I just began my Tysa treatment

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

I just began my Tysa treatment

Postby superman » Fri Jul 20, 2007 2:34 am

Dear all,
I started taking Tysabri on Monday 16.07.
I have not had any side effects, except feeling quite exhausted in the afternoon: i slept two hours.
Otherwise, I do not yet feel any improvements in my symptom: hobbling after walking 15 minutes or less.
I am a bit frustrated, since steroids' infusions have a much quicker effect on this symptom.
Also my body does not give me any sign, postive or negative, that it does react to this product.
I have read many testaments on this treatments, so i am quite optimistic on Tysa, but could anybody tell me when i should feel any effects, knowing my ms is still "mild" edss=1,5 but about 20 lesions?
Thanks
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Re: I just began my Tysa treatment

Postby HarryZ » Fri Jul 20, 2007 6:26 am

superman wrote:Dear all,
I started taking Tysabri on Monday 16.07.
I have not had any side effects, except feeling quite exhausted in the afternoon: i slept two hours.
Otherwise, I do not yet feel any improvements in my symptom: hobbling after walking 15 minutes or less.
I am a bit frustrated, since steroids' infusions have a much quicker effect on this symptom.
Also my body does not give me any sign, postive or negative, that it does react to this product.
I have read many testaments on this treatments, so i am quite optimistic on Tysa, but could anybody tell me when i should feel any effects, knowing my ms is still "mild" EDSS=1,5 but about 20 lesions?
Thanks


While some users of Tysabri have felt sudden bursts of energy within a few days of getting their infusion, the chances of you experiencing any major changes this quickly isn't likely to happen. Tysabri is a drug that is designed to reduce the immune system from causing more harm to your myelin and not to repair the damage. Your body, according to recent research, has the ability to repair damage to your nervous system and you can only hope that this takes place in your situation. With MS you just never know what is going to happen and you have to try and be patient.

Although steroid infusions have a much quicker effect on MS patients in reducing inflammation and thus masking attack symptoms, they do nothing to alter the course of the disease and can only be used so many times before they can become ineffective for the patient.

I know you are anxious to experience immediate positive results from the Tysabri but I suspect it will take a few months before you start to notice any major changes that may occur.

I hope all the best for you.

Harry
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thanks for the advice Harry

Postby superman » Mon Jul 23, 2007 1:54 am

Thanks Harry, for your realistic but not so optimistic response.
So basically i'll just have to wait still a bit after having waited to get Tysa,
let's say then "wait and see" as flegmatic Englsih do ;-)
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Postby ewizabeth » Fri Jul 27, 2007 8:49 am

Superman,

I get my third infusion Monday. I've seen some modest, gradual improvements since starting, mainly in reduced fatigue and cognitive issues. They are noticeable to me, not miraculous, but a great improvement over how I felt on A, C or R.

I hope Tysabri does a good job for you in reducing attacks and further disability and maybe some improvements as well.
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 superman » Fri Jul 27, 2007 9:15 am

Thanks Ewizabeth
for your support, i'm glad as well to see you're getting some improvements, even though not miraculous.
As long as it improves.
it confirms me i've got to be paaaaaaaaaaaaaaaaaaaatient............... :wink:
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Postby ewizabeth » Fri Jul 27, 2007 12:04 pm

Yes, it may take a few months to see if you'll get any improvements I suppose... At least you're on the one with the best potential to help.
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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Third infusion so far, so good.

Postby superman » Thu Sep 20, 2007 1:31 am

Hello everybody,
I have had my third infusion on the 15th of September.
The drug reaches its aim which is i have not had any crisis since i started taking it.
Also the absence of side effects makes me almost think i got water IV. :wink:
But i still have some difficulty to walk for long distances, although i feel more energetic.
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Re: I just began my Tysa treatment

Postby HarryZ » Thu Sep 20, 2007 6:06 pm

Superman,

Can you please advise us what kind of literature and information about Tysabri that you were given before making the decision to start on it. Did your doc discuss everything both positive and/or negative about it?

