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Ladybugs
Regular Member


Date Joined Jan 2006
Total Posts : 158
   Posted 3/11/2008 11:35 AM (GMT -7)   
My GI is thinking about putting me on Tysabri.  I haven't responded to Humira or imunomodulators (Imuran, 6mp) and my GI said he's been having some luck with some of his Crohn's patients and Tysabri.  I've read a bit about it and the side effects (PML) are very severe - fatal.  I'm not feeling very warm and fuzzy about this and I'm not sure I'm going to do it.  Anybody had any luck with Tysabri or know anything else about it?  Thanks

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/11/2008 11:40 AM (GMT -7)   
I'm all set to begin, though don't have my appointment scheduled yet. I am ready to accept the risk, if the med works. The risk of PML is not great in the first few months so I figure I will try it to see if it works... If it does I can then weigh the benefits with the known (small) risk. Though the drug is marketed with a 1/1000 chance of PML, since it was re-released in '06 as a monotherapy, no new cases of PML have appeared. There are now 21,000 people using Tysabri. The 3 people who died were severely immunocomproised. One never knows but none of these drugs are all that safe. Remicade and Humira triple the chance of leukemia/lymphoma. Just my thoughts.

I will be posting after I get my treatment. Also there was someone else on this forum who received his first infusion of Tysabri last week... Jid -- how are you feeling?
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 3/11/2008 2:17 PM (GMT -7)   
I started it on Thurs. No chance or negative change for me since i took it (as of today). Humira helped me a little but not enough to get me off the pred. I didn't respond to 6MP when i'd taken 6MP a year ago.

I talked to the nurse who handled the Tysabri for the drug study that was run a while back. they had like 20+ patients on it and they ALL did well. I think she said 20+. Anyway, i don't know what the time-to-notice-a-difference was, but w/ Remicade for me it was 24 hrs.

I wouldn't fear the Tysabri. I only hope it works for you. So far not-so-much for me.

J

biscuit
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/13/2008 1:17 AM (GMT -7)   
i corresponded with a pharmacist friend of mine who said he would take tysabri before taking remicade as he thinks tysabri got an undeserved bad rap. but neither one would get my ringing endorsement right now. good luck to you. i am trying to get my daughter on naltrexone to treat her uc...who knows...

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/13/2008 7:31 AM (GMT -7)   
I'm just getting so frustrated waiting. Every day comes and every day goes... Fevers are sporatic at more than half the days, vomiting too. The pain is daily. I wonder... Why does it take so long? The trainer was in last week. All the lab needs to do is fax the completed paperwork in and schedule me. I've called the lab, called my doc, called Biogen. (Biogen is very responsive, btw.) Still I wait. I know it isn't likely to kick in right away, if it works at all, but every day is another day that nothing happens and I get so fed up with it all! Sorry, just a vent.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/2/2008 9:57 AM (GMT -7)   
I just got back from the Cleveland Clinic And because Im not responding to any other medication I will be starting Tysabri soon. Little worried about it. How has everyone done?
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On prednisone and will be starting Tysabri Soon.
============================================


Dave123
Regular Member


Date Joined Feb 2005
Total Posts : 223
   Posted 4/2/2008 10:29 AM (GMT -7)   
I was in the tysabri study. Hands down the best CD treatment I've taken, which is pretty much all of them.

The results for me took several weeks to show but they were dramatic. What I remember most was how much more energy I had. Not to mention the much reduced cdai, D, pain, etc.

I'm doing fairly well right now on maintenance drugs, but would seriously consider tysabri again if I flare.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/2/2008 10:50 AM (GMT -7)   
I am at day 12 after my first infusion. It's been a slow progress, but I think I am responding and that it's helping. Like Dave123 said, I definitely notice more energy. I also feel like the pain is going away. Pain during BMs is tapered quite a bit. It's been good so far, just nothing immediate. I was glad to read your response, Dave, that it took several weeks. I hope I am on the right course...

It is scary, but when I start to feel better, it all seems worth it. I've been so sick for so long that I am thrilled at the idea of getting my life back.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/2/2008 11:24 AM (GMT -7)   
SR5599_ What was the insurance process like. The doctor told me to expect a call this this week with a appointment but I know the my insurance (united health care) is bound to deny me and send me through hoops. What it difficult to get approved and how long does the actual infusion take? Can you drive afterwards?
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On prednisone and will be starting Tysabri Soon.
============================================


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 4/2/2008 3:10 PM (GMT -7)   
I went to the CCFA’s Los Angeles conference this past Saturday and one of the workshops was about “navigating the IBD treatment maze” given by a very intelligent doctor who really presented himself and his materials well (something, which, even for an academic can be difficult.) He presented on Tysabri, and based on his presentation, I’m very excited about it. He stated that many more people have been tested on it since it was pulled from the market due to those three cases (only two of which died, not three) and they have not seen another case of the JC virus. The only reason I’m not chomping at the bit to get it now (despite my having just started Humira and it working really well) is that they don’t have Patient Assistance Programs for it yet so I wouldn’t be able to get it. As it stands, because I don’t have insurance, Abbott is nice enough to give me the Humira for free. Perhaps I’ll start on it once I begin full-time work and get benefits. I’d rather have the small odds of JC with Tysabri than the 3 or 4 times more likely to get lymphoma with Humira- a fact which really worries me.
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
Just started taking Humira and feeling crazy good.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 4/2/2008 3:42 PM (GMT -7)   
I am not familiar with the JC Virus. What is this?

