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Posted: Fri Jul 20, 2007 4:34 am Post subject: I just began my Tysa treatment
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
Joined: May 26, 2004 Posts: 1324 Location: London, ON, Canada
Posted: Fri Jul 20, 2007 8:26 am Post subject: Re: I just began my Tysa treatment
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.
Posted: Mon Jul 23, 2007 3:54 am Post subject: thanks for the advice Harry
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
Joined: Jun 26, 2004 Posts: 229 Location: Near Chicago
Posted: Fri Jul 27, 2007 10:49 am Post subject:
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 since 6/04/07~
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...............
Joined: Jun 26, 2004 Posts: 229 Location: Near Chicago
Posted: Fri Jul 27, 2007 2:04 pm Post subject:
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 since 6/04/07~
Posted: Thu Sep 20, 2007 3:31 am Post subject: Third infusion so far, so good.
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.
But i still have some difficulty to walk for long distances, although i feel more energetic.
Joined: May 26, 2004 Posts: 1324 Location: London, ON, Canada
Posted: Thu Sep 20, 2007 8:06 pm Post subject: Re: I just began my Tysa treatment
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?
Hello Harry
first i am not a doctor, so don't consider me as THE adviser
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.
Joined: May 26, 2004 Posts: 1324 Location: London, ON, Canada
Posted: Fri Sep 21, 2007 6:42 pm Post subject:
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.
Posted: Mon Jul 07, 2008 3:05 pm Post subject: About my Tysa birthday
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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