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 yeb4432 » Thu Jan 29, 2009 8:03 pm

right
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Postby Frank » Tue Mar 17, 2009 11:40 am

I received my 16th (11th since restart) Tysabri infusion today. I'm still feeling fine on Tysabri.

My neuro told me that, because of the PML cases, Tysabri will now be prescribed much more hesitant for patients who want to switch to Tysabri in germany.

Additionally he indicated that it will become common to draw Tysabri patients off after 20-25 infusions. Afterwards a patient should be carefully watched for elevated dissease activity. But basically neuros will be hesitant to bring these patients back on Tysabri anytime soon.
So maybe I - and many others - might have to look out for an alternative treatment in the near future.
What my neuro said to me is currently not a fact but as he is very much involved in the national professional discussion I do think things will turn out much like that.

--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.
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Postby yonderboy » Tue Mar 17, 2009 2:47 pm

Frank,

Thank you for your update on how things are developing in Germany. One question about your post: what do you mean by " a patient should be carefully watched for elevated disease activity"??? Do you mean increased MS - related activity because they are off Tysabri, or is this somehow related to the risk of PML?

Thanks,
John
(19 infusions, still going strong)
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Postby Lyon » Tue Mar 17, 2009 2:53 pm

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Last edited by Lyon on Sat Nov 26, 2011 2:13 pm, edited 1 time in total.
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Postby ursula » Wed Mar 18, 2009 6:18 am

Germany is the country with the most prescriptions for Tysabri (in Europe).
Maybe it´s reasonable to be a bit more reluctant in some cases..

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Postby Frank » Wed Mar 18, 2009 4:15 pm

what do you mean by " a patient should be carefully watched for elevated disease activity"?


Hi everyone,

I reffered to the MS dissease activity, especially to increased inflamatory activity as this is the factor of MS on which Tysabri works most effective.

The idea is not to watch out for a specially pronounced rebound effect but...
1. to investigate how long after stopping Tysabri there will be a prolonged, positive effect on the MS activity.
2. to see whether the dissease-course after stopping Tysabri - either without any subsequent medication or on another drug i.e. Copaxone - justifies a remedication with Tysabri.

--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.
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Postby Frank » Thu Jun 18, 2009 5:11 am

Just to keep track of my ongoing treatment. I received my 19th (14th after my one year break) infusion of Tysabri. I'm still doing fine and I'm happy to find that I did not have any relapse or worsening since I started with Tysabri...

Regarding the Tysabri break I do a least plan to stay on it through the winter season 2009/2010.

--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.
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Postby Loobie » Thu Jun 18, 2009 7:00 pm

Thanks for the update Frank,

It's useful to hear someone who is way further along on Tysabri than you yourself are. I am going through a relapse right now after my 7th (8th was due yesterday, but I'm on Solu-Medrol). It knocked it down in a big hurry which could mean that the relapse was going to be short lived Who knows? But anyway, I am having the CCSVI operation, but was planning to stay on Tysabri after receiving the stents.
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Postby Frank » Tue Sep 22, 2009 4:31 pm

Today I received my 22nd (17th after restart), infusion. I also had my 6 month routine MRI done, with no visible changes. I'm feeling really good, and taking into regards that its getting autumn (not my favorite season) thats specially god to notice...

Yesterday, during my daily walk, I even felt like I wanted (and also felt I could, what didnt came up my mind for a long time - maybe 1.5 years) to start jogging. It was only about 300m and certainly not fast and most likely it also didnt look too good, but I'm happy to see its possible at all.

--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.
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Postby rainer » Fri Sep 25, 2009 7:06 pm

Thanks for the updates.
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Postby ewizabeth » Sat Oct 03, 2009 11:30 pm

Hi Frank,

I had my 31st infusion of Tysabri yesterday. I'll check back in tomorrow. I haven't been to this site much lately.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby Frank » Wed Oct 21, 2009 9:20 am

Got my next infusion yesterday. Concerning my jogging ablities I have to say that my previously reported success was mosty due to a day or week of good shape. I was not able to keep up with my jogging exercises...

On 18. November I will have to undergo another surgery for my left ankle :cry:. Hopefully the needed recovery time will be much shorter than after the previous surgery in 2007...

--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.
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Postby Frank » Mon Nov 23, 2009 3:27 am

The next day after my 24th Tysabri session I had my ankle-surgery done.
Surgery went pretty well and hopefully this time it really fixed the underlying problem.
Im now recovering at home with crutches and plaster for four weeks...

--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.
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Postby Frank » Tue Dec 15, 2009 7:33 am

I had my 25th (overall) infusion yesterday. My ankle is doing much better again. I got rid of my plaster and indoors im walking almost normal again.

My neuro prepared me that he would highly suggest to get me off Tysabri in Feb 2010.
Though its reasonable regarding the potential sideeffects it leaves me with the question of what to then? I could start Copaxone again, but Cop actually was not that effective for me. Regarding other therapies the neuro suggests for me to be off Tysabri for at least a year.

Any good ideas?

--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.
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I'm a big believer

Postby Rebecca » Tue Dec 15, 2009 7:33 pm

I'm a big believer in George Jelinek's program which involves an MS diet, exercise, etc. Then I add some of my own things so what I do is listed on the Plan tab at http://intelligentguidetoms.wordpress.com .

I've heard that some have some nasty, nasty symptoms after stopping Tysabri. For this reason alone, I think I would try to make sure I was in top notch shape via diet, exercise, etc.

Anyway, all I have ever used since 1991 is natural approaches. They have worked so well for me, my doctors have never recommended I take any drugs. Then again, a lot of doctors here are not so impressed with the drugs as are doctors in many places. In total since 1991, I've had only four relapses. That's quite mild I'd say although the initial flare and a couple of relapses were NASTY, NASTY.

George Jelinek web site is at http://www.takingcontrolofmultiplesclerosis.org . You probably know about it all ready. He also has a Facebook page called "Taking Control of Multiple Sclerosis" and he issues little bulletins every now and then on recent research. He's always very informative and helpful.
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