Has Tysabri Been Anyone's First DMD

[momof4boys]

Good Morning ~
I did 8 shots of the titration pack of Rebif on the recommendation of my local neurologist. I wanted to start something asap, as my appointment at a well respected MS Clinic in Chicago was not until mid May. The clinic had a cancellation and I got in 2 days ago.

I was somewhat surprised that the MS doctor didn't agree with the Rebif decision, as it is one of the best first line drugs. He said we needed to be aggressive with my treatment based on my brain MRI ( I'm too afraid to say the # of lesions he saw) and the mulitple liesions in the cervical and thoracic spine.
I have read that Tysabri is mostly used after other DMD fail.

So, my question is has anyone else been put on Tysabri without trying anything else ? I trust the doctor but just want to know I'm not alone with this.
Another thing, I'm really afraid of PML (I just had my bloold drawn to test for the JCvirus).

Any thoughts or input would be much appreciated.
Amy

[ru4cats]

momof4boys,
I just had my 20th infusion of Ty, and it is the only DMD I've been on. My neurologist gave me the information on all the available DMD's, let me know it was my choice, but she, like your neuro, felt that "hitting the MS hard" was the best way to go. I asked her at one appointment about starting with Ty, since so many others aren't allowed because they haven't "failed" on other drugs. She said current research seems to say that, if possible, it's better to hit the MS hard with the most effective drug rather than start with one of the early DMD's. Some neuro's, after a certain # of infusions, then move back to another DMD.

I love Ty and relish my infusion days when I get to read. I have found it an incredibly easy drug to take (I just don't think I could give myself shots). My last MRI was stable, and I feel I am doing well. I have tested negative for the JC virus. Not knowing their ages, but having 4 boys and knowing you'd want to be there for them, I wouldn't hesitate to recommend going on Ty. Even if you test positive for the JC virus, you are statistically good for 24 infusions. By then BG12 will be out and will have a track record, so you could switch. Hope this helps. Good luck!

[0485c10]

Hi Amy--it wasn't my first med, i used betaseron for 3 years before that became effective then i started tysabri @ the doc recommendation...ive been using tysabri since 10/2008 and i can say when i first started doc's were very strict about following that tysabri after a standard drug had failed.

Some time in 2009-2010,i first began communicating with people who were using tysabri as their first drug. I believe i read a study the group who had used no prior DMD had a lower PML rate than the group that had use any previous dmd? not sure about that, i think i read it.

I remember the 1st person i posted with who was using tysabri as his first med back in 2009-2010. He formerly worked as a physician assistant but was no longer able to do the work, in his early 60's had just been diagnosed with many active lesions in his brainstem. his doc had him start on tysabri.

you might want to read The article "Best Practice recommendation for the selection and management of patients with ms receiving natalizumab therapy"
you can find a link to that article on my home page in the tysabri section--the 3rd link down on the first tysabri page.

on page 3 of that article it has a paragrah for identifying patients for first-line natalizumab:

1. devastating first relapse.
2. poor prognosis MRI activity(t1 black hole, high # and volume of Gd+ lesions)

3. 2 or more disabling relapses in 1 year with 1 or more GD+ lesions on brain MRI

4.significant t2 lesion load compared to previous recent mri.
5.patients with mri activity in spinal cord
6. patients with functional deficits in cognition leading to disruption of daily activities
7.Minority patients whose group have poorer clinical outcome.

[Blackcross]

When I was diagnosed, back in 2001, I was asked if I'd like to join the Tysabri trials. I got my first infusion in February or March of 2002 and have only been off of it when it was pulled in 05. While on TY I have been free of Obvious relapses, though there's been slow progression through the years.

My Neuro still thinks it's the best option and I agree, as my rate and severity of 'lapses was pretty significant before Ty and when it was pulled. Plus I think it's a Good thing for Biogen to have Long Haul patients like me, so they have information on the long term effects. I Think I'm coming up on Infusion 93 or 94, but I know it's over 90.

[momof4boys]

Thank you all so much, your information has been very helpful!
I'm starting Tysabri as soon as I can.
Amy

[KyleW]

Tysabri is the only DMD I have used. Last Sunday was my 4th infusion. I was dx last October but apparently I've had MS for more than 20 years. Because of the length of time I've had it, and the state to which it has progressed, my initial dx was SPMS.

My MS doc was of a similar mind to ru4cats'. There was no reason to mess around and Tysabri was the best way to go. I'm JC virus negative so PML is not really a concern. The infusions are easy and completely without side effects. The first 4 were two hours each. The Tysabri is administered in the first hour and a saline drip + observation for the second.

From now on the second hour is not required. I am much happier spending an hour a month in a recliner rather than having to give myself daily injections

[LL60]

"the second hour is not required" ??

