Hi Linda,

I'm not a subscriber and so can't read the entire article. However, I found the Nasdaq article that the Wall Street Journal seems to have got its information from. I hope it's all right to post excerpts from it here:

http://www.nasdaq.com/aspx/stock-mar...11-as-of-may-6

Thanks agate :hug:
I do know about the informal website and go there daily to see if they have more info on the last cases of pml. So doggone frustrating :(
Linda

Well I'm sitting here getting infusion #21! It's hard to believe it's been almost 2 years. I'm still on the every 8 week cycle and I haven't noticed any difference except maybe the vision in my left eye gets a little blurrier by the end of the 8 weeks. They renovated the infusion room and added new chairs which aren't as comfortable :(. But I'm settled in with my pillow and blanket and looking forward to a nap. I kept the box and look forward to reading the new insert to see what exactly has changed. Hope everyone else is doing well.

The informal website has been updated; 52 pml cases (19 U.S.) and the doses are now posted.
Linda

I am so glad I didn't check in here before my infusion this morning. Seeing the number increasing tends to lead to anxiety before the infusion.

SO, all went well today once they finally got the meds. The did the labs and hooked up the IV and it took them almost 2 hours to get the hospital pharmacy to send up the TY. Apparently there was some mix up and we had to wait for the new shipment to be unloaded from the dock...ugh. anyways, the pharmacy manager came up personally to apologize and she brought me some very pretty peach and red hybrid roses. Which was very nice. They also included lunch with the wait.

Feeling drained as usual, but at least no other yucky symptoms, aside from the blurred vision that showed up in my right eye on the way home. One more to go and we will go in for another MRI to see if it is trying to improve. Kind of funny though, i am on antibiotics to treat the uti from the last infusion.

Hi Linda,
I haven't seen any more than 49 cases mentioned anywhere else. It's entirely possible that the informal Website has information nobody else has, but until I see it in a more mainstream source, I would wonder about those figures.

I had infusion # 39 yesterday, with no problems and no concerns.

It was also my third anniversary since I started Tysabri. I've missed one infusion. Since I started I haven't had a relapse. My MRI showed no new lesions, no enhancing lesions. My doc said I am among the 34% who show no clinical signs of disease activity. I have no signs or symptoms except for the lingering spasticity and fatigue.
My MRI report said that the MRI was "unremarkable". It's the only time I have liked being unremarkable!

The assay is in the works. He says he should have it in hand in 2 weeks. He says that everyone who is tested will have to listen to the informed consent speech, and the informational speech, but that the assay is a simple blood draw and that results will be available in 4-6 weeks and that they WILL be releasing the results to the neurologists. He says that the test has a supposed 2% false negative result at this time and that those who test negative will be retested in six months.

I for one am looking forward to being tested so I can move forward with my choice of treatment. Here's hoping that all of us who are tested come out negative!!

I hope everyone's doing well!!

Hi RW -- That's great news on all fronts. Congrats on #39 and the lesion free MRI's and relapse free life. Unremarkable is wonderful!

So your neuro says he will have the assay in hand in 2 weeks? Does that mean anyone can be tested, even those not participating in any of the trials for the assay? I wrote to my research nurse to ask about it but haven't heard back. If I'm a negative I will stay on it. If I'm positive (or no news) I am heading toward Gilenia (fingolimod).

I am hoping many of us have negative results too. :)

Natalie,
According to my doc he had to apply to be a testing site. He wants to do all his draws on the same day so he can send them all out at the same time, but that is due to costs for shipping, since they have to be shipped according to specs. He applied for all his Tysabri patients. He has a number of people who he monitors, because MS is his specialty and because a lot of other docs send their patients here for infusions, and he takes over when they start as he is the doc associated with this hospital. In addition, we are in a very rural area and for many people this infusion center is the closest to them. I was amazed at the number of people who are being infused here now. I spoke with the nurses while I was there and they said they have grown in numbers over the last few months. He said he will release the results to those who want to know and if the patient doesn't want to know, they will know anyway if they test positive since he will be taking them off Tysabri and steering them towards one of the others drugs available.
I know that if I test positive, I will be off Tysabri. We didn't discuss what would happen after that, whether I would be on a drug holiday or off completely and I don't want to know until the results are in. I prefer to wait and see what comes of the testing.

I suppose i have to start doing homework again on the new drugs. I am not looking forward to that and I figure if I am positive, I'll deal with it then. I want to enjoy my summer without having to read scientific journals and textbooks and studies!!!

I just heard from the research nurse at my MS clinic. They will be doing the antibody assay testing. She is waiting on approvals and as soon as she gets that they will call patients in to give blood. My plan was to drop Tysabri after the next infusion in July (#22), wait a few months until it clears from my system, and then go on Fingolimod (now called Gilenia) which I'm hoping is out by Fall. However, if I test negative on the assay I think I would probably stay on Tysabri. Thank god there are new medications on the horizon, though!!

