Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Friday, April 24, 2009




My Tysabri Diary...

Hi everyone, I completed my 33rd Tysabri infusion last Wednesday (wow, have I had that many already?). Everything went fine and I even found out that my neurologist started another patient on Tysabri, woo hoo!

With respect to the latest PML case reported, I am not concerned at all... in fact, I would like to share with all of you the following (these remarks are from a treating neurologist that prescribes Tysabri and is an acquaintance of mine):

"Tysabri

The Benefits

1. Reported reduction in relapse rates 100% better than any exisitng therapy. Comparable MRI results.

2. Reported reduction in disability of progression up to 50% better than any existing therapy. Since this is a LAGGING indicator, expect the reduction in disability progression to get better and better (COMPOUNDING) assuming yearly reduction in relapse rates holds.

3. First drug to show quality of life improvements

4. First drug to show IMPROVEMENT in visual function

5. First drug to show reduction in fatigue

6. First drug to show significant subset of patients demonstrating IMPROVEMENT in EDSS scores.

7. First drug to demonstrate significant HAULT in ALL evidence of disease activity for a significant subset of patient population.

8. First drug to demonstrate significant improvement in patients with highly active MS

9. First drug to show significant improvement in Cognitive function (to be presented at an upcoming MS conference

10. First drug to show in-vivo evidence of re-myelination


The Risks -

1. Increase risk of liver enzyme elevations......... in very rare patient - jaundice

2. Increase risk of opportunisitc infections - small increase risk of herpetic reactivation

3. PML - 6 confirmed cases since re-introduction out of over 55,000 patient exposures, 40,000 active patients, and probably upwards of 40,000 patient years of drug. Well within label.

One death - I have been told that this one patient death was from IRIS and that patient and/or family refused hospitalization and treatment (to be hopefully confirmed at AAN)


PML serious potential side effect, with often moderate to severe neurological sequella. Importantly, NOT a death sentence, and can be detected early through clinical vigilence. MAY be treatable through PLEX and methoquine.

As to the most current MS patient that developed PML, this is from a German blog, and also a German friend of mine stated "the docs out there were amongst the first to leave the DDR via Hungary - before the wall fell.

With docs and nurses gone west - add techers too - the DDR was about to lose so many qualified people , which the state depended on, that this fact was one of the major reasons they finally had to open the border. Many of the docs who escaped the DDR have moved back since.

What I have seen from patients' posts - was that TY had been prescribed for patients who would normally not qualify as RRMS .... many of them claiming you just had to go to certain ms-centers --- in Leipzig or Dresden, know what to say and you would get your TY.

The following has been translated from a German blog:

formerly East-Germany.
15.04.2009 ? 31 Monate ? ? 6
Anmerkung: weitere Informationen folgen. Spekulation: Ist Deutschland nicht das einzige Land, außer den USA, indem Tys vor 31 Monaten schon zugelassen war? Gerüchteweise Dresden
Tini

Hallo,

ich war heut bei meinem Neurologen. Er hat mir gesagt, dass der 6. PML-Fall in Dresden ist.
Ich hoffe Pit, deiner Frau geht es besser.

Ich wünsche dir viel Kraft und ihr alles alles Gute.
Tini says that she had been to her neurologist today and he told her that the 6th case was from Dresden

She also stated: "But, I would say that there are also Neuros in western Germany, who treat their patients with mainly Aza and Mitox, due to low costs ( imo )

I know that for maybe 10 years now, docs in general have to prescribe generica - if they are exactly the same compounds as the original med-

Many patients write that they will take Ty "nevertheless" ( pml fear ) because " what else is there left for us to go on ?"

I hope BIIB sees what they are doing with their 1st Avonex policy :they degraded Ty to an escalation therapy, which means to some neuros, try everything else first and then TY.

It only takes a few of these uninformed specialists ...who think they are informed, but never take the time to read the newest abstracts."

Take care everyone,

((((hugs))))
Love, Lauren Cool

2 Comments:

  • At 9:43 AM, Blogger Erin said…

    Once again, Lauren, thank you for your information on PML. I immediately went to Biogen's investor site and made sure to tell other people that the PML case was once again, outside of the US. Only one case in the US since it was reintroduced. I'm loving Tysabri larger than life. I also saw an article this morning about the oral drugs and their side effects. The article went on to say that Tysabri is the MOST effective out of all MS treatments. My family and I are doing the MS walk tomorrow. We've raised over $1500---it's been harder this year, due to people pinching pennies, but one of my sister's members at her country club (she's executive chef/assistant GM) gave a $200 donation.

     
  • At 5:45 PM, Anonymous Anonymous said…

    Help! I'm confused. Is there anyone out there over 60 that's on Tysabri? After my 33rd infusion, my doc wants me to go off of Tysabri. I'm on it too long and my age factor is an issue. I'm Secondary Progressive. And I keep hearing that Tysabri is not for SP ms. I'm OK with the drug.....but my Dr's not. You can email me at lumax@ptd.net. Glory

     

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