Starting Tysabri [aka, "the final frontier""]

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jamo0001
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Date Joined Apr 2007
Total Posts : 75
   Posted 6/24/2008 6:46 PM (GMT -6)   
nt

Post Edited (jamo0001) : 11/30/2013 3:24:24 PM (GMT-7)


Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 6/24/2008 6:53 PM (GMT -6)   
I wish you luck! You are truly entering unknown waters~~ keep posting!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/24/2008 6:55 PM (GMT -6)   
Good luck, James. I know I'd not have the nerve to try that one. Hope it all works out for you.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 6/24/2008 7:28 PM (GMT -6)   
Although we were discussing this drug in another thread yesterday and people were saying its super-dangerous, I have been doing some reading up on Tysabri, also known as Natalizumab and it really isn't as nasty as it was made out to be yesterday. Most of the problems seem to stem from it being mixed with other drugs.

From what I can work out, when its not in use with other drugs, its reasonably safe.

Let us know how it works as this drug is extremely interesting to me. It seems to be a new class of drug, different from Humira or Remicade in that it acts against alpha-4 integrin rather then TNF-alpha. Thus it will often work for people that fail to find success with Remicade.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


bookworm21
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Date Joined Mar 2008
Total Posts : 1766
   Posted 6/24/2008 8:16 PM (GMT -6)   
Good luck and keep us posted!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 6/24/2008 9:24 PM (GMT -6)   

If I may ask, James, and I don't mean to be sharp:  What about keeping your diseased colon makes you want to try a drug with potentially fatal consequences at a practice where you will be the only person to have ever tried it?  I sure do hope it's not to satisfy your doctor's curiosity:  How he feels about surgery at this point is irrelevant.

Best of luck.


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 6/25/2008 3:47 PM (GMT -6)   
Personally, I don't know if I'd need that reassurance. Surgery is not failure.

I'd say you're really taking a big step into the unknown. It would be unsettling to me that my doctor (from the largest practice in town) couldn't provide another patient who heeded his advice about a potentially fatal medication.

Have you talked to someone in real life about this?

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 349
   Posted 6/25/2008 4:04 PM (GMT -6)   
Jamo0001- I hope I can add a positive to tysabri. I have been on tysabri now for three months with my third infusion on friday. Even though I have crohns, not UC I can say that if it were not for tysabri I dont know where I would be now. I was on prednisone for 1 year and no other drugs worked. Humira had no effect. I weened off prednisone and started tysabri a day later. Im one of only 5 IBD patients on it at the Cleveland Clinic and Have had no symptoms for two months. I can eat just like I did 2 years ago. I hope you have the same response as I have.
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). Off predisone and on tysabri 4/3/2008
============================================


Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 6/25/2008 4:21 PM (GMT -6)   
I would certainly use Tysabri- but not if my GI had never used it before, & had no other patients in his practice who had ever taken it! It's good to have other minds to bounce things off of, even doctors like to compare notes, & not to have that is a huge drawback in my mind. Plus, the fact that he dismissed your choice for surgery is a huge red flag. You make that decision, not your GI. Go for it (the Tysabri) if you want to give it a a shot- but maybe try & find some doctors who are currently using it, who have experience with it, & know what to look for if anything should go wrong. Who can at least answer your questions about it. The drug itself can't be that dangerous- it's FDA approved & in use. Although- if you read the prescribing info on it- you definitely SHOULD NOT take it if you have had recent exposure or concomittant exposure to immunosuppresants or tnf blockers- which you have both.



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 100mgs/day
Culturelle
 
 
 
 

Post Edited (Eva Lou) : 6/25/2008 4:20:51 PM (GMT-6)


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 6/25/2008 4:47 PM (GMT -6)   

Approved for only for MS and Crohns in the US.  MS only in the EU.

By his doctor's logic, Thalidomide was a great anti-nausea drug for pregnant women. . . until the FDA got concerned about malformed babies.


