I still think the odds are in our favor if in the U.S. They are still in the 1/1000 even in the 24-36 month range which is the highest of pml cases. Of the 6 new cases one was in the U.S. I'm pretty sure that in the 3-4 year range there have been 4 pml cases (U.S.) but the unknown is how many have been on Ty that long... I do not know why they don't have this figure. My guess is more than 4,000...
I have done my counts from chefarztfrau info and gotten other info from Biogen.

Linda

I really beg you - can we not get off this PML discussion. This is no longer a ty thread but a PML one. Mods should be alerted another thread is needed if this continues ( and it will ).
I so miss the many ty users from 1-2 years ago. They are not dead! They moved on due to such as this. There was fun, updates, general questions, concern for friends.... we cared and we had many new ty users. Any new ones here??????????

We are very lucky to still have River - one of the very few who drops in to help and give up dates. Yes, on any subject. Sorry, but the only older name I recall. I also recall River's advise then as now to be the best.

Enough said - if anyone still cares or wants to know

#26 is down - major bruise ( 2 weeks+). I've never had a bruise before so very unhappy. I have poor veins but all others made it by my rules. If it rolls go to another... this nurse would not so,,,

Guys - I no not want a sorry - I could careless. Please move the tons of PML to a different area. I would like to see new or prospective users here, I would lov to see many ty users here. We can have them.

Do you want then mods????? Looking like you don't. Sorry

Hi Pink,
I'm sorry if the discussion of PML seems irrelevant to you on the Tysabri thread. I know it can be scary. I've been in the forum since April 2008, started taking Tysabri in July 2008 and this is really the only place I come for up to date info on the drug. I pretty much trust what I get here because I know the people in this Tysabri forum do their research. Unfortunately, I don't think you can talk about Tysabri without talking about PML. I like to keep abreast of the risk factors so I can keep reassessing my choices. I find the recent reports of people going to get tested for the JC virus antibody to be exciting and promising. I wish everyone the best. I still come and report on my infusion #s as it seems others do too and find there are useful questions/check-ins about side effects and what to do with them. The PML rates are higher in Europe than in the US and that gives me some hope it is less riskier for Americans. The antibody assay gives me hope too. Good luck Pink--hope you are feeling better soon.

Hi Pink,

I'm sorry to hear that the nurse didn't follow your instructions. We know our veins better than they do!!!!!!!!!!!!!!!!! Perhaps next time you'll have a different nurse. I don't mind the bruising as much as I do the occasional small blood clot that I get if the needle wasn't inserted properly. But, they all disappear within a reasonable amount of time.

I have #34 coming up on Friday. Tomorrow will be the beginning of my "butterflies in the stomach" time. It's so strange to say that after so many infusions I still get a bit nervous until the needle has been inserted successfully. So, I begin to worry a bit the day before the infusion. I even hold my breath so that I don't accidentally move my arm during the needle's insertion. One nurse actually begged me to "Please breath.....this may take a bit of time and I don't want you to pass out"......rofl I always feel better when I arrive at the infusion center if I see an infusion nurse that I recognize. I hate breaking in a new nurse!!!!!!!!!!!

hugs,
Shayna

Hey everyone!
Sorry I haven't been here much lately. It's been a busy month or three! Get ready because this is going to be LONG!

I'm dealing with the man's major foot injury, trying to keep him from damaging it further. He's got a Charcot fracture of his left foot (diabetes related) and he is determined to aggravate the injury until it has to be amputated, or so it seems to me. Short of tying him down to the couch while I sleep, I've taken to threatening his friends and him with severe consequences. It's another 300 mile trip to the foot specialist tomorrow morning and I am hoping that the doc tells him to knock it off and stay off the foot! I'd almost welcome the surgery with the 4-6 month recovery right about now just to get him to stop messing around with his health!

As for me, still no problems and no concerns. I go for the blood draw for the Stratify2 assay next week. There's 4 of us being drawn in one day, and as usual, I am the first. The samples will be sent out that day and results are expected back in 4-6 weeks, although they may come back sooner. Either way, I will have # 41 before I find out results.

