Calling all Tysabri Users...

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

Postby Arron » Tue Feb 08, 2005 10:54 pm

whew-- insurance "mistakes" are never funny! Glad it all worked out and please keep us updated on how you're coming along.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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2nd Tysabri infusion !

Postby MichelleMM » Wed Feb 09, 2005 5:57 am

Hi everyone,
I had the second infusion of Tysabri yesterday morning. It was very uneventful. I did have the foresight this time to take Motrin right when the infusion began to help prevent the headache and low grade fever that I got after the infusion the last time. They started the Tysabri at about 9:45 am. The infusion went well over 1 hour and then I was surprised to hear them say, see you next time. I did not stay the additional hour to make sure there were any problems. This made me a little nervous, but luckily nothing happened. I drove myself to and from the infusion and had no problem. I felt great for several hours, then I began to feel very tired around 4:30. I had a very slight headache, but no fever. I just went to bed a little earlier and woke up feeling fine. (with the exception of my everyday symptoms). So I definitely have to say that this time was better and that pre-medicating with Motrin was a good idea.
I'm going to see a MS specialist at the end of the month. Just to make sure I'm on the right path with the meds I'm on now and if there is anything else I should be doing.
Thanks everyone for the help. Michelle
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Postby flora68 » Wed Feb 09, 2005 8:33 am

:( .
Last edited by flora68 on Wed Feb 09, 2005 3:17 pm, edited 1 time in total.
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Starting Tysabri Soon

Postby Baumer » Wed Feb 16, 2005 3:35 pm

Hi All,

I just got off the phone with my insurance company. They said that I was approved for Tysabri infusions for 6 months (after which they would re-evaluate progress). After I got off the phone with them, I called my neuro's office and they are going to try to get me in Friday. :D

I pretty much had to drive the insurance thing. Originally, my neuro tried to go through Biogen, but after two months of nothing happening at the Biogen/Blue Cross communication interface, I decided to drive things myself, getting the doctor in direct contact with insurance and cutting out the Biogen middleman. Within two weeks, I have my answer. Much better than the "wait two more weeks and call back to see if we've heard anything" response that I kept getting from Biogen. :x

I'll keep you posted on how thing go with the infusion.

TTYL,
Aaron
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Postby MichelleMM » Thu Feb 17, 2005 7:21 am

Good Luck Baumer ! Check out the 2 year trial results..impressive.
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Postby LindaNY » Fri Feb 18, 2005 11:50 am

I just had my first dose of Tysabri two days ago. It was just fine. i did get a SLIGHT headache but nothing to talk about.

I am very Happy how it went. If you are going for Tysabri, there is nothing to be nervous about. Totally GREAT experienece.
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Finally had my first

Postby DeeDee » Fri Feb 18, 2005 6:21 pm

Everything went well. I had a slight headache and felt somewhat tired afterwards. I do believe that was from being stressed from the whole procedure thing. So far so good. My next is schduled for March 18th I will let you all know how it goes.
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First Tysabri Infusion

Postby Baumer » Tue Feb 22, 2005 11:50 am

I had my first Tysabri infusion yesterday. Everything went really well. I took 2 Advil about 30 minutes before the infusion and came away with no side effects or headache what-so-ever.

My second infusion is scheduled for March 24. I'll keep you all updated on how that goes.

Thanks,
Aaron
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Postby Arron » Tue Feb 22, 2005 12:22 pm

Great news! keep the posts coming... this is extremely important information and if nothing else, makes those switching to Tysabri a little more comfortable knowing what to expect..
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Tracking Tysabri consumption vs production

Postby Don » Tue Feb 22, 2005 3:30 pm

There is concern in the investment community that Biogen may not have the capacity to supply the demand for Tysabri, especially toward the latter part of 2005. Biogen's CEO stated there may be "pinch points" in the supply chain if total Tysabri users reach 40,000 toward the end of 2005.

