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Has anyone been on Natalizumab -Tysabri?

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Posted 8/28/2013 6:16 PM (GMT 0)

Has anyone been on Natalizumab -Tysabri?

How do you feel? Did it help you? Did you have any side affects?

Humera stopped working for me after 2 ½ years- I developed abscess and fistula, testing for antibodies came back positive.

I already tried Remicade – had a reaction during the 3d infusion. smhair

Posted 8/28/2013 11:28 PM (GMT 0)
I was on tysabri for 3 years. It was pulled by FDA. Started on remicade for 3 years. I was put back on tysabri when i built up ant-b for remicade. Then i tried cimzia (6 months) did not work at all. Just took second dose of humira, feeling better every day. I have not had any side effects from tysabri, it worked for a total of six years. Now remicade , i went into anaphylactic shock on 3 or 4 infusion. Discussed with GI doctors other options and he came up with premeds 12 hours before infusion 50 mg pred, 7hours before 50 mg pred, 1hour before 50mg pred, 50mg benadryl and aspirin. They slowed the infusion drip not to go over 100 drips. It took twice as long to get the infusion but it was worth it. Nothing has worked like remicade. I wish i could still be on remicade. I still have faith in humira, hope it works like the remicade.
Posted 9/7/2013 2:38 AM (GMT 0)
YOu may want to look into vedolizumab.

Same as Tysabri without the risk of PML

It is currently in Phase III trial and proving to be very effective

 

Posted 9/7/2013 3:23 AM (GMT 0)
Not to change the subject but would like to ask Zoso 73 a question...
I just recently started Humira and my dose is every 2 weeks.
I currently have an abcess and fistulas and hopefully over first c.diff infection, I just finished antibiotics cipro/flaygl (vanco in hospital) after 2 months. Is there different protocols for Humira? I obviously need to educate myself on Crohn's disease and ask alot more questions of my GI doctors. I am tired of being a guinea pig...LOL
Posted 9/7/2013 4:01 AM (GMT 0)
Humira can be taken once every week. I was on once a week and still developed fistula.
Did pretty good on Humira for almost 3 years! More people had better results with Remicade for closing fistulas. I also had c-diff. Start taking pro biotics to repopulate your good bacteria.
Good luck to you!
Posted 9/7/2013 12:41 PM (GMT 0)
I take it weekly with no issues
No different protocol for it either

On the c.diff
Typically, if you are taking a course of cup to or flagyl (I am taking both right now), you should be taking a probiotic to help maintain a healthy gut flora count. The best and cheapest to prevent or recover from c.diff is acidophilus. I would suggest it in pill form as well as through a yogurt like activia. I know the yogurt may give some cramping, but it is much better than having c.diff
I have been battling crohns for a very long time and have taken control of it for now
Let me know if you have any more questions
We can either correspond via the forum, or you can give me a call and I can answer any questions you have
Posted 9/8/2013 1:18 AM (GMT 0)
Thank you Zoso 73 and Exit 4 for your posts. I have had CD for 26 years and have did everything my GI has suggested, I just never asked for to much of an explanation as to specific tests or medicines. What idid not understand, I came home and asked my sons to google it for me and dumb it down so I could understand. Fast forward to now....
My sons moved out, went to college and one got married. I have not had access to a computer for awhile. Younger son took FMLA to come home and help take can of me and my dogs but insisted, no demanded, that I get internet. So as of July 17 I can surf the net or better yet, drown myself with the net....I'm learning so much from all you regular & veteran members. Zoso, your knowledge in all your posts amazes me. I have hundreds of questions to ask you but promise to ask a few at a time...... Thank you.......
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