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

Franks Tysabri exp., little sideeffects, no improvement

Postby Frank » Fri Jan 05, 2007 10:33 am

Hi,

I'm 30yo, EDSS around 2, currently 12 years with RRMS now. I live in germany and just got my 3rd Tysabri infusion.

I noticed mild sideeffects, like little headache on the infusionday and some occasional dizzynes.

I cant report any improvement so far but I'll be happy if things wont get worse.

I'll be back if things change...

--Frank
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Keep us posted

Postby gwa » Fri Jan 05, 2007 10:37 am

Thanks for posting your results. It is interesting to me how well you are doing on this new theraphy.

gwa
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Postby Frank » Wed Feb 07, 2007 12:41 am

Just to keep anyone interested informed...

With my fourth infusion, three days ago, everything stayed the same, very little sideeffect, and no changes in my health state...

--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 May 15, 2008 2:03 pm

So after my one year LDN / ABX course I'm back on Tysabri.
I got my first (alltogether sixth) infusion today.
Everything went well so far...

--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 superman » Sat May 17, 2008 3:39 am

Hi Frank
Glad to hear you had no problem for your last tysa infusions.

also i'm quite curious to know why you went to tysabri: from your testimonies i thought LDN and ABX were helping you.
I know it can sound a bit stupid: one can guess these treatments were not so successful. but could you please give more explanations.
Thanks
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Postby Frank » Sat May 17, 2008 11:27 am

Hi Superman,

in the beginning (first 6 month) the ABX/LDN worked very well for me, as I also said it might be that my improvements come and go with the seasons, so I cant really say what made me feel better.

In the autumn and winter month I got somehow worse again, event though I dont think it was not a relapse, so the season theory might be right...

Anyway, the ABX protocol is intended to be used for at least one year and I had exacty 12 month on ABX when I deceided to stop.
So if a bacterial infection is the primary cause of my MS I might already got rid of it.

But just stopping the ABX and wait and see what comes next seemed to risky to me, so I deceided to go back to Tysabri.
First of all because of its effectivity but I also hated the daily injections of Copaxone which I had before.

So with the limited information and facts that are known about MS I just try to make out the best course of therapy I can.

--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 superman » Sun May 18, 2008 6:29 am

Many thanks Frank for your explanation.
v
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Postby Frank » Wed Jun 18, 2008 9:48 am

Just for the protocol: I had my 8th Tysabri infusion. I'm doing good so far - with nothing better or worse.

--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 anita » Wed Jun 18, 2008 10:22 am

Hi everybody,

I am just curious, why is tysa (as much as I read about it, is good.. :) ) allowed for example as I read in USA, Germany, but still not in our country (Slovenia). We just have some "choosen" wich receive tysa, as far as I know, four or five...I am sad :cry: becouse our health care doesnt cover the cost of tysa (rebif for example cost 3000€ for 3 moths, tysa 6000€ for 3 months) so they said that this medicine is not verify jet....

I just dont understand......


Have a nice day, Anita
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Postby HarryZ » Thu Jun 19, 2008 10:00 am

Anita,

Government health departments have to make decisions on what medications and/or treatments that they are going to fund or subsidize. There is only so much money available to pay for these drugs.

When they look at something like Tysabri, the health people have to determine the cost versus effect situation. This drug costs two, three and even four times as much as the older MS drugs Although you read that a number of MS patients do well on Tysabri, there are situations when they get no benefit at all or even become worse. I have read that some government health agencies are waiting to see more data on the drug before they want to pay the very high cost of providing it to the patients.

I realize that it is very frustrating at having to wait to possibly use Tysabri. Hopefully within another year or so, they will have better data for the medical community to study and thus approve its use in your country.

Harry
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Postby anita » Fri Jun 20, 2008 9:44 am

Thanks to you HarriZ,

I am wery happy that you reply on my mail. Sorry, that I have sometimes such a crazy questions, but I am just curious.......some say that tisa isnt so good, some, wich are "taking" it, says that this is the best, how can I discribe it, perhaps "sedative", so I am wery confused about it...and maybe tisa have influence to each pearson otherwise, like each medicine.....Like you write, I just have to wait year or two......I alsoo read that in year 2012 comes instead of (rebif,betaferon.......) just a tablet....

We will see,

And how is with you? How long do you have MS? What sort of troubles have you, are you on rebif or betaferon.....how you make your day easier....Wow, how am I curious... :oops:

thank you once more for reply

Anita
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Postby HarryZ » Fri Jun 20, 2008 10:50 am

Anita,

I think that Tysabri is going to help MS patients pretty much the same way that the other MS medications have done...some will do well, others so,so and others will become sicker. It's the huge cost that bothers me.

I don't have MS....my wife had MS for 35 years before she died last September from other complicated health matters. I have followed MS research for over 40 years now and have learned a few things over the years.

I hope your MS remains mild for a very long time and they come up with some decent treatment soon. The best of luck.

Harry
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Postby anita » Fri Jun 20, 2008 11:48 am

Hi HarryZ,

Thanks again....

I am very sorry for your wife... :cry: .
If you have been living so long whit this disease, I belive you know it very well. I think also this and other forums are very good. Here you can tell everything about it, you find much good thinks ... and I am very hapy that I found it.
Im 32 years old, and have MS since april 2008, so I am quite new here...I take now Rebif..and hope it will help me as much as this medicine can help ...Yes, it also bothers me all this huge cost of all medicines, for example tysa...

Have a nice day,....hope we type again.. :)


Anita
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Postby Frank » Tue Jul 22, 2008 2:32 pm

Got my 9th Tysabri infusion today. Still nothing spectacular to report - and thats just fine with me...

--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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hie

Postby superman » Wed Jul 23, 2008 1:41 pm

Hi Frank
Glad to hear that at least you do not have any new relapse(isn(t it?)
I am feeling quite close to you as i am too a 12 years RRMMs guy and am almost 30 years old
Ich hoffe nur, dass Tysabri dich ein bisschen mehr helfen wird. Persönlich kann ich jetzt 80 km Fahrrad fahren. Und du? kannst du noch so lang wie letze Jahr gehen? Ich hoffe. Sonst fahre weiter, so stark in dein Verhlaten zu sein.
(ich vermute mein französich ist nicht einfach zu verstehen ;-)
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