Tysabri Recovery Series - Angela and PML

[markolad]

My doctor asked me the same about taking a 6 month drug holiday but for me the benefits I've got from Tysabri far out weigh the risks I think If you've gone through the worst of what ms can throw at you you'd risk anything I know I would no matter what the risks where. And in a way its made my choice to carry on with Tysabri easy knowing how bad life was before. But as you said everyones different and its there choice.

[vbeachy]

@markolad

So true, Mark.

[markolad]

Hi Vern, I'm going next week for my 35th infusion will I hope I am I'm just getting over the Shingles but I just wanted to say I like your way of thinking I'm singing from the same sheet I to was in a wheelchair and was relapsing every 5 or 6 weeks till I started Tysabri I've been relapse free since August 2008 and I can walk without any aids and my ms is stable now I was asked to think about stopping it or taking it every other month but I'm more scared of stopping than PML :) Mark.

[vbeachy]

@markolad

Me too, Mark. I know my doctor asked me if I wanted to take a drug holiday, but I am doing so well on Tysabri that I don't want to stop. I think the risk of PML is so miniscule that the benefits far outweigh those risks.

[qualisarx]

If you are consinsidering taking Tysabri their is a blood test to see if there is a major risk as per Norm #53

[ThePennygirl]

Life is a gift ! Bet now 17

[MrMDM2007]

Hi Vern,

I've been on Tysabri since early this year, and will not change to another medicine either. I've never felt (since my dx) as good as I've felt on Tysabri not to mention NOT having to deal with ANY shots and bad side effects.

Thanks as always.

Dave

[vbeachy]

@MrMDM2007

Hi Dave! Glad to hear it and, I agree, NOT having to deal with shots or bad side effects is HUGE in my book. :)

[kfoulk]

I am going for my 49th infusion of Tysabri next week. I am a healthy 40 year old. i do not drink or smoke. I work out at a gym 4-5 times a week to stay strong and healthy. The only bad thing I drink is diet coke..not quitting that.. No special diet, just try and eat healthy and stay healthy. I have 2 children age 9 and 6. This is response to wendell3308. I have videos of me, but its just me being crazy me. Not MS related. Oh I also had CCSVI done Aug 2010, some improvements.

[vbeachy]

@kfoulk

Good for you! I need to get more exercise, especially with the colder weather setting in.

[ThePennygirl]

I just don't see how PML is worth the risk! SORRY but my NEAR....death from it! gave me nothing but months of pain, confusion,  and more symptoms then before starting Tysabri! I FEEL SPARED! and they sent me a bill!! FOR SAVING MY LIFE!

$979.83 AHA MUST BE A TYPO? I hope so! I don't have funds for this! Good Luck and best!

AM not paying a RED CENT TO BIOGEN!

[vbeachy]

@ThePennygirl

I am sorry to hear that, but I still think Tysabri is worth the risk for me. 

[vrocavesna]

@ThePennygirl

I'm 32 years old, and in my case MS start to go very fast these last year, no Betaseron, Copaxone - nothing helped. I'm a gambler. I belive that will Tysabri work for me. It worty risk. It so little cases of PML.

You can die too if you eat any other pill or have bad side effects.

[wendell3308]

I just wish more long term Tysabri posters might comment on their particular diet or lifestyle. Sometimes viral infections can be helped by the silliest of things like calcium supplements or suppressed by the caffeine in coffee or the flavonoid genistein in soy.

Here's my toast & best wishes to A's speedy recovery !

[vbeachy]

@wendell3308

Me too Wendell!

[laurenvparrott]

Great job Vern - Thank you so much for making this video!!

[vbeachy]

@laurenvparrott

Thanks Lauren!

[65cancer]

Hi Vern,

That’s really a great video !!

Some people it helps and the same stuff is worth for other. Why or Wherefore ?? Nobody know it ??

Everybody have to figure out what’s the best for him self, you can grasp tips and tricks from other.

But you must decide by you’re self if it works for you or not !

See ya

Rudi

[vbeachy]

@65cancer

Thanks Rudi!

[cruchinet]

i don´t know what to say, i´m so happy what Tysabri has done and is doing for me but i think of her a lot if have no words...

[vbeachy]

@cruchinet

It is difficult Janett.

[jayoatru]

i really don't know, but it seems like however people go about treating their MS, they face some tough decisions, invariably. there are risks in taking bold approaches... but then being really cautious may be a gamble too, it seems.

plus, everyone is different and at a different " place ".

anyway, i am sorry your friend has PML and i wish her the kindest luck possible.

as always, your honesty and thoughtfulness is really cool.

[vbeachy]

@jayoatru

Thanks Jay. I think it will always be up to each person to decide what is best for themselves by weighing the risks and benefits.

[christinedavi]

best wishes to you, Angela and all of us who have to make tough choices.

