmas I had my normal, non-moon face back. I did have a relatively minor blip with an anal abscess/fistula...but honestly, if you're considering Tysabri, a fistula is probably not your biggest worry. I'm currently taking Cipro and Flagyl until further notice to counteract that, and its healing quite nicely (don't want to jinx it tho!). Also taking a lactobacillus to keep my flora in tact on the antibiotics, but thats about it. Life, med school exams aside, is pretty good on Tysabri.
24-year old Crohny, dx'd at 16.
Deferred medical school till January 09 because of most recent flare

Currently take:
Tysabri
Pred 60 mg
Nifrex


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 4/30/2009 11:09 PM (GMT -7)   
I've been on Tysabri for 14 months. it has been the _only_ think that works for me. i'm off steroids... i eat mostly what i want (though not all... i still have CD!!!) but i highly recommend it for those who have not been responsive to other drug therapies.

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 5/3/2009 5:38 PM (GMT -7)   
jid said...
I've been on Tysabri for 14 months. it has been the _only_ think that works for me. i'm off steroids... i eat mostly what i want (though not all... i still have CD!!!) but i highly recommend it for those who have not been responsive to other drug therapies.

I have also been on tysabri for 14 months. I have nothing bad to say about it other than it was scary to think of the possible side effects. Nothing I tried before tysabri allowed me to get off steroids until tysabri. If it were not for it I'm not sure what I would do. Good Luck
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