Post Edited (ivy6) : 2/26/2008 10:16:03 PM (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.
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.
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.