Tysabri and the risk of PML

[Sumpfhexchen]

After nearly three years with Tysabri I was tested positive on this JC-virus.

Now I'll get Fingolimod...

But the question was and still is: Will the risks stay?

[angelusa73]

@Sumpfhexchen I wasn't tasted for the PML virus because it wasn't offered to me at the time and I was also told that it wasn't a sure test because it was new and that it could have changed at any time...well, they were all wrong and they played withj my life and almost caused me to die, but I made new videos where I showed that I was stronger that the virus and that I won the battle, not an easy task to do and I hope that, if you can avoid taking this aweful drug. good luck to you,

Angela

[Sumpfhexchen]

@angelusa73 You're right. This test was new and I could only make it after 2 1/2 years with Tysabri. And then I was asked, if I want to go on with the therapy. :oP

The question is: Will the danger of PML stay after stopping the therapy?

I wish you the best!!!

[angelusa73]

@Sumpfhexchen I think that, for as long as people stay on the derug and continue to take it, the risk will be there but once you stop, the risk should go away.

Just remember you that, unfortunately, PML can be awonken by AIDS, cancer and it' aeful medications and other immune suppressent medicines or the by many other various disesases. I think that, if you stop taking Tysabri, the risk of you ever getting thePML will definately be even more rare and should be almost impossible. best of luck

[Sumpfhexchen]

@angelusa73 Thank you, no one gave me an answer except of you...

Keep on fighting!!!! WIsh you only the best!!!

[angelusa73]

@Sumpfhexchen I am glad I was able to help a little, even if I am not a doctor which I think it's better because I ca use my heart and not be clinical and cold like a fish... :) thank you for the wishes that I share with you, because I hope that only good things will come your way, now and forever. Thank you for writing and have a wonderful day,

warm hugs,

Angela

[0302isis]

Quick question if you don't mind. How many infusions did you have before pml was discovered? Thank you again for being such a blessing to me!

[gekiryudojo]

my heart Breaks that you now have PML :( this is so cruel

[gekiryudojo]

I pray for you Angelusa

[Kanny989]

I wish that people were made aware of CAMPATH,,, very similar to Tysabri but side effects that can easily be treated with drugs.. I have had Campath and havent had a relapse since.... (fingers crossed)

Wishing you well

Karen

[kkkkkkatherine]

Please MSers...research LOW DOSE NALTREXONE LDN...

many report it has HALTED their MS, is low cost AND effective...Please do it for YOU!

{ Prayers going up for your FULL recovery, sweet Angela!!! }

[OneManTagTeam]

Hi, I've just been diagnosed with MS & have had 2 relapses in as many months. The first relapse I had, the doctor thought it was labrynthitis as I had been really dizzy & sick.

The second time, I couldn't lift my left leg & my hands had the tingling sensation, so the doctor referred me to the neurologist.

A week later, I had a MRI scan & lumbar puncture which confirmed that I had MS as I had alot of lesions, and they think it's something I've had for quite a while.

Looking back, last Novembe

[angelusa73]

@OneManTagTeam Dear new friend,

finding out of having MS is never easy and you have been throught quite a lot. I saw the video of your wonderful wedding and of your beautiful love story and I know you will be strong and you will fight this! A year has gone by since you found out about your MS and now there is more hope in the MS world thanks to doctors that are trying to help us find a cure for it! I wish you and your loved one the very best! You will always be in my prayers!

Hugs

Angela

[Alexknobsob]

Thanks I need to hear this.

[angelusa73]

@Alexknobsob You are very welcome. I hope my words can help someone :)

Thank you for writing and have a nice weekend,

hugs

Angela

[balank4d]

I pray and hope the best for all of you taking or thinking about taking this drug.  Please consider strongly the risk of PML. I witnessed the past few months my close friend with PML and nobody wants to go through what I saw my friend go through.

[angelusa73]

@balank4d I would like to thank you so much for writing to me and telling me how concerned you are about Tysabri. It was a very difficult decision for me and doctors didn't give me any other choice. I plan and dream of stopping this drug in a couple of months. I wish we wouldn't have to take this dangerous drug and I hope with all my heart that your friend will fight and win the battle with PML. I pray for all MS patients and I keep a special place in my heart for everyone that is battling PML.

[laurenvparrott]

This is cool Angela! I love the music!

[angelusa73]

Hi Lauren! The music is italian...it comes from the cd of an italian singer called Nek.

I am glad you liked the music. I needed a song so I could present my first part of the video!

Talk to you soon!

Ciao,

Angela

[laurenvparrott]

Well of course I liked it...it was an italian singer!! I'll talk to you soon! Ciao!

[angelusa73]

Dear Sandy,

I am sure that every time we will hear about another case of PML we are all going to think about it and probably worry a bit, but I think that, most people are able to live their lives and be grateful for the good days that they get.

