May be time to move on to Tysabri

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hspenser
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Date Joined Dec 2005
Total Posts : 544
   Posted 2/8/2008 5:35 AM (GMT -7)   
I have been on the Humira for almost six months now ...I take two shots every other week.  To date I have noticed a few positive signs....I have gained weight (maybe 8 lbs now) and for the first time in 2 years need to rethink my eating so as to not gain too much.  I have a hrad time calling what i have diarrhea anymore....I still make a lot of trips, but things have firmed up a lot.  My absorbtion is much better and i am no longer considered anemic. No more bleeding, haven't seen any blood (except when I hit my finger with the hammer) in 4 months.  So those are the good things...on the negative....I still go a lot,... good days less than 10 trips....bad days over 20.  The cramps when I go are so severe they cause nausea and at times vomiting.  For the first three or four days after the shots I have major trouble sleeping and my arthritis kicks into overdrive.  My movements have become more and more explosive in nature and harder to control.
 
So this visit I am thinking it is time to bite the bullet ...get of the Humira for 8 or 10 weeks and re-enter the world of Tysabri.  I have a friend who is under going Iron infusions at Johns Hopkins and she says last week and this week the ward was filled with folks getting their dose of Tysabri....I would guess we will hear more on this board soon as to the effectiveness.
 
So just some open thinking and looking for some feedback. 
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


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 2/8/2008 2:25 PM (GMT -7)   
Boy would i like feedback too. My doc wants me to try one more clinical trial before going for Tysabri. (This one is phase 2, CP-690.555 being tested for RA now. Next to no lit online about it with Crohn's. It's a Jak-3 inhibitor, whatever that means! ;-) )

How long were you on Tysabri in the trial before it started helping? I am spiraling so fast down hill with my bleeding and pain that I can't blink fast enough. I am scared to risk another placebo!!!

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/8/2008 6:54 PM (GMT -7)   

I had immediate results....but I also had immediate failure when taken off....so I have to asume that this works on the symptoms and not so much on the disease....but it worked great and I was almost symptom free for two years plus.  I gained almost 100 pounds.

I called my insurance company today (I switched to BC/BS as of the first of the year) and they have not as of this date approved Tysabri.  I am asking my doctor to prescribe the treatment for me so that if they turn me down I can demand a review of the drug and try to get it approved...I am told by BC/BS that this is a very common way hat drugs like this get on the approved treatment list.


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


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 2/8/2008 7:08 PM (GMT -7)   
? Here. If it worked, why did you stop? Or did the trial just expire?

Matthew

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/8/2008 7:42 PM (GMT -7)   

They started testing it with MS patients and at one point just before releasing it for general use in the treatment of MS some of the folks died...3 or 4.  I believe one of the dead was in the Crohns study.  The drug was then pulled immediately.  Subsequent studies have pretty well concluded that it was the combination of the other drugs the victims took that actually caused the problem.  They are so sure of this that the FDA has allowed the release of Tysabri for treatment of Crohns without further testing.  It was released for the treatment of MS about a year ago ..maybe longer.

I had been asked about four or five months ago to be in the new tests when they started but I held back because I was just starting treatment with Humira...once I discovered that Humira was by no means a complete answer I called the doctor who was in charge of the tests only to discover that they had scrubbed the test and were going straight to market.....

 


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


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 2/8/2008 9:29 PM (GMT -7)   
Thanks for the info... It's good to know. I also have BC/BS of OR. I guess that gives me added incentive to allow myself the new trial. I am worried about going too far downhill and the reality of a placebo in a clinical trial. But, it it's going to take a fight with BC/BS, I may as well pursue the two at the same time! I just want to feel better. 9-10 hours of sleep each night and I am exhausted at 8am. I am a single mother with a 10-year-old and I can't keep up. I hate taking Vicodin, but otherwise I can't sleep even with the heating pad. I am just feeling really down right now and thinking about just jumping to Tysabri. After all, the other compound is only in phase 2 and who knows what evils it holds! I haven't been on any immuno-suppressive meds since December. It would be a great time to move to Tysabri in that regard.

Thanks for the vent...

Shari
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