Maybe the holiday is over...?
 

I had my 36th and last Ty infusion in October 2009. My neuro and I agreed to stop Ty because the 'adverse effect' information released by Biogen had ceased. We could no longer make an informed, educated decision to stay on Ty. I had done very, very well on Ty, to the point that most days I almost forgot I had MS!

I started Copaxone at the end of December. I had no complaints or issues with the daily injection. Thank God for the auto-injector!

I had my 6 month follow up MRI last Monday. The neuro called me on Thursday to say he needed to see me "sooner rather than later". Seems as though my MRI is lit up like a Christmas tree again- new lesions, many enhancing, a lot of disease activity. My MRI was very active in the first 2 years after my 2005 diagnosis.

So, he wants to talk about going back on Tysabri.

I'm a little freaked out about the whole thing. I was so hoping that the Copaxone would keep my disease activity in check.

Do I risk PML and feel oh so better? Does the # of infusions count start over because I have been off of Ty for 6+ months? Do I refuse Ty and continue down the slippery slope of progression?

Any advice or suggestions are appreciated.

I meet with the neuro today at 1 o'clock. Please wish me luck and send good vibes my way.

Be well,
__________________

I'm sorry I didn't get here in time to answer this because I had this discussion with my neuro last week when we talked about the assay and what he would do for those who test positive. My doc said he envisioned people going on and off Tysabri as needed, that your system clears it naturally and that his patients are back to normal immune status within 90 days at most, so theoretically, you could go back on after drug holiday with good results. He said that he hasn't seen any one of his patients who chose a drug holiday have antibodies when they returned to Tysabri but that it could be a concern for some.

Is your doc involved in the assay testing?

If you are looking for personal opinions, if it was me and I had been off for 6 months and saw the same results, I'd be back on Tysabri in a heartbeat. I'd also consider doing infusions on a longer time frame, maybe every six or eight weeks as opposed to every four weeks. I am not hung up on time anymore, since I know that the every four week schedule is just what they tested, and that a longer time frame may work well for some of us.

Let us know what happened will you? I'm pulling for you!:hug:

Oh the many reason I hate this stupid disease. So I was on antibiotics for a UTI (ps, caused by the TY I am told) when I went in for my infusion last week. The infusion seems to have washed out the Avelox from my system. UTI is still there and the sinus infection I thought I had that started the day after the infusion...nope, it's strep throat. I don't know if that wsa from the infusion or from being in the hospital all day for the infusion. I was there for 5 hours. This doth sucketh!

I'll have #33 tomorrow. I've spent the last few weeks trying not to think about PML. My neuro told me she will be involved in the assay testing but she doesn't know when it will begin. She said that as soon as she knows anything her office staff will begin calling those of us who want to be tested. I can't imagine being on Ty and not wanting to be tested. But, until I have the test and hear my results I'm "sticking" with Ty...please forgive the pun :) If my results are positive I'll cry!!!!!!!!!!!!!!!!!! I love what Ty has done for my QOL. My life will never be the same as it was prior to my last exacerbation 6 years ago but Ty has made a huge difference.

For me...at this time..ignorance is bliss. Until I'm told that PML is a possibility or I have an adverse reaction I'm going for my infusion every 4 weeks and I'm trying not to worry. I wish every 6 weeks had worked for me but it didn't.

My youngest grandchild called this morning. Her 4th b'day was a few days ago. She wanted to know when we would be coming to California so she can have her b'day party :) I told her I'm going for my "special medicine" tomorrow and that her grandfather and I would be there in a few days. The children understand how important this medication is for me. They've seen the difference....I can now walk, run with them, go up and down stairs and play with them for hours at a time :) They love my "special medicine".

I decided to check on PML updates this morning and except for that 1 site all of the other information states there have been 49 cases of PML. Since my DH hasn't said anything about new PML cases I'm going with 49 cases. He doesn't believe that ignorance is bliss...LOL

I hope everyone is doing well and that we all test negative.

Hi Krohe,

How did the meeting with your neuro go?????? Have you decided on what you will do next????? This is a very personal decision. I can only tell you that if it were me I would get an infusion of Ty immediately. But, for me quality of life is so much more important than quantity. I'm 63 years old and once I was finally diagnosed we were able to trace my m.s. back to when I was in college.

I'm sending lots of good vibes your way, keeping my fingers crossed for you and sending you lots of hugs!!!!!!!!!!!!!!!

