Franks Tysabri exp., little sideeffects, no improvement

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

Postby Frank » Thu Jan 14, 2010 4:27 pm

After I had my 27th infusion yesterday I talked to my neuro about what to do after Tysabri. His recommendation was not to take any other CRABS and see how things are going. If another relapse occured her would advice me to take an interferon (I already tried COP prior to Tysabri with limited success).

In his opinion, getting back on to Tysabri -even after a break of year or so - would come with unforseeable risks, because there is no data available that shows how the immunesystem recovers from Tysabri. While there is a defined "wash out time" for Tysabri, it still remains unclear whether Tysabri did some long term changes to the immunesystem, the BBB or maybe it allowed the JC-virus to evolve to a more dangerous state - in whatsoever way.

Regarding upcomming therapies like Rituxan, Campath or Cladribine my neuro thinks it will be unlikely that after Tysabri (even if there would be a reasonable break period) I would be eligible to get any of them as some sort of "first line" treatment. The only thing that would sound like an option for me in the nearer future might then be BG-12....

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Postby Frank » Thu Mar 04, 2010 9:56 am

My Tysabri treatment is now on hold. I got my last (28th) infusion on 11. Feb.
I will not immediately start anything new (inf, cop).

As I discussed with my Neuro, if the natural course of my MS is not doing well we might think about a intermitting regime like being on Tysabri for 6 month and off Tysabri for 6 month.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Posts: 543
Joined: Wed Jan 03, 2007 3:00 pm
Location: Germany

Postby Frank » Thu May 06, 2010 12:20 pm

Just to give a little update on me. I stayed off Tysabri since 11.Feb 2010. So far I'm doing pretty well. I do not take any DMDs for my MS at the moment, besides my usual supplements regime.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Posts: 543
Joined: Wed Jan 03, 2007 3:00 pm
Location: Germany

Postby Frank » Mon Jul 26, 2010 11:52 am

Update: I'm off Tysabri for 5 month now. So far I had no recurring issues with MS symptoms whatsoever. My neuro adviced my to go on an other medication sometime later this year - maybe Cladribin or Glinea (FTY-720).

As I live in germany and prof Vogl (from Frankfurt) is not far from the city where I live I also might consider to let him check my veins for CCSVI - especially because I'm hopeful that my insurance will cover the costs.
On the other hand I (as most people i guess) want to make sure if I let my veins be checked that he is doing it meticulously right - and I'm not really convinced that he will. Going undiagnosed because of a false negative could be capitally misleading for my further therapeutic direction.

I will keep you updated...

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
Family Elder
 
Posts: 543
Joined: Wed Jan 03, 2007 3:00 pm
Location: Germany

Postby Frank » Sat Jul 16, 2011 5:22 am

FYI, I had the JCV antibody test done. Its just blood drawn from the vein and sent to Denmark where the analysis is done. It takes about 10 days to get the results back.
Unfortunately I'm positive. So this would make a potential Tysabri therapy in the future pretty risky...
But especially in that regard, the decision to get off Tysabri after 27 infusions was a good one...

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
Family Elder
 
Posts: 543
Joined: Wed Jan 03, 2007 3:00 pm
Location: Germany

Postby LR1234 » Sat Jul 16, 2011 11:49 am

Hi frank,
Just checking in with you to see how you are doing x
LR1234
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