I have had 33 infusions and have been required to stay the second hour each time. Once a nurse was going to let me go after 45 mintues and the surpervisor jumped all over her!

I would love to cut things short after the infusion.

Anyone else get to go home early?

[KyleW]

"the second hour is not required" ??

Nope Next time it's 60 minutes and out!

[0485c10]

Not 60 minutes and out Kyle?? You wrote you got a saline drip after the infusion. for me after the first year, with no issues, it was a 1 hour infusion then a half hour saline drip, then i'm out.

when i get a vcacation nurse, i always say my normal nurse lets me go early. I tell her to set the infusion for no longer than 1 hour...tell her that if its less than that she won't hear a peep from me & if the tysabri is more than 1 hour she won't be able to shut me up.{wink}

the vacation relief infusion nurse always responds that the longer a person has used a med, the more likely they are to have an infusion reaction. so i can stay the full 1&1/2 hours.

my doc and they have all said i respond and tolerate meds well. i have a background in chemistry--so i just reply that i am a well buffered system so I tolerates meds well. never used drugs or acholol & never needed any maintenance meds before ms...actually didn't have a pcp or even keep an aspirin or tylenol substance in my home before ms. now with ms i have both.

i'm just well buffered. i think that 1 hour & 1 hour of observation is for people not as well buffered and tolerant of meds as people like me!

actually when the pml risk was first apparent & after tysabri had been returned to market, the incidents of PML were higher in Europe than in the US and they were looking at any possible difference that would cause that.

two difference were:

1. neuro's versus PCP
(in europe the neuro diagnosis then the PCP assumes general treatment for a chronic illness requiring maintenance)

2. In europe they ran the infusion in about 15-30 minutes and then let them go home.

biogen issued a recommendation that neuros treat people using tysabri not just diagnose them & also reiterated that 1 hour for the infusion.

really the rate is to avoid side affects & infusion reactions, it seems rather unfair to make people not predisposed to those things follow those rules too

when diagnosed with a rather significant episode. the doc ordered steroids to be done over 4 hours. I didn't get any headaches, or anything... during or after the infusion---so i begged the infusion nurses to call the pharmacist on duty to find out the fastest steroids can be infused. It was one hour, they adjusted the rate to that(1 hr) from 4 hours at my request.

Really it seem so unfair that people not predisposed to those kind of issues are trapped within the same rules as those that are predisposed to those issues. Not Fair!!!

[KyleW]

Not 60 minutes and out Kyle??

Yup, after 4 unremarkable infusions the saline drip is eliminated and once the Tysabri drip is finished I am excused.

[0485c10]

Yup, after 4 unremarkable infusions the saline drip is eliminated and once the Tysabri drip is finished I am excused.

i'm jealous!

[jbell2435]

Hi Amy

Good Morning ~
So, my question is has anyone else been put on Tysabri without trying anything else ? I trust the doctor but just want to know I'm not alone with this.
Another thing, I'm really afraid of PML (I just had my bloold drawn to test for the JCvirus).

I was just dx 9/16/11 and my nuero didn't even give Ty as an option, so when I decided on Copax I discussed with him and asked him about it. He said it was for more advanced cases and that he didn't feel it would be right for me at this time. I don't mind the daily injections, that much and wanted something very safe to start with and fewer side affects.

If things don't do well with this, I would consider Ty.

[KyleW]

with and fewer side affects.

For many, myself included, Tysabri has no side effects what so ever.

[Blackcross]

"the second hour is not required" ??

I have had 33 infusions and have been required to stay the second hour each time. Once a nurse was going to let me go after 45 mintues and the surpervisor jumped all over her!

I would love to cut things short after the infusion.

Anyone else get to go home early?

For me, once the Infusion and Saline are done, I have the option of staying the hour or signing a paper that basically says "I understand the risks of leaving early but I'm outta here"

Sometimes I stay and chat with the infusion nurse or other patients, but most times I sign out.

[LL60]

Backcross: like an AMA form? Against medical advice?
I think I'd be afraid to sign such a form, if something did happen then does that mean they don't have to cover your cost of treatment or something along those lines?

Since I have to take off work, I hate that the whole day is spent doing the infusion. I'd love to go do something else. Sometimes I have, but after 3 hours there I just want out of there and go home. By the time I check in, read and sign the paper, let them fax it, get my vitals done, start the iv, wait for the guy to deliver the stuff, wait the hour afterwards, get the iv out, get the paperwork - it is between 3 and 3 1/2 hours spent at the hospital.

I'm not complaining. I am so thankful to be on this drug. Just stating facts. I'd love to pop in and out in about an hour. But how it is done with my insurance it just isn't done that way.

At least last time they gave me about 4 forms to keep so I can answer the questions and just go in and hand them the form all ready to fax to Biogen. Maybe Friday I will save 5 minutes.