Scary experience with Tysabri

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby amelia » Sun Nov 19, 2006 1:11 pm

For some of you that are "up" on research and such, is Rituxan similar to Tysabri, since it too is a monoclonal anitbody?
As many of you know, Gary has Devic's, not MS, and Rituxan is being trialed for it. Unlike Ty, Rituxan is taken "as you need it". Being a monclonal antibody, this is concerning me,
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Postby HarryZ » Sun Nov 19, 2006 2:50 pm

Amelia,

amelia wrote:For some of you that are "up" on research and such, is Rituxan similar to Tysabri, since it too is a monoclonal anitbody?
As many of you know, Gary has Devic's, not MS, and Rituxan is being trialed for it. Unlike Ty, Rituxan is taken "as you need it". Being a monclonal antibody, this is concerning me,


Here is a link that gives some easy to read info on Rituxan. The drug was originally used for cancer but so often as we have seen, they are trying more and more of these immune system altering drugs on MS patients.

http://www.lymphomainfo.net/therapy/imm ... tuxan.html

And yes, being a monoclonal antibody, risks are involved.

Harry
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Postby euphoniaa » Sun Nov 19, 2006 2:54 pm

amelia wrote:For some of you that are "up" on research and such, is Rituxan similar to Tysabri, since it too is a monoclonal anitbody?
As many of you know, Gary has Devic's, not MS, and Rituxan is being trialed for it. Unlike Ty, Rituxan is taken "as you need it". Being a monclonal antibody, this is concerning me,


Amelia,

Since I'm new here, I did a quick "search" of this site and found numerous posts and threads about Rituxan in the "Drug Pipeline" forum. Otherwise, I know nothing about it.

Best of luck to you and Gary in finding an effective treatment.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby ewizabeth » Mon Nov 20, 2006 7:35 pm

Hi Deb,

I hope "it" turns out to be nothing and we are all proved wrong for worrying about it. I think if it were as great as they first thought, there would be many more doctors prescribing it.

OddDuck wrote:Tysabri............whatever "it" ends up to be. :?



Harry,

I was thinking exactly the same thing. I had demerol for surgery once, and I had horrendous itching for three days, and they had to give me continuous IV Benadryl. I would NEVER take demerol again after that. I don't understand why they persist with Tysabri with an obvious allergic reaction.

HarryZ wrote:I find it deeply disturbing that so many MS patients are reporting around the internet that they're all set up to be infused with Benadryl along with Tysabri at their next infusion to ward off "another" allergic reaction.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby HarryZ » Mon Nov 20, 2006 9:35 pm

Ewiz,

HarryZ wrote:I find it deeply disturbing that so many MS patients are reporting around the internet that they're all set up to be infused with Benadryl along with Tysabri at their next infusion to ward off "another" allergic reaction.


Actually, that quote is from Euphoniaa from a previous message in this thread but I too find it disturbing!

Harry
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Postby ewizabeth » Mon Nov 20, 2006 9:43 pm

Ok, sorry about that Euphoniaa! This darn small type anyway! :oops: Well, we agree about this point... Thanks for pointing out my mis-quote Harry.

HarryZ wrote:Ewiz,

HarryZ wrote:I find it deeply disturbing that so many MS patients are reporting around the internet that they're all set up to be infused with Benadryl along with Tysabri at their next infusion to ward off "another" allergic reaction.


Actually, that quote is from Euphoniaa from a previous message in this thread but I too find it disturbing!

Harry
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby HarryZ » Sat Dec 02, 2006 8:16 am

Have been reading on a couple of MS Forums that some Tysabri patients who initially were on the drug before it was pulled, have developed anti-bodies to the drug. When trying to start back on the Tysabri, these patients end up having a severe reaction during the infusion which must be stopped immediately. Supposedly these patients cannot go back on the drug because of this problem. More frustrations that MS patients simply don't need in their lives.