[vbeachy]

@christinedavi

Thanks Christine. :)

[lovingfatalist]

Thanks Vern, I was wondering what you'd say about this. Your account here is considerate and balanced, as ever. Of course Angela's PML is upsetting news, but it doesn't in any way discount the success you've so clearly had with Tysabri.

[vbeachy]

@lovingfatalist

Thank you Toby...I appreciate your comments (as usual). :)

[WithCourage2008]

Vern, thanks for the video. I can't believe Angela got PML! How could such a great person be treated so unfairly :( How could she get it after her 22nd infusion? That is so early!! I heard that a very small % of people get it before 2 years on the drug. Our thoughts and prayer go out to her! Tysabri has kept me in remission for 1 year and 3 months. TY and Ampyra have given me a lot of my life back! I can almost run! Now I am starting to seriously rethink things though... :(

[vbeachy]

@WithCourage2008

I know, Anna, it is sad that she got PML. Yes, people mainly get it after they have been on the drug longer than two years. Tysabri is risky but it has allowed me to walk and kept me in remission for almost four years. I tried to run recently but, sadly, I still cannot. Best of luck to you Anna and I miss your videos!

[WithCourage2008]

@vbeachy I promise I will make one as soon as I get a new camera! That has been on the to do list for a long time, but I just had other priorities (like paying off my medical bills and my car). Looks like I am in good shape now so it's time to get the camera! I would love to share my experiences with Ampyra in my next video. I miss making video myself :)

[missalgernon]

Thanks Vern, I needed to hear that. Like everyone, I've been very very upset about Angela. And I feel like I'm walking a tightrope, on one side PML, and the other going back to how I was, or worse. I want to stop. But the 'rebound' effect can be a bigger risk, and not to be ignored. I hope someone makes a video about that, I don't think I have the strength (or the followers) to do it myself.

[vbeachy]

@missalgernon

Hi Amanda;

Yes, Angela's case is very upsetting and the rebound effect can be quite an intimidating factor.

Trust me, Amanda, YOU have a lot of followers, at least here on this forum.

[auntoni51]

I agree with you Vern.....and i think it is the perfect thing to say that how decisions whether to or not have medicines or procedures is up to each one of us.We all have so much to deal with just having MS to begin with..Weighing the risks can be such a hard decision for us all..my heart, thoughts, and prayers are with Angela and Keith.i have decided to stop tysabri and will be making a video shortly about it..I am SO happy for what tysabri has done for you, my friend..GOD bless you ione marie

[vbeachy]

@auntoni51

Thank you Ione and I know whatever decision you make it will be best for you. :)

[MSVlogSupport]

HI Vern, Those of us that know you also know that you are only speaking for yourself. I have always said that any drug you choose is a personal choice and I am very happy for you and the others that it does work for. Just like you said the disease is so different for all of us, so the drugs that work will be the same.

It is up to each person to do their own research and make their own decision.  I know that you care about Angela like all of us do. I wish you continued success!

[vbeachy]

@MSVlogSupport

Thank you Andrea. I am also curious how you are doing and am hoping for the best for you.

[MSVlogSupport]

@vbeachy I am starting so see some improvements! Going to give it another month before I make an update video, to see if it keeps improving and if I can actually show it on video.

[vbeachy]

@MSVlogSupport

Looking forward to your next video Andrea!

[omexmc80]

As long as its makes you feel better (which it has) then i dont see why not continue.. Everything comes with fall backs and risks and we are wise enough to make our own desisions..

[vbeachy]

@omexmc80

Thanks Omario!

[donotconcede]

Thank you so much Vern. I truly adore you. Thank you for doing this video. Vern I want you to know I support you very very much. You are a beautiful person. I hope you know I meant what I said about us all being in this together and I love every single person in my MS family. I do think MUCH more research on CCSVI to find out "how" CCSVI works to find out why some people don't have improvements. I do adore you. You are very respected by me and so many. hugs, Judy

[vbeachy]

@donotconcede

Hi Judy...I fully believe, and have always thought, you say exactly what you mean. It is a very individual decision and, from what I know, those with MS do a lot of research into the condition and drugs and procedures. Thank you very much Judy!

[irishbear76]

I had the Liberation Procedure.

Although I consider it safe, there is always a chance for complications.

For example, if they rupture your jugular vein, you are screwed.

I took that chance even having two small children.

It is about QUALITY of life not QUANTITY.

I weighed the potential risks with the possible benefits.

Thank God I did it.

I want you (and every other patient) to be well and safe.

People with MS are not stupid. We can make informed decisions.

I pray for Angela daily

[vbeachy]

@irishbear76

AMEN Mark! God Bless you and I certainly wish you continued success!

[zekest]

@irishbear76 Where did you go for your ccsvi procedure? I heard it cost 17,000 to fly to Italy and have it done. Help me out. Thanks, Jon from Ohio