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 6/25/2008 4:59 PM (GMT -6)   
i NEVER HEARD OF THIS NEW TREATment until now, must check it out! Hope things improve for you soon.
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/25/2008 6:28 PM (GMT -6)   
It's certainly true that the number of people affected by the leukodystrophy has been miniscule. I hope it works well for you if you decide to go ahead with it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 6/26/2008 3:19 AM (GMT -6)   
It would depend very much on how bad my UC got before I tried Tysabri. I would also want someone experienced to administer it. I have no fear of dying, only of dying painfully, so the idea that I might be the 1 in 200 who's brain wacks out doesn't bother me in the slightest.

To rebut the earlier comment by seconder:
secoonder said...
What about keeping your diseased colon makes you want to try a drug with potentially fatal consequences at a practice where you will be the only person to have ever tried it?


I do agree that the patient should be given the final choice, but this is major surgery and has about the same odds of killing you, especially when your UC is as bad as it is for jamo0001. (Judilyn is the wiz with the stats so please correct my numbers if I am wrong here).

You only really hear about j-pouch etc when its successful. There are a lot of other health risks and deficiencies you stand a good chance of inheriting by having your colon removed. J-pouch is often not successful in the case of someone like jamo0001 as the rectum itself suffers from UC.

James is 21 years old and impatient to get better I know, but often waiting can be worthwhile. I've had "diagnosed" UC for 12 years now, since I was first diagnosed we have had massive breakthroughs in research and understanding of this disease that have resulted in drugs from the 5-ASA series to the biologics such as remicade, humira, golimumab and tysabri.

What jamo0001 proposes is permanent, no going back and good chance he'll have a colostomy bag for the rest of his life. His doctor seems to be looking out for him and trying every available option before taking such drastic action.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/26/2008 6:49 AM (GMT -6)   

If your signature is correct, massive breakthoughs in medicine notwithstading, you still have severe pancolitis, yes?  It still has a major effect on your life?  There is life beyond uc and the surgery, and its possible complications stress me less than the thought of living with uc or taking any medication the doctor throws at me. 

Most people who have had the surgery really do seem much more well adjusted than those who continue trust that some silver bullet is right around the corner.

As it stands, James is being asked to take a drug that has a potentially fatal side effects, at a practice that has no experience administering it, for an unapproved use, seemingly in contradiction to the limited prescription protocol of the drug.  That would give me serious pause. 

You could look at it this way, though.  Relative to the number of people who eat beef in this world, the people who have contacted CJD have been few.  Nonetheless, Britain slaughtered millions of cows to prevent the spread of BSE and other countries try to ensure BSE doesn't infect its cattle.  What's the big deal?  No one wants to die of a brain disease that could have been prevented.

At any rate, I've said my fill.  Good luck, James.  I really do hope you discuss this decision with someone in real life.


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 6/26/2008 11:19 AM (GMT -6)   
Jamo....i also live in Lexington....do you mind telling me who your doctors are?  interested in maybe switching from my current

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/26/2008 11:36 AM (GMT -6)   
Severin said...

You only really hear about j-pouch etc when its successful. There are a lot of other health risks and deficiencies you stand a good chance of inheriting by having your colon removed. J-pouch is often not successful in the case of someone like jamo0001 as the rectum itself suffers from UC.
Well, I definitely wouldn't say you only hear about it when it's successful because for me anyway, a lot of the information I've find online like at j-pouch.org are from people who are suffering complications but these are the minority and I think it's something like 95% of all j-pouch surgeries are successful and the patients are happy with their decision; most even say they wish that had done it sooner.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/26/2008 4:52 PM (GMT -6)   
I talked to my GI today about surgery and he said j-pouch has a 90% success rate. And if you're relatively healthy (as in, you didn't need emergency surgery, you're blood levels are okay, etc.) when you have surgery, you are less likely to have complications, and therefore a better recovery and surgery outcome.

