I wanted to but no one would let me. I even went to numerous neuros to try and get a yes. So you can imagine why i almost fell out of my hospital bed with excitement when they suggested i switch from crapaxone to Tysabri.

Most doctors are against it as a first-line therapy. What they don't realize is that if it works, it works great and they can save people a lot of time, stress and disability from playing with the other drugs.

I nrecieved for aboutn 24 infusions. I had never felt better. I had gotten freaked about PML, which is why I stopped. Sincce then all the meds that have been tried with me have resulted in bad side-effects. I am now in the JC Virus study group. The current thinking is that having a positive result MAY MEAN that you are more likely to get PML from Tysabri. I recieved my blood test results yesterday. They were neither Positive nor Negative, which puts me back to no meds at this time. This is what I posted in my journal today; I recieved my JC Virus blood results yesterday. It was neither positive or negative for the virus. The Drs.not know what this means exactly...a call was placed to Biogen to see if I can have the test repeated.


Today I went for a 1-day treatment of steroids. I really do not want to begin the school year in Sept without medication. For now I am going to be recieving steroids 1x/month until a treatment that does not give me side effects is developed/found.

Tysabri doesn't have approval as a first line treatment in the UK (where I am) and would be surprised if it was the case in the USA.

Avonex causd awful side effectsf or me for over a year and my body turned against Rebif after a year,and the ms flared up a number of times badly.

Tysabri is my only option at the moment, so I will have infusions for the next year, then at least two oral meds will be approved both in the UK and USA. Cladribine was approved for use in Russia last month. the evidence suggests tysabri to be completely safe for ms users up to 1 year providing no other meds are taken etc ...

I have run the gamut of aLLL the other drugs. Copax was useles and the side seffects from. Avonex and novantron were too much to bear I now take tysabri and love it. 3 hours of my time every 4 weeks. I've some itchiting side effect at timed later in the day but that's easy to handle. I think the drs do a good job with the touch system and keeping a closer eur on the labs.

There was a DS member here who did start it as a first drug. Her account has been removed. But she had been diagnosed and was recommended medication, which she declined to use, her MS really wasn't an issue. She went with self treating it by LDN....and with all meds sometimes they don't work for a person. And LDN didn't work for her BIG TIME!!!!

When her MS symptoms became visible, it became VERY visible. It wasn't like a slow progression, it was quick. She was w/c bound and had difficulty using her hands, along with the normal MS stuff. She would write her hands were claws some days.

She lives in Canada & she started Tysabri as a first med after pretty much ignoring meds for a long time...

Her login was DazyDuke..And of course mine is a 2nd person description of what I thought her story was...my 2nd person description is not as good or reliable as a 1st Person account. It would be considered "Hersay" in a court of Law..

The FDA recommends it be used as a first line drug, but with all thing the FDA issues there is room for deviations.

Another person wrote on a message board that The FDA "recommendation" or guideline, there is nothing else like ....it is like a law-it is followed closely, except when it isn't followed.

And its allowed as a 1st line drug in severe cases.

Its tough for us to determine whats severe, because we all think our MS is severe--but a doc can compare MS cases to determine whats severe enough.

From Best practice guidelines on patient selection for Tysabri use...poor prognosis, would trump the 2nd line drug criteria:

3. Patients fitting into poor prognosis category
.....Devastating relapse at onset
.....Early high relapse rate
.....High lesion activity/lesion load on brain MRI at first attack
.....Rapid onset of disability (e.g. cognitive, physical, activities of daily living)
.....High-risk populations with historically more malignant forms of multiple sclerosis

http://www.dailystrength.org/groups/tysabri-users/discussions/messages/8848268

CORRECTION:

The FDA recommends it be used as a first line drug, but with all thing the FDA issues there is room for deviations.

Should say
The FDA recommends it be used as a 2nd line drug, but with all thing the FDA issues there is room for deviations.

ive taken all the ms drugs too. i was one of the lucky ones (sarcasm) that took tysabri before the fda pulled it. since nothing works im back on tysabri for the third time. it doesnt help but ive seen it work miracles in some msers. ive hoped for that. i had to get a PICC line put in. my veins are done. im also JV positive. im waiting for campath (i heard its going to the fda 2012. it has ten years of research right now). chemo has been the only med to help me. ive used all my doses of novantrone.
tysabri just depends on the person. its a scary choice to make. you really need to have a dr you truly have faith in to help make a good choice.
i wish everyone the best of luck always. keep the faith even when its hard. and remember to smile. :)

I took Tysabri 3 times. The third time I had the same reaction I had when taking Copaxone (which I took for 10 months). The nurse started the pump & 20 mins into the infusion my face turned red, lips started swelling and my chest got real tight. I started throwing up. She turned the pump off & turned on a fan that was next to me. She also put Benedryl into my IV and about 20 mins later I was ok. Just VERY tired!!

Now this was just a reaction that I had & they suspected that I was allergic to something in the Copaxone & Tysabri. I actually havent talked to anyone else who has had this kind of reation so it just depends on the person.

With that being said I have monthly infusions done and meet alot of people that are getting Tysabri. The last woman I talked to that was talking it said it was the best thing she could have decided to take. She told me that this was her 34th treatment.

I recommend reading every treatment option and talking with your doc about each one. Best wishes!!