Thanks very much.

Harry
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Postby superman » Fri Sep 21, 2007 1:41 pm

Hello Harry
first i am not a doctor, so don't consider me as THE adviser :wink:

The first time i heard about it was when it was firtst withdrawn. My neuro told me that a great treatment would no more be soon available.
Then last year, in April 2006 i was in the middle of a tough crisis which let me time to spot on the web. i found out it was about to be back on the market (info on thisisms.com).

so i followed then the progress of its new launch, checking the FDA reports, and also checking the reports of previous patients who had been so happy to get it and sad to no more get it.
Also since my Rebif efficiency was decreasing: i had 3 crisis in a few months , when before it was once per two years, i was waiting for something new(and more important efficient). I was also aware of its risks, minimal considering the 2 dead people were taking Avonex and 2 amongst 3OOO, is not that bad.
But Tysabri was not yet available in France, so i had to wait still a few months.
After 6 months of Copax(my neuro had to make try another treatment before giving me Tysa) i had a new MRI that showed 20 lesions vs 4 before, which made i was a tysa candidate.
My neuro explained me then the risks which i knew already: even before, i had wrote her a letter explaining i was aware of the risks but also remindining why i did need it.
Anyway, she had already said me before it was allowed"if you were my brother i'd give it to you straight away", so the last toward Tys was quite fast.
She gave me the information of Biogen reminding all what it implied.
And then for my first infusion, a nurse gave me the paper contained in each Tysa bottle box.

I hope my experience helps you a bit, although, i don't have any Tysabri bible but the websites some good information about
http://www.fda.gov/cder/drug/infopage/natalizumab/
www.mspatientsforchoice.org
www.youtube.com when you type tysabri, you can find some conferences and other patients stories
and of course thisisms.com

So good luck and excuse my French cause i am :lol:
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Postby HarryZ » Fri Sep 21, 2007 4:42 pm

Hi Superman,

Thank you very much for your reply. BTW, your English is extremely good so there is no need for you to apologize :)

I am glad to hear that your doctor provided you with all the information so you could make an informed decision. There was a discussion on another MS forum where the question was asked as to how much and what kind of information was given to possible Tysabri patients before they made the decision to try the drug.

I hope the Tysabri works well for you and you benefit from this drug.

Harry
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About my Tysa birthday

Postby superman » Mon Jul 07, 2008 1:05 pm

Hello one year ago i started taking Tysabri.
Step by step it has helped me to regain some strength in my legs:
after some 10 minutes walk i had to held ramps when going up and down in the stairs. now that's all over.
As well, i really like cycling. (i used to love running but now i prefer not to)
Anyway, about cycling before taking tysa in July 2007, i could go for about 10 km and then stop, taking a nap before coming back. I know this can sound great for some of you, but a few years ago i could go beyond 170 km(record: 186 km not flat).
Although i am not back to these records, for these last week ends, i have some little tour beyond 40 km, without stopping and even these 2 last week ends a 50 and a 60 km.

Otherwise i have not had a single side effect except feeling very tired after my 1st infusion.
I am feeling so good that i can work after my monthly morning infusion.
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Postby belge » Tue Dec 09, 2008 9:50 am

hi superman!
i'm happy to read (a bit late though ;) about your great results with tys! I am on my 5th infusion and I had the feeling that things got better at first though now, each few weeks after the last 2 infusions I have less strength in my legs and can walk less and more hardly than before. it really depends on the day... today, for example it's really hard.
I was really happy to read that you can now cycle again because I have exactly the same "weaknesses" as you describe - no strength in legs after walking for 10 minutes or something like that. and I also loved to cycle and run but of course, now all this has not been possible since almost 2 years... :( And after reading your message I have some hope again that maybe one day my walking will improve too! but, yes, you're right - I have to be patient - it's worth it if it's the "only" thing it takes!
after how long did you start to notice some improvements? and did you have some "low moments" in between?
tnx ou plutot merci - si je me souviens bien, t'es francais, non?
veronika
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