Leggz-How'd the MRI's go? This can't be easy for you, having to go through all this. I hate when I hear stories like yours. I have no experience with the problems you are having but I know it's got to be wearing on you! Let us know how it turns out!

Shayna- you made me laugh with the "holding your breath" thing! I used to do the same thing until I was sure that I didn't have hackers for nursing staff! I find it much easier to deal with all this when I can laugh with the nurses rather than fear what they are doing.

Pink- Sorry to hear about the bruises. I don't have to deal with nurses that don't listen, I am using a very small oncology center for infusions and there are only 6 nurses. I always get one of the four who were there when I started. They used me to train the two new ones in procedure but one of the original ladies does the start every time, I think because they feel as if I am "theirs" and they want information from me about what is happening with Tysabri.

As far as PML talk goes, there are many of us entering the "unknown zone" where they say you are becoming more susceptible to PML. This is uncharted territory. As you get more infusions, you enter a smaller and smaller group because many folks drop out before they enter that zone.

I know my group (40+ infusions) is < 5000 people right now. Linda's (grammie 2.0) group is even smaller ( < 3000), so when there's a PML case in her group, it makes it look like the sky is falling, even though in the big picture it's only one case, and that makes people take notice. Discussions begin and rumor is started and corrected, fears are voiced and support is given. That's why we are here.

The folks who follow us will benefit from our experience and we have to talk about it. Occasionally you will see others who are not on Tysabri offer their opinion and while their opinion is heard, they do not have the same experience as we do and therefore do not carry the same weight.

At this point, while I watch the numbers and read all the data and studies and information coming from all official channels, I pick and choose what I post based on supporting others. PML is there and we know this. As time goes on it has increased, as it is expected to do until they figure out how to minimize the risk. I've been involved in the whole Tysabri party for over 6 years now, and I cannot WAIT for the day when the big heads can say "This is what causes it and this is how we fight it" or even better "Here's the vaccine" when it comes to PML.

I'm tired. I'm tired of fighting and I'm tired of worrying and I'm tired of false information being left uncorrected by Biogen. While they are doing better than when they first started, there's a lot of road left for them to repair. I've written hundreds of letters, talked to more people than I can remember, been abused and put down by people who I don't know and who don't know me, and met some of the nicest people in the world, who are now some of my closest friends, all because of Tysabri.

We wouldn't be credible if we brushed off PML in our discussions. People would suspect us of hiding information or making light of the risks. We are also here to make sure people understand the benefits. Sometimes it seems that the information we post slants in one way or the other, but it's all relevant.

I hope everyone is doing well and taking SOME pleasure in the beautiful weather! It's SUMMERTIME! Get outside and enjoy at least a part of the day!

(I don't mind hot and sticky, cooling down is easier than heating for me! I flick on the AC or jump in the lake! Heating takes wood and all the work that goes with it when you heat with a woodstove!)

Pink, excuse me but i thought that the ty thread was to discuss ty? if you want to discuss the "good" you need to discuss the "bad"(which includes pml, bruising etc)as well to truly be informative.

MY 1ST TY INFUSION SCHEDULED NEXT WEEK.

Back in early December 2009 I had my 6 month check up and MRI after starting on Copaxone. I had been noticing quite a bit of changes during that 6 months, and none of them were positive, not to mention I had quite a significant episode in October 09, which turned out to be a pretty good round of Optic Neuritis....and three days of 1,000 mg each. The 'roids' did help with the ON and fatigue, however it took me a couple of months to re-coup from taking the large dose. When I had my MRI in December, it wasn't a big surprise when we discovered that my CNS was 'lit up like a christmas tree'....over two dozen new and active lesions. Then we had to make a decision, do I try the interferons or do I go to Tysabri? I chose the Tysabri route since I knew that with the interferons I had a significant risk of going into a deeper depression than I was already dealing with....for years by that point. With my family backing up my decision, I chose Tysabri. My first Ty infusion was on January 15, 2010. Each month since, I am noticing a change in how I am feeling. By Ty #3 I was really noticing the improvement in my cognitive abilities and it has only gotten better each month.

