Tysabri Recovery Series - New cases of PML

[22bellas]

You may not be a dr but better you are a smart man that's not scared to talk do ure studies and speak it godbless you are better than dr people listen to others stories then make ure own judgment on your own thanks Vern.

[vbeachy]

@22bellas Thank you! God bless you too! :)

[wendell3308]

Great to hear you're walking 2 miles Vern!

Sad to hear that our crippled US soldiers from the Iraqi & Afghani conflicts can't GET TYSABRI to help them walk....while medical research Canadian rats get it 2 hours after their spinal cords are broken & it helps them regain 50% of their locomotor functions!

Go to guv'mint website "Entrez-PubMed" & enter #s below & click Search. Ask ur Congress reps to help!

16379576

19038604

19929361

TYSABRI is @ military & VA hospitals now!

Is the FDA being FAIR?

[onojmai]

rock on! keep on truckin'.

[vbeachy]

@onojmai

Thank you!

[declanrwalsh]

Good to hear you are doing better

[vbeachy]

@declanrwalsh

Thank you!

[jamielynnp24]

Hi I just came across your video. I just spoke with my Neuro a couple of days ago and he wants to put me on Tysabri. I guess I have a cervical lesion now. He thinks Tysabri would be the best for me. However, just like everyone else, I am really concerned about PML. After doing research, it seems the benefits outweigh the risks, however, to me a 1 in 1000 chance is too high for me. I am trying to talk myself out of thinking of the PML, I just can't.

[driverr80]

Thanks for your depoiment, I wish you the best!

[vbeachy]

@driverr80

Thank you!

[etymon2]

Just ran across this and wanted to share some info I recently got from my neuro. (I know how hard it is sometimes to get such info.) We're now up to 31 cases of PML but I heard something reassuring also--Apparently fully HALF of PML cases were those who had previously taken some form of chemo for some amount of time. So, he said, if we rule those out, it's down to only a one in three thousand chance of getting it. He said three years should definitely be safe. I'm on (I think) my 15th infusion.

[vbeachy]

You know...I assumed it was something like that. I know there are risks, but, to me, it is so small and the benefits FAR outweigh those risks. I started Tysabri in November of 2006 and I am STILL walking very well.

[JQ73]

I like you am somewhat worried about P.M.L 37th infusion today but I too hv gotten better, so the odds don't seem bad to me. (I drive everyday in Houston) I believe those odds hv to be worse...... We'll be o.k!!

[vbeachy]

ABSOLUTELY!

[hayleywoodgate]

Hiya Vbeachy... my partner has MS and has her own blog about her use of tysabri in the UK. I have recently started a blog about living as a partner to someone with MS. I am hoping it's ok to post this video to my new blog so others can see the explanation relating to Tysabri and PML. If you are not happy with this or would like any other info please feel free to reply. Thanks

[vbeachy]

Absolutely you can post this video to your blog. I am more than happy to have you do that! Can you give me the address of your blog? Thanks!

[LuckyDigg]

I have been taking copaxone and will soon be changing to tysabri. It really is kind of scaring me but I want to take the chance anyway. Copaxone is not working well enough for me and I have hopes that tysabri will help me more. GOOD VIDEO BY THE WAY

[vbeachy]

Thanks Lucky. I certainly hope Tysabri does for you what it is doing for me!

[indwom]

I agree with you that the Tysabri infusions are worth the risk of PML. I have been on it alost two years, went through major back surgery alomost one year ago (no exacerbation after surgery). Personally, I will continue to take the infusions unless there is a much more significant increase in the cases of PML.

indwom

[vbeachy]

You are, indeed, a veteran user of Tysabri. I, too, keep a sharp eye out for any changes, but remain rather unconcerned because I know PML is extremely rare. Thanks JRL!

[3sandri3]

I take tysabri and will let others know about my progress. :)

[vbeachy]

Good for you. It is absolutely YOUR choice!

[MikaD78]

Hello, do you know my chance what would happen if I started Tysabri and just stop?

Thanks

[vbeachy]

I honestly have no idea, but thanks for asking. :)

[laurenvparrott]

Great video Vern! I totally agree with you!

[vbeachy]

Thanks Lauren!

[ferkulat]

nearly one in a thousand. and tysabri in the third year for me too. i take it further on.

