Tysabri is back...and now I have a net...

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hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 8/23/2007 7:54 PM (GMT -7)   
I was put in the Tysabri trials long befor ethey ever started identifying it as Tysabri....it work very well for me...and then some folks died while using it....and they took it off the test market.
This well over two and 1/2 years ago.
 
My doctor and I decided together to start me Humira....I have been active with CD for the last two and 1/2 years.  By choice I have refused to do the Remicade thing...and it was a hard choice for me to try the Humira....I just have felt that the risked side effects for either one were greater than the chance that the drug would work...the % of folks who have not gotten any help from either drug is pretty high.  I know Tysabri worked for me.
 
So now I am waiting for my loading dose of Humira to get here tomorrow....then next Friday my wife and and I go to the Doctors office and learn the proper way to use the Humira Pen.....MEANWHILE, on Wednesday (Yesterday) I recieved a phone call from the doctors office where I was treated/tested withthe Tysabri.  It turns out that Bio-gen/Elan have moved forward and would like to open the trials back up...so they asked all of the doctors who participated before and are willing to do so again to call all of the folks like me who were in the trials and find out if we would do it again.
 
I told them I was about to start Humira but I would not do so if they wanted me to stay clean so I could I get the Tysabri.....NOW HERE IS THE GREAT PART....They told me it could be a few months before they actually get to the test part...first they have to get the protocols and stuff sorted out and then it  could be another month after that...so 3 months minimum.  They suggested I start the Humira...if it works well for me...stay on it and forget the Tysabri, but if it does not help me....then 8 weeks after my last injection I can start up with the Tysabri....even if they have already started the trials.   So now I have a fallback....this is just too good to be true....and for everyone else...if-when...they release Tysabri, that will be a great day for those willing to take it.
 
I have been waiting years for this day and that phone call.
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...will start Humira Aug 28th 2006
Crohns is currently active and has been since April of 2005
50 yrs old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/24/2007 3:15 AM (GMT -7)   
Hi Not sure what Tysabri is but not liking the part where you said some people died. Hopefully your getting the Hum. will work out great for you .Glad your feeling so comfortable with your life of having choices and future help. lol gail

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 8/24/2007 4:40 AM (GMT -7)   
gachrons said...
Hi Not sure what Tysabri is but not liking the part where you said some people died. Hopefully your getting the Hum. will work out great for you .Glad your feeling so comfortable with your life of having choices and future help. lol gail
Tysabri is a drug that came out several years ago and showed great results and even more promise in fighting Crohns disease.  It also was tested for MS and did even better for that group.  Out of about 4,000 or 5,000 people being tested...4 or 5 developed a reaction that is believed to have caused the release of the JC virus in them which led to progressive multifocal leukoencephalopathy.  I have heard that they all died...I have also read where all but one died and the one that lived is quadriplegic....either way not great news.  Only one of these terrible reactions was linked to the Crohns study.
 
The fact is that the MS community has never been offered a drug that worked so well.  Regardless of the deaths they fought hard and got the drug re-released (it had been fully released for MS even while it was still in trials for CD) and now under very close supervision it is available for the treatment of MS.
 
I was in the CD trial for over a year before I went open label testing and got the real deal...I was given the placebo for just over a year.  The change was nothing short of a miracle....I gained almost 100 lbs in a year.  I could eat and drink anything.  I could go anywhere wth full confidence...the only negative was that it wore off after about 28 days and the infusion cycle usually took 30 days.   When they pulled the drug of the market and canceled the testing ...I was crushed...
They tested me every way you can imagine for any kind of sign of the progressive multifocal leukoencephalopathy...including spinal taps.  Nothing showed up, but my CD went active and my health went south and has been going that way for the last 30 months.
 
I will ty the Humira, but it is great to know that the tysabri will be there if and when I need 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...will start Humira Aug 28th 2006
Crohns is currently active and has been since April of 2005
50 yrs old


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/24/2007 1:24 PM (GMT -7)   
I am also really excited about the potential for Tysabri. But, I don't like that .1% of PML... Not that I don't plan to take the chance when it's approved. However, this is why I am so hopeful about the Prochymal trial. If I get on that and it works, I can hold of with Tysabri. From what my doc says about Tysabri, it's a wonder for Crohn's patients as well! I was online August 1st, as soon as I awoke, to see what the advisory committee had said! It's good to hear that someone benefited from the trial. So sorry you had to be taken off of it. When you were on the trial, did you take an immunosuppressant along with the Tysabri?

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 8/24/2007 2:46 PM (GMT -7)   
The only other drug I took during the Tysabri trial was Asacol...thats it.  I have been told that I will need to be off of the Humira for 8 weeks before I able to get back on the Tysabri...and of course I will only do that if or when the Humira is not working.
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...will start Humira Aug 28th 2006
Crohns is currently active and has been since April of 2005
50 yrs old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/24/2007 3:55 PM (GMT -7)   
Hi again glad your going to give the Hum. a good shot and thank you for the info.lol gail

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/24/2007 4:20 PM (GMT -7)   
hspenser -- Why will you need to wait 8 weeks after Humira? Is it to allow your immune system to get back to a normal level? Or, is it some sort of open label that you can get into since you were in the initial trials?

Kenny23
Regular Member


Date Joined Aug 2005
Total Posts : 128
   Posted 8/24/2007 4:27 PM (GMT -7)   
I don't mind Tysabri as an option. The individual has a right to take a chance for good health. But I would definetly try Humira first.

I've read Tysabri's trial results online and the numbers weren't exactly staggering. Although it was evident that a percentage of the patients did extremely well. I'm sure if the numbers were better there would be a bigger push by the Crohn's community, and more people willing to try it.

Hspenser, not sure if you would know this, but will there ever be test to check for the latent JC virus? Just like most people get a chest Xray to check for TB before getting Remicade/Humira.
dx december 04.  Resected in March 2006.  Final year at penn state.


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 8/24/2007 8:36 PM (GMT -7)   

 

Shari....It is an open label test and yes I am being asked to participate again because I was in the original trial as well as still being in the trials when they pulled it.  I was in trials with Tysabri for over two years.   I was told that the protocol says I must be off any of the drugs like Humira...or remicade...for at least 8 weeks before starting up with the Tysabri again.  I am only guessing here, but, I would guess that many of the folks that were in the trials have moved on to other meds and will need to stop taking them IF they decide to go back to Tysabri...so I am sure that Biogen and Elan will have taken this into consideration when they finish the protocols.  Back when I first started in the trials...Humira was not an option (at least not one that I had heard of yet....the same Doctor that I will go to if I do the Tysabri also ran trials for the use of humira on crohns patients...)

Kenny....I was one of those who did very well on it before...that is not to say it is a sure thing to work this next time.  Iasked about a test for the JC virus and never really got a clear answer...not sure why....but from what I read a very large percentage of us (something like 80% or more) have the JC virus dormant in our bodies...sowhile having it in your system certainly increases your chances of a bad result....the concern of the drug company is focused more on why it gets active and not who has it in their body.


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...will start Humira Aug 28th 2006
Crohns is currently active and has been since April of 2005
50 yrs old

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