Harry
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Postby DenverCO » Sat Dec 02, 2006 7:27 pm

HarryZ wrote:Have been reading on a couple of MS Forums that some Tysabri patients who initially were on the drug before it was pulled, have developed anti-bodies to the drug. When trying to start back on the Tysabri, these patients end up having a severe reaction during the infusion which must be stopped immediately. Supposedly these patients cannot go back on the drug because of this problem. More frustrations that MS patients simply don't need in their lives.

Harry


Leave it to you, Harry.
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Postby HarryZ » Sun Dec 03, 2006 8:24 am

Denver,

Leave it to you, Harry.


I guess we should keep this kind of potential problem a big secret and not tell anyone...after all, some people consider saying anything of a cautionary note about Tysabri as being "negative" 8O

Do you think that I make up this info? The comments come from real MS patients who were on Tysabri originally, stopped and then started again. They say that there are other patients in their infusion clinic who have experienced the same severe reactions and the episodes were more than frightening. Does this happen to the majority of patients?....of course not but do you not think that a MS patient who was on Tysabri originally would want to know about this possible problem?

What is kind of puzzling is that after such a reaction, the patient's doc is taking blood work and testing for Tysabri anti-bodies...I would have thought that this would have been done in the first place before resuming the drug because from what I remember, the docs knew about this potential problem during the trials.

Harry
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Postby ewizabeth » Sun Dec 03, 2006 8:34 am

Harry,

I remember way back to last January when I was asking my MS neuro if I could go on Tysabri... I was to start in February and take it with Copaxone. (It was the year it was pulled, was that 2005 or 2006... brain fog this morning.)

Anyway, he said something about, some people will develop antibodies, and then the therapy has to be stopped. But you won't know until it happens.

I don't recall if the test for antibodies is expensive or what, but he emphasized this to me. Maybe if it is really expensive, there's concern that the insurance company will not approve it, and so they wait until they see evidence of the antibodies? Does anybody know what the test costs? I know it shouldn't be an issue, but it could be for some patients with limited insurance coverage?
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby HarryZ » Sun Dec 03, 2006 1:05 pm

Ewizabeth,

Anyway, he said something about, some people will develop antibodies, and then the therapy has to be stopped. But you won't know until it happens.


Doing blood work for CRAB patients to test for anti-bodies and liver enzyme levels is a standard practice, especially during the first three months of starting the drug. The FDA really stressed this a couple of years ago because of the liver problems that were showing up in many MS patients.

With the CRABs, they often find that the Nab's, (anti-bodies) often rise at the beginning but often revert back to acceptable levels. The reason that the FDA stepped in was because they were finding that many docs were simply not doing these important tests. I'm not sure of the cost of them but regardless, they are very important.

I would have thought that somewhere in the Touch Program, taking a patient's blood at the beginning would be critical in order to establish a base-line. I also believe that this was going to be done to keep an eye for possible indications of PML although I understand that only a spinal tap is reliable for the JCV virus. Now that is a pricey test!

With all the possible potential problems in taking a drug like Tysabri, I would have thought that these testing issues would have been resolved by now.

Harry
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Postby Arcee » Mon Dec 04, 2006 8:40 am

I believe there are a couple of places offering the Tysabri antibodies test, including Athena Diagnostics. They have an up to 14 day turn around from when they receive the blod sample and when they report the results to the doctor. They also have a patient advocates program where the patient only is responsible for 20% of the cost of the test (around $115) regardless of whether or not the insurance company pays for the rest.

- Arcee
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Postby batpere » Mon Dec 04, 2006 3:57 pm

Arcee wrote:I believe there are a couple of places offering the Tysabri antibodies test, including Athena Diagnostics. ... They also have a patient advocates program where the patient only is responsible for 20% of the cost of the test (around $115) regardless of whether or not the insurance company pays for the rest.


The Athena price for the interferon NAB test was $995, for which the 20% upfront limitation payment was $195. Definitely do this if anyone does it through Athena. But a neurologist told me that a lower-cost antibody test was being developed that would be under $100. Has anybody heard if this has made it to market?
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