I am trying to roughly determine the rate at which Biogen is drawing down on its stocks of Tysabri. Each vial of Tysabri carries an expiration date which is 15 months from the date of manufacture. Vials produced in 08/04 carry a 11/05 expiration, vials produced in 09/04 carry a 12/05 expiration, and so on.

If all of you Tysabri users report the expiration date on the vial and the date you saw it in these posts, I will be able to keep this board apprised about the rate of consumption vs production. Those on Tysabri have no need for concern. The Biogen CEO, when talking about capacity, said he wasn't worried about the first infusion, he was worried about the 12th.

If end users report the expiration date and date seen, I will report the rate of consumption vs production, which should be valuable information to those considering but not on Tysabri.
Don
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Tysabri Supply/Demand

Postby DenverCO » Tue Feb 22, 2005 5:43 pm

Don,

You are going to have a difficult time tracking Tysabri manufacture dates that way. With the other injectable MS drugs, the patient is in actual possession of the drug so they can see the expiration date on the package. With Tysabri, a nurse mixes the drug and discards the vial and packaging out of sight of the patient. I have had 2 infusions at 2 different facilities, and that's the way it went both times.

But you are in luck! I asked for the boxes to keep as a souvenir (...don't ask). The expiration on both was 11/05.

DenverCO
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Tysabri consumption vs production

Postby Don » Wed Feb 23, 2005 12:01 pm

Thanks, DenverCo.

You will probably not be surprised that you are not the only Tysabri user who has asked for the box the vial came in. I have seen posts on other MBs where MS patients did exactly the same thing.

This method of tracking expiration dates is not a valid measure of how fast wholesalers and distributors in the aggregate are going through their inventory. But it is valid to make a rough calculation of how fast Biogen is going through each month's production. The more people from different parts of the country who report the dates an expiration date is seen, the more accurate the measure of the consumption rate at the manufacturer level.

Those end users who are patients can simply ask for the box if they are curious or want to share that information here. Others at the end user level include infusion center personnel or the physicians office if the infusion is being administered there. For example, a neurologist who posts on another board reported receiving a shipment of vials on 2/18, all of which were 11/05 expirations. That means the wholesaler who shipped them to the doc still had 08/04 production. It says nothing about Biogen's inventory.

Biogen manufactures Tysabri and sells it to Elan for U.S. sales. Elan sells it to wholesalers and distributors who, in turn, sell to sites administering the infusions. Since Biogen and Elan have to follow the FDA's GMP, I know they ship their oldest product first (first-in-first-out, or FIFO). I presume wholesalers and distributors do the same, as FIFO is standard operationg procedure with any dated product.

I have seen one post from a person who says he is a MS patient reporting a 12/05 vial on 1/31/05. If that post is accurate as a matter of fact (something I cannot validate), that means Biogen was all out of 08/04 production no later than 1/31/05. The more posts I see with 12/05 reports, the more comfortable I am about the validity of the underlying fact.

Since the "pipeline" between Biogen to the end user went from zero inventory before approval to whatever inventory is there now, the first couple of calculations will not carry a high confidence level. In a few months, however, with enough reports of expiration dates from end users, I will be able to report back how fast Biogen is going through each month's production. IMO, this information should be useful to MS patients considering going on Tysabri.

In any event, thanks for your response and help. I wish you well on Tysabri.
Don
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tysabri blogger here

Postby xanthia » Wed Feb 23, 2005 1:58 pm

I started a blog to document the effects of Tysabri for anyone interested;

http://xanthia.blogspot.com

Thanks,

Xanthia
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infusion details

Postby xanthia » Thu Feb 24, 2005 2:30 pm

Mulcher wrote:What is an infusion, is it an IV drip? Can someone describe it in details?

Many thanks! :oops:


I have described what the infusion process is like in detail on my blog here; http://xanthia.blogspot.com/

Feel free to check it out.

- Xanthia
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Tracking Tysabri

Postby LindaNY » Thu Feb 24, 2005 4:02 pm

Hi Don, My vial says 11/05 and I got my first dose 1 week ago.

God bless
Linda
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