anyone on tysabri? or even heard of it?

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iwishformorehope
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 11/18/2009 2:30 PM (GMT -7)   
I was diagnosed with crohns the summer before 8th grade, now im a senior in high school. So 5 years with crohns... Ive been on prednisone multiple times and finally resorted to going on remicade. It made all the difference! I got so much healthier, gained weight, became happy. Now my body makes antibodies against remicade and kills it all before it can help my crohns. Ive progressively gotten worse. Ive lost a lot of weight, have no appetite or energy anymore. My doctor put me on cimzia since it is in the same family as remicade. However, this didnt help at all. Ive been on cimzia for the past 5-6 months and I havent really even reacted to it. Now my GI doctor (a super specialist, one of the best in the country) wants me to go on a new just-approved-by-the-FDA drug called tysabri. I was wondering if any of you have had experience with tysabri and if it has worked on you or anyone you know. Im just really scared right now because I feel like Im running out of options. And surgery is not really an option for me right now, Im 18, want to go to college, and am going to France over spring break. And i would have to have an ostomy surgery or whatever, not just a resection and I really do not want that. :( So any advice would be greatly appreciated. Thanks!

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 11/18/2009 4:35 PM (GMT -7)   
Tysabri is a different type of drug, an anti-integrin. Remicade and Cimzia are anti-TNFa. So, Tysabri may work better. It got some scary press a while ago and got pulled, but is available again. Some patients got PML and died, but I think they had MS.

Easier2Run
Regular Member


Date Joined Nov 2008
Total Posts : 62
   Posted 11/18/2009 4:36 PM (GMT -7)   
I actually have heard of Tysabri. My best friend has MS and is currently on Tysabri to control her relapses. Although the drug has been approved for Crohn's treatment, this drug does have alot of unwanted side effects. Tysabri is a last resort drug because it breaks down the blood brain barrier, which protects your brain from infections. This is most definitely not a good thing, and would make me very hesitant to even go on this drug. Tysabri has been directly linked with the brain infection, PML, which is not cureable and will cause death. This drug has not been studied in patients who have been on it over 2 years, and those patients that have been on it for over 2 years have eventually acquired PML. I would definitely read up on what this drug can do for you and then talk to your doctor.

I was in your position. I stopped responding to the remicade, and my doctor told me that Humira and Czima only had a 25% of working. I ended up with a bowel resection in 2007, and my crohn's came back 6 months later. I am currently on Humira and have responded incredibly well to it. I did study abroad for a semester in Italy before my resection, when my crohn's was very much active. Because their food is all fresh, my crohn's was in heaven and I did not have one problem while I was over there. When I came back it was a different story.
-Heather, 24 yrs. old
____________

- Crohns disease since 1995, officially diagnosed in 2003.

- Bowel resection in Dec. 07, Crohns reoccurred July 08.

- Medications - Entocort 9mg, Humira, Flagyl 250mg, Lexapro 20mg, Wellbutrin SR 150mg


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 11/18/2009 5:22 PM (GMT -7)   
The new anti-integrins, which I think includes ustekinumab (Stelara) and vedolizumab, aren't supposed to cross the blood-brain barrier.

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 11/18/2009 5:25 PM (GMT -7)   
Just to correct:

Tysabri does not "break down" the blood-brain barrier. For some reason, it seems to allow the JC virus (present in up to 86% of the population, but normally dormant) to become active and result in PML. PML is usually fatal, but not always. Very few patients have acquired PML, and certainly not all who have been on it for over two years. The vast majority of those who contracted PML also had concomitant use of other immunomodulators which is why Tysabri is now indicated as a monotherapy.

I do believe that fresh food is incredibly important, I don't particularly blame it for Crohn's. See the current incidence rates for Crohn's (Note that the U.S. and Europe are essentially the same. Other literature puts the U.S in the range of 1-10 per 100,000. Additionally, note the north south gradient of Crohn's which I've mentioned previously in other threads. Interesting.):

United States
The prevalence of Crohn disease is approximately 7 cases per 100,000 population.1 The incidence and the prevalence of Crohn disease (especially the colonic subset) seem to have steadily increased over the last 5 decades, mainly in northern climates.

International
Incidence rates in Europe range from 0.7 to 9.8 cases per 100,000 persons. Rates in Asia range from 0.5 to 4.2 per 100,000. The lowest recorded rates of new cases appear to be in South Africa (0.3-2.6 per 100,000) and Latin America (0-0.03 per 100,000) respectively.1,2
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/4/2009 8:23 PM (GMT -7)   
I am going into the Vedolizumab trial this month. Actually called MLN0002 study. Similiar but targets gut specific. Tysabri is a little scary... do not like that version of it, but this one seems most promising.

May want to look and see if there's a study around you could get into. Find all locations here: http://clinicaltrials.gov/ct2/results?term=mln0002
Proctitis DX 1999, Pancolitis DX 2008
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 12/4/2009 11:05 PM (GMT -7)   
I wanted to do the vedolizumab trial, but I've had a positive PPD in the past. (latent TB) I was treated for a year with INH but I am still ineligible for most clinical trials these days. Stinks!

Have you discussed trying a different TNF med? I would personally go that route before using Tysabri. I was on Tysabri for 6 months and it did not work for me. I quit due to the risks with little benefit (for me). Tysabri is indeed a last resort med. Some prefer surgery to it. I felt it worth trying, and if it worked, worth the risk. However, I had tried Humira and Cimzia had not yet been approved when I went on Tysabri. Now I am on Cimzia. It seems to do something, but nothing close to remission...

Good luck...
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 12/5/2009 2:39 PM (GMT -7)   
If you haven't tried Humira yet, it might be the best way to go...give it a short before surgery. Surgery is not a cure and it has a high relapse rate, but I know of one person from my college days has been CD free for more than 15 years after surgery.

iwishformorehope
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 12/6/2009 1:54 PM (GMT -7)   
great... :( im going for my first treatment on friday...i really hope you all are wrong and that it works because TNF meds really dont do anything for me anymore and my doctor has high hopes that tysabri will. I dont really want to do drug trials, i feel like a lab rat. And surgery is definitely not an option for me right now. Please pray for me that tysabri will work, my positivity about this has been growing but now its kind of been diminished from all of your posts...but i know you all are just trying to help me out and show other options, so thanks for the input. :)
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