I do hope that, soon enough someone will come out with some way to stop PML from coming. I am glad that you are already seeing some good changes and I hope that you will see a lot more improvements in the near future!

I wish you the best

hugs

Angela

[HubertV2]

Cara Angela

That is right way of thinking and I am proud on you piccola bambina mia you are smart girl and you think in right way and that is good .

PML is strange thinkg that is so but ... who knows what will be so we have to live for this day and what will be in future only God know .

Primoz

[angelusa73]

Caro Primoz,

I am in Baltimore right now and I am ready to go and get my infusion. I didn't sleep all night and I thought that I could use some of my time answering e-mails and reading the many comments that people wrote to me :) I like using my time this way!

You know me so well, caro amico and you know that I take each day and I live it in the best way possible. It is quite hard sometimes, but we are strong and we can do it, right?

Have a good day and say hi to Slovenia for me :)

un bacio

[13Harms]

Hi Angela,

I really appreciate they way you tackle all sides of MS with such sensitivity. Tysabri is working well for me at this stage, but I do worry about staying on it long term. It's hard knowing that it's the only thing that has helped so far, but it has these risks attached. Fingers crossed that one day soon there will be something as effective without the danger.

Thanks again for another video,

H

[angelusa73]

Dear Harmony,

I am in Baltimore right now, in the hotel and tomorrow I will be getting my 10th Tysabri infusion. I do wish that we could have another medicine that would be just as effective without having so many side effects. It seems that the new MS drugs of the future might be just as hard on our bodies but we will have more choices...

I am so glad that Tysabri is working for you too and that is helping you in many ways.

Have a great day and I will say to Baltimore for you :)

Angela

[irishbear76]

Great video.

I really can appreciate how you try to help others.

You are a beautiful soul, a caring human being, and a real MS activist.

God bless,

Mark

[angelusa73]

Dear Mark,

wow, you made me blush!!!!!! :)

I don't know what to say! :)

Well, I am on my way to Baltimore right now where I will get Tysabri for the 10th time and I will think of you tomorrow...I do believe that good and happy thoughts go a long way and I am sure that your words will help me a lot, especially when my veins won't want to open up and let the medicine in!!!

Thank you so much for taking the time to write to me.

Have a nice day and take good care,

hugs

Angela

[cristinadreamer]

Dear Angela,

you're a wonderful human being,always thinking of others.You are helping so many people with this illness.

Thank you for sharing so much information and your sincere thoughts.You are helping every one of us(sickness or not) to understand the importance of life.

May the love and strength of God be with you!

[angelusa73]

Dear Cristina,

you are so sweet! You are always present at every step I take! :)

I meant to talk about Tysabri for the longest time but I wanted to try it on me before mentioning it to others and I didn't want to scare anyone talking about the many risks without sharing with others the benefits of taking this medicine.

Now, I feel that we have a full picture...yes, it is dangerous, but if we need it, we have to take it and believe that it will help us.

Thanks for your support!

Warm hugs

[vbeachy]

Hi Angela;

Great video and, yes, I look at the PML cases as more than just numbers...there are 24 people and 24 families affected by the disease.

The bottom line for me: I am out of a wheelchair, can walk without crutches, cognition and just "movement" is nearly back to "normal" (or before MS).

[angelusa73]

Dear Vern,

I do think that it's wonderful that this medication is helping so many of us in so many ways (I have improved a lot too) but I wanted to make sure that everyone would be aware of the risks involved in taking this medication. Knowledge is the best way to help people. In fact, it is thanks to you and Lauren that I learned so much about Tysabri :)

About caring...yes, we are very sensitive to the suffering of others and they are not just a number for us. We do feel for them and we care.

[angelusa73]

Thank you so much for coming and for listening to me and I am glad that you can see my point of view on Tysabri.

Take care and have a good evening,

Angela

[WithCourage2008]

Great video!! I too feel so sorry for the people who got PML. I also worry about the people who will get it next. It all does cross my mind often.

[angelusa73]

Dear Anna,

I feel that it's hard not to care about others and I do worry about the people that have to deal with PML and I do care about what is happening to them even if I don't know them personally.

I wish that no one should have to deal with something as serious as that infection...and as serious as MS.

But we are strong, right?

And we will make it through, dear Anna!

Hugs,

Angela

[WithCourage2008]

I also believe we will make it =) Then we will look back at the hard times and wonder how we were able to do it.

Hugs!

[MSVlogSupport]

Another great video Angela.

[angelusa73]

Thank you, dear Andrea.

I saw that Vern made a video about PML too so, maybe, this could be another great subject for your MS blog/forum.

Just an idea...

Hugs,

Angela