Early onset of PML after 6 months!

[0485c10]

Small print. I wrote the details I could read then closed the wrong window & lost it. Anyone want to do it again. Not a good time for me.

23 year old man. Diagnosed with
MS at 14.
Active MS failed with Copaxone & Betaseron.
Started Tysabri September 2009 with EDSS level of 5, February2010 rapidly declining cognitive function & worsening upper limb ataxia.
Tysabri stopped.
MRI showed normal MS lesions and an ill-defined, non-enhancing left temporal lobe lesion.

3 months after Tysabri stopped, plasma exchange (PLEX) started 3 sessions over 2 months. mirtazaprine 45 mg/day started.
3 months after the PLEX some improvement in cognition and ataxia, mirtazapine stopped and copaxone started.

IRIS was not observed, maybe because so much time between stopping TY and starting PLEX.

Average time for PML after starting TY is 20 months, this was in 6 months. may be because of low cd4+ T cell count(100ml) because of Azathioprine, which was tried before Tysabri======I am not certain if Azathioprine is an immune suppressant, they warn us not to use before Tysabri because it increases the risk of PML...

would really like it if someone would look that up and post it in a reply.

i would also like it if anyone corrects any errors i wrote. The text was very small.

Thank you.

http://msj.sagepub.com/content/early...422929.extract

[0485c10]

There was someone else who repported this & said her Ty nurse had told her it had happened. I replied her Ty nurse must have been confused with the crohns patient who got pml after 8 months, but nobody with MS has gotten PML before 12 months.

I was wrong, i apologize to that person if she is still around. Her Ty nurse had been accurate and she had posted something new. I'm sorry, just consider me doubting Thomas, i don't believe anything until I read it in print.

[0485c10]

Azathioprine is an Immune suppresant.

Azathioprine is used with other medications to prevent rejection of kidney transplants.

It is also used to treat severe rheumatoid arthritis

Azathioprine is in a class of medications called immunosuppressants.

It works by weakening the body's immune system so it will not attack the transplanted organ or the joints.

This 23 year old man should not have been allowed to start Tysabri!

[0485c10]

He was at an EDSS level of 5, four years after diagnosis(14->18).

Started Ty..after unsuccessful treatment with copaxone,betaseron azethioprine

-ty begun Sept 2009
-PML symptoms began Febuary 2010 (worsening cog function & upper limb ataxia),
-presented at clinic June 2010 EDS level 7.5 & several deficits in cog function
-Ty stopped CD4+ T cell count 100m/l
-underwent 3 sessions of Plex & put on 45mg/day of mirtazapine
- 3 months after Plex mild improvent in cog functions & limb ataxia. mirtazapine stopped copaxone started.

[KarenR]

Average time for PML after starting TY is 20 months, this was in 6 months. may be because of low cd4+ T cell count(100ml) because of Azathioprine, which was tried before Tysabri======I am not certain if Azathioprine is an immune suppressant, they warn us not to use before Tysabri because it increases the risk of PML...

would really like it if someone would look that up and post it in a reply.

Thanks for this report, 04. Scary stuff.

Azathioprine is Imuran, and is definitely an immunosuppressant.

I was on Imuran (along with Rebif & pulse steroids) for about 9 months early in my MS journey. The use of Imuran, plus being JC+ and having 46 infusions is the exact reason why I stopped Tysabri.

I hope this young gentleman is doing well.

[lindaincolorado]

So very sad...l
I hope he is doing o k.

[mgoerke]

Hi,

I was the one who got the news from my nurse about the early PML. UMDNJ is part of the Stratify study so they have the up to the minute info on PML.

I am JCV positive, but I'm still on Ty. It's my best option at this point to get this under control.

PML scares me but even with one case of early onset PML the numbers for PML in <12 infusions are really good.