On June 21st I had my 6 month MRI and check up with my Neuro, and what an absolute relief it was when I was told that there were ZERO new OR Active lesions on my MRI!! I am absolutely amazed what a difference this treatment made for me! I am actually catching myself saying something that resembles someone with a brain! I am more than excited about my results and am breathing a bit easier knowing that the MS progression seems to be halting or at least slowing down. From December 2008 to December 2009 I had so many new and active lesions that I was just waiting for the bomb to drop...meaning I was feeling like I was bound to have a lesion pop up in a bad spot and that I could be stopped in my tracks. Learning that the Tysabri is doing exactly what it is supposed to do is such a relief!! I feel like I can finally take a deep breath and let go of the constant, nagging worry that was always on my mind. I couldn't help thinking about the "what if's" and now I am thinking more on the lines of "what can I accomplish next?" "What Challange do I want to tackle today?"

I feel so lucky to have had a 'choice' to try the Tysabri......I just pray that this isnt just a honeymoon period, because I am feeling better than I ever remember feeling before.....I think this monster we call MS had been slowly taking me over and now I feel as though I am fighting against the monster and am gaining ground each and every day....Thank you Dr. Parry, this is changing my life.

mibishe-Good Luck! Remember to drink plenty of fluids before the infusion so they can hit a nice juicy fat vein. Bring something to read or do during the infusion. Relax and please let us know how it goes!

amyblake_ YAY!!! Isn't it wonderful? I had the same experience, seeing MRI after MRI that showed more and more lesions and knowing that my brain was failing me slowly. I have two cousins with MS and could se where it was all going and I seemed to be on a steeper, slippery slope than they were with things going downhill fast.

To see that 6 month MRI after starting Tysabri and hear the words-no new lesions, no enhancing lesions, larger lesions are smaller and some have disappeared will always stay with me. I cried. I still cry when I get home after new MRI results are in, and I hear the same words again. I still wait, holding my breath every time, to hear the words. So far, so good! I'm happy to hear that you are having excellent results!

amyblake - So happy for you. Many many congrats!!!!! I had my 1st mri after only 4mos on TY and all had gone to inactive. I will never forget how that felt. I had hope! It was so great; I have no words to express. In the 1st 4mos ty gave me back my ability to walk, in the following 4 months it gave me back my felling in my upper leg. I was back 100% from my 1st flare. The Drs said that would never happen. I doubt your having a "honeymoon period". I think you are seeing what ty can do. Enjoy it my friend!!!!!

mibishe - Best wishes on your 1st infusion. I'm sure it will be a breeze. Do as River stated and lots of fluids to help your veins be large. You will be there for atleast 2 hours so a book or laptop (if they have wireless) is a must. If your a bit sleepy after then-no worry. Many of us are. Go tuck your self in bed and get some rest for a few hours. Please let us know how it goes.

shayna - thanks so much - yes "butterflies" here too and very nervous, I start worrying a week ahead. I do it all for nothing much; I use to not till last Oct when I had a more then terrible experience with my GP needing blood out of both arms. I won't go there again; just thank you!

Riverwild & Natalie8 - yes, I agree. I understand your points and please accept my apology. I stand corrected. I think I am just tired of it all and having to justify to the world why I remain on TY. I remain on TY b/c it works better then any other drug for me. I have some problems most do not have due to other medical issues, but it is the best for me. All the PML talk just makes for more pressure, however that is not the fault of this forum. Again, my apologies.

I wish you all the best - time for #27 this week.

Pink,
Good Luck with # 27!

I agree with you. Tysabri works for me and it works amazingly well.
I also agree that PML is a scary side effect and it's also a worrisome subject for a lot of us.
I know I am hoping that the assay clears up a lot of the worries!