Anyone take Tysabri?

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jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 2/26/2008 9:33 PM (GMT -7)   
I was on Humira for the past 2 years and i didn't get much benefit out of it. Or so I thought until after I was off of it. ;) but I still wasn't ever able to ditch the steroids.

Tysabri is supposed to be my next attempt at salvation. Was anyone here on it before it was pulled by the FDA? It is now available and I am hopeful to start taking it at the end of this week (got the all-clear today).

Looking forward to some feedback on this!

-J

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/26/2008 10:08 PM (GMT -7)   
We have had people on this forum who used Tysabri with good results. Hopefully they'll be along to talk to you soon.

You could also try searching back through the forum. Tysabri was a hot topic here about... oh... a month or so ago.

Have you heard about Prochymal?

I.
Co-Moderator Crohn's Forum.

Post Edited (ivy6) : 2/26/2008 10:16:03 PM (GMT-7)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/26/2008 10:14 PM (GMT -7)   
Here's a Tysabri thread:

http://www.healingwell.com/community/default.aspx?f=17&m=880124
Co-Moderator Crohn's Forum.


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 2/27/2008 5:27 AM (GMT -7)   
Thank you! I'd gone back to SEARCH but nothing came up. I'll go through the thread now. thank you!!!

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/27/2008 7:00 AM (GMT -7)   

i would be happy to answer any questions I can about my experience on it and what little i may know about the drug....I was on it for two years and am now working towards getting back on it.

 

my doctor is concerned that it may not work the second time around or it may not work as well.  he is also concerned that I will regress in a major way when I give up the Humira for 8 to 10 weeks prior to starting the Tysabri.  At this point we are trying to get my insurance company BC/BS to approv ethe use so that I can at least have the choice to move over to Tysabri when I/we decide to do so.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 2/27/2008 7:26 AM (GMT -7)   
I just got off of Humira and I can tell you that the last few weeks have been tough. BUT, if the Tysabri works then the suffering will be worth it.

BTW - I was dosing Humira every week, .8 . You are dosing every two weeks double that. is that more effective?

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/27/2008 8:33 AM (GMT -7)   
jid said...
I just got off of Humira and I can tell you that the last few weeks have been tough. BUT, if the Tysabri works then the suffering will be worth it.

BTW - I was dosing Humira every week, .8 . You are dosing every two weeks double that. is that more effective?
obviously, I can't, based on what I know, make any comparisons to your experience...and I have a hard time knowing how effective my treatment is.  I have some relief...but not as much as I would like and certainly nothing close to the Tysabri.  I feel as if the disease has started to morph into something else now that the Humira has stopped my constat "D".  The bleeding is not as often but there is more of it when it does occur.  My arthritis is getting worse than it ever has been...and about once or twice a month the cramps are so bad when I go to the bathroom that I end up throwing up....so I think I have just traded symptoms.  In my discussion this week with my gastro he was very sure to explain that no matter how well a drug works...it is not a cure...as we all know: there is no cure at this time.  The drugs simply slow down the disease and address certain syptoms.  I found that to be especially true when I was taken off Tysabri.
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 2/27/2008 8:48 AM (GMT -7)   
I am sorry to hear about your challenges. I can completely relate. The abdominal pain since I have gotten off of Humira has been debilitating. And the current treatment is more Pred. I've been on 20-80mg of Pred for the last 8 years... and it isn't fun. And I can feel my mental capacity significantly hindered when on the Pred. The more the Pred, the slower my brain is. Which is terrible b/c I used to be be incredibly sharp... but not anymore. I can tell.

With the humira, I ebbed and flowed. some weeks were OK and some were not. OK being a 6 or 7 out of a 10. With Remicade, i was a 9.5 out of 10 for 18 months! I am praying that the tysabri can bring a similar relief. But I really don't know.

With the Tysabri, how quickly (after your first dosage) did you notice any change? With remicade it was like 36 hours i noticed a change. With Humira, 8 weeks in I couldn't tell. Any thoughts on Tysabri? that isn't something the Dr's will really share...

Thanks in advance!

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/27/2008 9:06 AM (GMT -7)   

For me...and again that is the important thing to recognize, since you probably will be a bit or a whole lot different....the change and relief was almost immediate...literally within hours

Throughout the ordeal of crohns I have been very lucky in that I have not required surgery...never had any blockages or other major issues other than severe cramping, bleeding, arthritis,the big BIG "D", and major weight loss due to poor absorbtion.  The poor nutrition has also led to constant problems with energy levels.  My contstant bouts of diarrhea meant 15 trips a day to the bathroom on a good day and as many as 20 to 25 on a bad day.

When I first started in the study group I was given the placebo...after 2 infusions they moved into the next phase and I was placed in the Tysabri group....(all of this came out after the tests were over since it was a blind test)  after 6 months I went on open label.

I knew the day I got the real deal....the infusions took place in Gainesville, FL and I live an hour and a half away in the Tampa Bay area...by the time I got to my car in the parking lot (30 minutes after the infusion) I was feeling more alert and clearer of mind.  By the time I was half way home I was feeling great...I could conquer the world....by that night I felt like I could eat anything.....after 4 weeks I started to notice a downward trend in my physical well being.....then I would load up on another dose and BINGO all better again.

That is how it worked for me....

As another comparison...I felt some improvement from the Humira with in a few days.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 2/27/2008 9:31 AM (GMT -7)   
Your description of Tysabri is almost exactly how I felt with Remicade. I could actually feel the meds as they started to work and then as they started to wear off. While my response to Humira was quite slow, i am hopeful that my experience will be like yours.

The 'wearing off' affect is definitely there with Remicade.

My symptoms are like yours in that I'm 15+ broom trips and on bad days 25+... my legs fall asleep and i get sore... yuck!

Thank you for your thoughts! I will keep you all posted on my experience with the Tysabri when I get started (crossing fingers for this week).

LOL
New Member


Date Joined Feb 2008
Total Posts : 11
   Posted 2/27/2008 1:08 PM (GMT -7)   
Hi, I'm new here but I've lurking around for a long time.  It is so wonderful to find others who understand what I go through. I've picked up some great ideas on dealing with things your doctor doesn't talk about.  You guys are great! Anyway,  the FDA released information about Tysabri and possible liver damage.  Just thought I'd share. 
 

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/27/2008 1:18 PM (GMT -7)   

that is surprising and disturbing news....

 

I know they did blood draws before each and every infusion...liver panels was part of the test.  I never had a problem...but that is not to say that others won't.  I would hope that they could make an educated guess as to who was more likely to have an issue and then not prescribe it.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/27/2008 4:24 PM (GMT -7)   
I know that they have to put out these warnings, but they can happen with almost any of the medications we take. I had a bad reaction that injured my liver with 6-MP, and yet most people on this site can take it with no problems. I'm currently on hold for my remicade because we're investigating some wierd neurological symptoms. It's hard to say what to take, and when to avoid the medications due to the potential dangers.

Good luck and keep us posted as to how well it works for you,

Bev
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