[trapp2au]

Sometime in the future the researchers will find the reason that some people contract PML but in the mean time the risk is worth taking. I see my beautiful daughter leading a relatively normal life at the moment and she has such a great attitude towards this condition thanks to Tysabri. What more can I ask for.

[vbeachy]

I think the risk is worth taking and you put it beautifully.

[jermeal385]

great  video

[vbeachy]

Thanks Jermeal. :)

[angelusa73]

Dear Vern,

in Italy, people cannot take Tysabri longer than two years and, to me, this makes a lot of sense.

Everyone has to make their own decisions and I agree with you in this. I don't get paid by Biogen either and I feel that I should spread the word about the pros and cons on the medications. I definately will not take it longer than the 2 years but everyone has to make their own decision.

Thank you for sharing and I wish you the very best,

hugs

Angela

[vbeachy]

Angela;

I don't understand why people in Italy can't take Tysabri longer than two years. It seems to me that provision takes the decision away from the patient. I know I am not going to stop taking Tysabri because it has done SO much for me. I agree that everyone needs to make their own decisions and I sure wouldn't want the government to tell me I had to stop at a certain point.

Thanks Angela!

[angelusa73]

Dear Vern,

I should correct myself...It is the doctor and that the patient that will decide what to do but, after looking at research and at the risks, doctors don't support the use of Tysabri for longer than that, but they might support stopping the medicine, taking a break and making another decision then...We are just more cautious and I think that many doctors look at the risk and they think that it's not worth taking it for a longer time. I think they are concerned and scared about PML.

[vbeachy]

I understand their concerns, Angela. I can tell you that I am more concerned about the stories I have heard from a few people that were on Tysabri for a while, but stopped it after advice from their doctor and their disability went back downhill. I would be concerned that if I stopped it (yes, I've been on it for 37 months) I would regress again.

[angelusa73]

Yes, I heard about that too and that is not good at all.

I wonder what would happen if I would stop it too...

Let's take a day at the time, right? :)

Have a good evening and take good care,

Angela

[vbeachy]

One day at a time is all anyone can do...that's for sure.:)

[MSVlogSupport]

I agree with you 100%, each person has to way the risks and benefits for themselves. Out of all the drugs out there now it does have the best success rate, for reducing relapses.

What I don't understand is why it is used as a last resort drug?? Look what benefits you have gotten with it, what could it do for someone who has not progressed as far?? I would be willing to take the chance of PML if it meant I might not end up in a wheelchair, help with cognition etc.

My 2 cents.

[vbeachy]

Andrea;

I don't know why it is a last resort drug either. In MY opinion I think everyone who has MS should go on Tysabri. I think A LOT of MS patients would gladly take the risks if it means possibly avoiding a wheelchair. I think other people would have a hard time understanding why someone would take the risks of the drug unless they too have been in a wheelchair.

[wendell3308]

Lots of talk about risks, but you failed to remind MSers about your benefits. Were they:

wheelchair bound vs walking?

seeing blurry-double vs seeing fine?

brain fog vs thinking/remembering clearly?

taking a dozen of so drugs vs 1 with Ty monthly infusion?

what's missing?

[vbeachy]

That's true Wendell. ALL of those benefits. :)

[sandywatts500]

Well, I didn't know about the 2 new cases. In North America?

As a person on Tysabri (4th coming up!), and aware of the risks and benefits, I'm glad you posted this video.

And I know I will continue! After being on numerous treatments over 16 years, I have faith in its' efficacy and "relative safety".

Thanks.

Sandy

[sandywatts500]

and btw great pronunciation of "progressive...bla bla bla..." LOL

[vbeachy]

Did you catch my Australian accent too? (maybe it was just me. hehe)

[sandywatts500]

oh definitely! I'm sorry I forgot to mention that...crikey! hehehe...

Sandy

[vbeachy]

Thanks Sandy

[andie221]

Have faith. Those on Ty know about the potential risks and experience these positive changes we are seeing with Tysabri. Weigh up the risks vs this debilitating condition, personally I know what I'd be doing.

[vbeachy]

Yep, Andie: Faith. :)

[trosper]

i am getting ready to start tysabri. kinda worried bout the pml but tysabri is my last resort. ive been on rebif, copaxone and imuran and non have worked.

[vbeachy]

Hi Tommy;

I understand the concerns about Tysabri. I was on Avonex, Betaseron and Copaxone before (they did nothing to improve my condition) I started Tysabri. My life has improved 1,000% since then.