Staci

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/2/2008 3:56 PM (GMT -7)   
The JC virus is a virus that lies dormant in about 80% of people's brain (http://en.wikipedia.org/wiki/JC_virus). This doesn't present a problem unless a person becomes immuno-compromised. If that happens, as with the AIDS population, the virus can activate into PML -- a quick moving, often fatal brain virus. The three people who got PML were severely compromised, not just Tysabri, but other immune suppressing meds too. (I don't know more details.) Since Tysabri was put back on the market in '06 as a regulated monotherapy, approximately 21,000 people are using the drug with no new complications of PML.

FinalMacGyver -- From the time I filled out my paperwork until I actually walked in for my first infusion, it was about 2.5 weeks. The labs nearby were not yet certified, so that was part of the problem. The prior-authorization (BlueCross/BlueShield) was quick -- maybe 3 days. My doctor's office was very thorough about submitting all the necessary documentation to prove that I have not responded to any other marketed drug. There is really no way that my insurance could deny the drug, from my perspective. Thankfully, there wasn't a fight. (I did have to fight with them in the past when I was getting Remicade every 4 weeks!)

The infusion is an hour... There was about a half hour up front (IV insertion, sign forms, etc.), the one hour infusion followed by a one hour observation (IV left in). So, total was 2.5 hours.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/2/2008 5:09 PM (GMT -7)   
sr5599 said...
The JC virus is a virus that lies dormant in about 80% of people's brain (http://en.wikipedia.org/wiki/JC_virus). This doesn't present a problem unless a person becomes immuno-compromised. If that happens, as with the AIDS population, the virus can activate into PML -- a quick moving, often fatal brain virus. The three people who got PML were severely compromised, not just Tysabri, but other immune suppressing meds too. (I don't know more details.) Since Tysabri was put back on the market in '06 as a regulated monotherapy, approximately 21,000 people are using the drug with no new complications of PML.

FinalMacGyver -- From the time I filled out my paperwork until I actually walked in for my first infusion, it was about 2.5 weeks. The labs nearby were not yet certified, so that was part of the problem. The prior-authorization (BlueCross/BlueShield) was quick -- maybe 3 days. My doctor's office was very thorough about submitting all the necessary documentation to prove that I have not responded to any other marketed drug. There is really no way that my insurance could deny the drug, from my perspective. Thankfully, there wasn't a fight. (I did have to fight with them in the past when I was getting Remicade every 4 weeks!)

The infusion is an hour... There was about a half hour up front (IV insertion, sign forms, etc.), the one hour infusion followed by a one hour observation (IV left in). So, total was 2.5 hours.


Well I'm anxious to start it. I have been off of HUMIRA for a little over a month due to them trying to get it approved through insurance for once a week rather than every other. The only thing that helps me is steroids, so I hope this gets approved a started quick as ill be completely off steroids in a month.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On prednisone and will be starting Tysabri Soon.
============================================


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/2/2008 9:54 PM (GMT -7)   
Sounds just like me. I fought with insurance to try to get Humira covered weekly. Even weekly it didn't do much, but this was a year ago and I had nothing else besides steroids (and that's when I hemorrhaged). They would not cover the weekly shots, so I just quit Humira and found a clinical trial. I hate the steroids! I have about 3 weeks and I will be off, so long as I stay on a positive trend with Tysabri. Nights like tonight I wonder... but overall, it's a positive trend.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/2/2008 9:54 PM (GMT -7)   
Sounds just like me. I fought with insurance to try to get Humira covered weekly. Even weekly it didn't do much, but this was a year ago and I had nothing else besides steroids (and that's when I hemorrhaged). They would not cover the weekly shots, so I just quit Humira and found a clinical trial. I hate the steroids! I have about 3 weeks and I will be off, so long as I stay on a positive trend with Tysabri. Nights like tonight I wonder... but overall, it's a positive trend.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 4/4/2008 9:18 AM (GMT -7)   

I was on Tysabri for well over a year...almost 2.  I started on the tests before they even named it...it was just a number then.  It put me into remission and kept me there until they pulled it from the market.  The only real warning I have is to watch out.....you can gain a lot of weight....I jumped almost 100 lbs in just over a year.  I have since lost it again...SO, I GUESS YOU COULD SAY:

On Tysabri I was sitting fat and happy.


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


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/4/2008 9:56 AM (GMT -7)   
hspenser said...
I was on Tysabri for well over a year...almost 2. I started on the tests before they even named it...it was just a number then. It put me into remission and kept me there until they pulled it from the market. The only real warning I have is to watch out.....you can gain a lot of weight....I jumped almost 100 lbs in just over a year. I have since lost it again...SO, I GUESS YOU COULD SAY:

On Tysabri I was sitting fat and happy.


If you don't mind my asking, did you gain the weight because you had your appetite back or it caused a prednisone type appetite?
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On prednisone and will be starting Tysabri Soon.
============================================


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 4/4/2008 10:48 AM (GMT -7)   
FinalMacGyver said...

If you don't mind my asking, did you gain the weight because you had your appetite back or it caused a prednisone type appetite?

It was from having a normal appetite....prior to the onset of the crohns I was a gym rat...my body fat was down to about 10 or 11% and my weight was around 225 (I am 6'1").  Once the CD kicked in I no longer had the desire or energy to workout.  I also was losing weight like crazy and my body mass/muscle was just being eaten away.
 
I suffered for a few years before getting on the tysabri....so by the time it kicked in I was a shell of my former self and down to about 180.  Once the Tysabri kicked in I really felt beter so i ate and ate...but I never got myself disiplined back to working out....so I just got fat.  turns out it may have been a blessing....In the first six months of not having the Tysabri I lost an average of 10 lbs a month...if i had stayed in shape and kept my weight down at the 225 range....I think i could have been in real danger.
 
There was no prednisone appetite or reaction...it was just that eating has always been one of my hobbies (I trained as a chef) and I really embrace that hobby.  It is probably why I can't get better...I can't stick to the soft bland diet needed.
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

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