I understand about trying one more thing before surgery--surgery is irreversible and has risks, so it's a bit scary (for me anyway). But I don't think I'll be trying any more drugs if Remicade fails.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/27/2008 10:09 AM (GMT -6)   
Here's a short blog entry (from last year) about Tysabri: http://blog.healthtalk.com/life-with-colitis/karen/treating-ibd-with-tysabri/
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/27/2008 3:22 PM (GMT -6)   
It sounds like your GI wants to use this drug against the recomendations of the maker (every drug you're on is on the interaction list).  This GI has no track record of this working for his patients because you would be the first, and the entire time you are ready for surgery.  I would definately be asking some very pointed questions to your GI before I would let him stick me with that (like why are you going against the recomended use? for one).  No matter your choice, good luck and if you go the surgery route be sure to research and learn all you can to be better prepared.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


AKB
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Date Joined Mar 2006
Total Posts : 992
   Posted 6/28/2008 2:08 PM (GMT -6)   
There is so much misinformation on this thread, it's amazing. I have a loved one with MS and so I know ALL about Tysabri-- I've been following it closely since Phase II trials.

"I might be the 1 in 200 who's brain wacks out doesn't bother me in the slightest."

Even though you mean well, this is false. This was the IMPUTED rate of PML (progressive multifocal leukoencephalopathy, the disease everyone is referring to that MIGHT be tied to Tysabri plus the use of other immunosuppressives) during the last Phase III trial. Since then Tysabri was approved by the US FDA + EU to treat MS patients, of which 26,000 are now ACTIVELY on the drug WITHOUT A SINGLE ADDITIONAL DETECTED CASE OF PML.

The folks who developed PML did it after exposure to multiple immunosuppressants-- lowering their body's ability to fight a very common pathogen, leading to the brain-wasting disease PML.

As a safety precaution, a restriction was placed on Tysabri sales that EVERY ONE taking it must register with the drugmakers, Elan + Biogen, and be consistently screened (including MRI) for any symptoms that might indicate PML. If your doctor doesn't know about that, or suggests you take additional immunosuppressants (like Remicade or azathioprine) then I'd stop and find another doctor, otherwise you're not going off the deep end as most people here seem to suggest.

I'm amazed at how rabidly people are suggesting removing an organ over trying a drug that is in WIDE RELEASE and is highly monitored by the FDA. There's a risk of dying on the surgery table or of the pouch failing that is probably far greater of contracting PML (disclaimer:conjecture). You can try Tysabri for 3 months (make sure to have a nice wash-out period for any of your previous therapies like Remicade) and make your decision then. Everyone has different risk tolerance, but that's how I would be thinking as it's not like you're taking some concoction from his back closet or taking a drug that is in limited clinical trials.
Dx:

Left-sided UC, Jun 2005. Flex-sig only... clear for first 20cms, then inflamed through next 30cms.

Therapies:

Pharmaceutical: Pentasa 3G/day, hydrocort 1x every 7 days
Probiotics: Acidophilus Pearls, Primadophilus Bifidus
Naturals: Caprylic Acid, Methylated B-12, Vit ACDE, Zinc (w/copper), Selenium, Turmeric, Bromelain, Luteolin
Killer Foods: Soda, Fried Food (especially french fries!), Beer, Red Wine, Pepperoncinis


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/28/2008 2:43 PM (GMT -6)   
In someone who has been hospitalized with refractory ulcerative colitis, what sort of nice Remicade "wash-out" would you recommend?

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/28/2008 3:31 PM (GMT -6)   
AKB said...
There is so much misinformation on this thread, it's amazing. I have a loved one with MS and so I know ALL about Tysabri-- I've been following it closely since Phase II trials.

"I might be the 1 in 200 who's brain wacks out doesn't bother me in the slightest."
 
That number is coming from someone who is on your side of this debate.  I do believe though that its use is to say that even if the number were that high that Severin would still be willing to try it.

Even though you mean well, this is false. This was the IMPUTED rate of PML (progressive multifocal leukoencephalopathy, the disease everyone is referring to that MIGHT be tied to Tysabri plus the use of other immunosuppressives) during the last Phase III trial. Since then Tysabri was approved by the US FDA + EU to treat MS patients, of which 26,000 are now ACTIVELY on the drug WITHOUT A SINGLE ADDITIONAL DETECTED CASE OF PML.

The folks who developed PML did it after exposure to multiple immunosuppressants-- lowering their body's ability to fight a very common pathogen, leading to the brain-wasting disease PML.

