Tsabri
Sun, August 03, 2008 12:37 PM
My name is Kimberley and I have had severe crohns dx since 1989. So far my dx has been resistant to all the other treatments offered to me. I stay on a special eating plan to decrease some of my pain, but some days are better than others. I have been unable to work for 6 yrs now, but has of course been denied any benefits. I am actually scared to death about that I dont even know where to start. Anyway my gi now would like for me to try this new drug tsabri I have been looking it up and am aware of the side effects. I wanted to know has anyone else tried it and if so what was your experience with it. Of course this is only if you feel comfortable sharing this information. I know when one door closes another opens, so I feel so positive that all will be just as it should.
Thank you, be well
Kimberley
Joined Aug 3, 2008
Sat, September 27, 2008 12:00 AM
Reply posted for norakoz.
tysabri isn't actually scary since i have been on it for 3months and achieved remission after the first infusion, people whose drs. reccomend tysabri have already tried every medication on the market for crohns disease as well as antibiotics which are a first line approach to crohns disease. therefore you don't have to worry about tysabri because your not eligible for the medication.
Joined Sep 27, 2008
Sat, September 27, 2008 12:00 AM
Reply posted for covenmistress9.
WOW you sound just like me. i have had crohns disease for 11 years. Basically the meds either did not work or i became allergic to the others. i have had 2 surgerys and just started tysabri 2 months ago while i was a inpatient in the hospital. i achieved remmision right away. although i have had some side effects. i have discussed with my dr. whether the side effects are worth it. I am going in for my third infusion on monday. in all the years of having crohns. the tysabri has actually has allowed me to achieve remission. To me it's worth it. Also in terms of BMs i go twice a day thats all. if you have any questions email me at mevscience@yahoo.com I will forward to hearing from you. I wish you well. mev
Joined Sep 27, 2008
Wed, September 03, 2008 12:00 AM
Reply posted for covenmistress9.
One more thing...I noticed in your post that you said that you have been denied benefits? All of these pharmaceutical companies have patient assistance programs. Also, try going to www.patientaccessnetwork.org or www.copays.org
Those are two organizations that help out financially if you qualify. Just an FYI! I know those medications can be expensive!
Good luck and I wish you well!
mary bJoined Sep 3, 2008
Wed, September 03, 2008 12:00 AM
Reply posted for covenmistress9.
Hello! I would also suggest going to www.tysabri.com/crohns to get more information. The side effects are certainly something to be concerned about! It is always a good idea to get as much information as possible. I would also suggest calling the Information Resource Center the CCFA provides at 1-888-MY-GUT-PAIN. They have trained professionals that can answer alot of your questions about different medications. I would also suggest calling your local chapter!
mary bJoined Sep 3, 2008
Fri, August 29, 2008 5:43 PM
Reply posted for covenmistress9.
Hi Kimberely,
Here is some info on tysabri--it's a little scary: http://www.fda.gov/cder/drug/advisory/natalizumab.htm
Have you tried any of the antibiotics? My son and I are both diagnosed w/ Crohn's and Vancomycin works pretty well (it was first prescribed for him by a pediatric gastroenterologist and when I saw how much it helped him, I asked for it, too.)
We also both have figured out we have food allergies and avoid the foods that affect us (his is dairy, mine is wheat). My son is actually in much better health than I am, maybe because I ate wheat until my 30s. I maintain a moderate condition using vancomycin as needed with no other meds.
I am hoping you can find a treatment that helps.
norakozJoined Aug 29, 2008