As a safety precaution, a restriction was placed on Tysabri sales that EVERY ONE taking it must register with the drugmakers, Elan + Biogen, and be consistently screened (including MRI) for any symptoms that might indicate PML. If your doctor doesn't know about that, or suggests you take additional immunosuppressants (like Remicade or azathioprine) then I'd stop and find another doctor, otherwise you're not going off the deep end as most people here seem to suggest.
 
And here is the same concern most of us have for James.  His doctor wants to start the injections within a week from his original post.
Actual quote from his original post:
"-I get my first infusion next week. We'll know within a week if it's working."
A quick glance at his signature will let you know the medicines that he is probably still using.  He just got off of Remicade and is still on Imuran (by his signature line).  His doctor has never done this before (inexperienced) and is already going against the recommended use of the medicine.

I'm amazed at how rabidly people are suggesting removing an organ over trying a drug that is in WIDE RELEASE and is highly monitored by the FDA. There's a risk of dying on the surgery table or of the pouch failing that is probably far greater of contracting PML (disclaimer:conjecture). You can try Tysabri for 3 months (make sure to have a nice wash-out period for any of your previous therapies like Remicade) and make your decision then. Everyone has different risk tolerance, but that's how I would be thinking as it's not like you're taking some concoction from his back closet or taking a drug that is in limited clinical trials.
 
James was the first to say he was ready for surgery,(quote from his original post "-I pleaded my case for surgery now.") if that is how he wants to treat (cure) his disease then who am I to say he has to try every drug on the market (to include ones that are not approved for UC, just Crohn's and MS) before he can do that, considering I had surgery without trying Remicade or Tsyabri because I already had enough near death experience from immunosuppressants (ICU for 7 days, yeah there is a fatal side to immunosupressants they can promote sepsis along with other potentially fatal problems).  There are approximately 1,000,000 people in the US who have IBD (Crohn's and UC) and around 25% to 40% of those who have surgery.  This means that would account for 250,000 to 400,000 people who have successfully had surgery and are still alive today (that would be for ostomy and j-pouch combined).  Surgery being used up to 40% of the time means it has to be one of the main treatments for UC but Tsyabri is not used by 25% to 40% of UC sufferers so surgery is more readily accepted.  Next can you produce the statistics of how many people die on the surgery table?  I have been searching for those numbers since that is the first thing anti-surgery people use to combat having surgery but I have yet to find a credible source (actually any source) for these numbers.


Total Colectomy with End Ileostomy May 27th, 2008


DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 495
   Posted 6/28/2008 6:56 PM (GMT -6)   
AKB are you going to try it?

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 6/29/2008 6:08 PM (GMT -6)   
James,

I would recommend a 2nd or 3rd opinion about tysabri from a very qualified GI(s) and a consultation with a surgeon about a j-pouch..... There is no reason for you to be a test subject unless you want to be. There are other alternatives too; I use Cyclosporine when in a severe flare; it is more affective and faster acting than Remicade but it usually requires a hospital stay.

I may be a little out of line here but as an outsider (who has gone through this before) I think your GI sees a 21 year old who will do what he is told by someone of authority; and your GI wants to try Tysabri. I would seriously question him about why you need to rush into this (1 week).

Consult with a GI who has used Tysabri with a patient with Crohns; they've been probably been using it for the last 6-18 months. Don't be the first. Your World has been turned upside down by UC but you need to take your time in making the proper decision.

The crazy thing about UC and the meds is that some of the meds take a very long time to work but other meds can cause D..... Asacol sends me right to the bathroom with the worst D. I feel so much better when I am off of Asacol. UC is a trial and error disease; and in my opinion you aren't even half way to Tysabri yet. Tysabri may be a great drug but it isn't going to cure you; at best it will put you into remission, so I don't see a need to rush in.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Remission
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 6/30/2008 11:36 AM (GMT -6)   
James,

Good luck getting your insurance company to approve coverage of Tysabri for you. I've heard it is about 30k a year for the stuff plus all the tests that you need to go along with it. Your insurance company does not have to approve this since it is not FDA approved for UC; AKA as off-label use.

You can read more about Tysabri @ http://en.wikipedia.org/wiki/Natalizumab

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Remission
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 

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