{{{{{{{{{{Krohe}}}}}}}}}}

Hi, newbie here, been on Tysabri 18 months, diagnosed 06. Just now I'm on steroids for first time since starting Ty, two days now, and I swear if anything I'm worse. I'm having trouble finding clear info about differentiating between MS relapse and PML; is it really almost impossible to tell for weeks? Difference seems to be only if you've got optic neuritis or it's fast onset, then definitely MS? An MRI a week ago showed active lesion in brain stem and I'd been having symptoms for a few weeks, steadily increasing all this time. Anyone have any similar experiences or knowledge could help me out? I'd so appreciate that.
But prior, I'd improved dramatically and rapidly after starting Ty--especially cognitively, an area which I'd been hit hard in (my neuro sez about a quarter of MS-ers are hit hard that way, as I am).

Hi WordWarriorMama and welcome to NeuroTalk!
We're sorry that you have a reason to be here but happy to meet you!
I'm also sorry to hear that you are in a relapse. It has to suck after being relapse free for so long.

Now down to business. I'm not a doctor. The only thing I can tell you is to talk to your neuro at length. Ask why he/she thinks you are in relapse and that it is not PML. While most neurologists look at the MRI report, a lot of them do not look at the actual MRI. I would hope that your neuro would have done this since you are a patient on Tysabri. Ask if the radiologist who read the MRI has experience in PML lesions and their presentation on MRI as opposed to MS lesions.

Perhaps you could give the radiologist a call and talk to them directly just to reassure yourself. I did this with the chief radiologist at my medical center and he gave me a crash course in the difference between MS lesions and PML lesions and their presentation, and it made me feel a whole lot more secure in that he knew what he was looking for and more importantly, WHY that was important when it comes to Tysabri patients. There is usually a difference between the two types of lesions and a radiologist can explain the difference. At one time, the medical community thought that all PML lesions were non-enhancing but that has proven to be false and it's important for a radiologist to know what they are looking for.

You don't say when your last infusion was. Did you skip the last infusion or have it? Were you feeling as if this was started before your last infusion? Did you talk to your neuro as soon as you noticed a change? Has your neuro talked to you about the JCV assay that is coming out?

I know I asked a lot of questions and that it's not easy to answer some of them when you are relapsing, sorry for that.:cool:

It's not unusual to feel worse before you feel better when in relapse and doing steroids. I know for me, the steroids always make me feel worse and it always took me a long time to see improvement even after doing the steroids. I haven't had a relapse since I started Tysabri but I know that there is always a chance that I will have a relapse since Tysabri is designed to reduce the number of relapses, not stop them entirely. I've almost forgotten what it's like to have a relapse, but not entirely. :(
You are correct in that a lot of us get hit cognitively, for me it was the cognitive stuff that irked me the most of all my symptoms and I don't want to go through that again!

I hope that you come through this ok and that you go on to have better days. Please let us know how it goes for you. We're all in this together, learning the process even after several years in many of our cases, so come back and let us know! We're pulling for you! :hug:

Hi Shayna (and all that have replied),

We (DH & I) met with the neuro on Monday and I am going back on Ty.

They promise us (and I believe them) that they will keep an ever vigilant eye on me and any "new or worsening symptoms" ;)

Their office is enrolled in he assay testing, so I will also be getting that as soon as possible.

In the meantime I continue to stab myself with Copaxone, which, according to the neuro, is better than nothing. I'll only need a 2 week break in between C and Ty.

I need to start the enrollment process all over again, so I am imaging it will be a month or so before I can have my first (37th?) infusion. According to the neuro the clock doesn't start over at "1", but is definitely less than 37.

He said that those of us that went on Ty shortly after its re-release are all trailblazers. He honestly admitted to not having all of the answers. (which I respect. That's better than giving me an answer that turns out to be false only to save his ego)

I asked about lengthening the time between infusions to 6 or 8 weeks and he was not in favor. Mostly because my MRI is so active and my symptoms are back with a vengeance. Maybe when I schedule I'll just tack a few extra days on, and go 30-35 days instead of 28.

I guess I'm just looking forward to (hopefully) feeling better before the summer is over. I have a lot of stuff going on in my life right now (selling our house, buying/building another, SSDI appeal process, etc.) that I will need all of the energy I can get.

Thanks for everyone's well wishes. I will keep you posted.

Be well,

Wishing you my best, Karen :hug:
I'm pretty sure if it were me I would start at every 28 days for a few months-when I first heard of Ty (almost 4 years ago) I read for best efficacy 28 days was the way to go. For almost a year now I go every 33-35 days-which means I get 2-3 less infusions a year.

Linda

I am sooo glad you came back to let us know what happened!
I agree with Linda, if I went on the holiday (doesn't that sound weird when talking about drugs?) I'd be back on the 28 day schedule.

When I said I wasn't hung up on time I should have qualified that statement, in that I have agreed to give the decision to my doctor as far as a drug holiday goes, because he IS the doctor. I wouldn't have been happy about it but I'd have done it. I so don't like it that I agreed very quietly once and never mentioned it again in hopes that he has forgotten!

Here's hoping that everything gets back to your "normal with Tysabri" normal!

I am surprised that you have to re-enroll. It was my understanding that once enrolled, you were always in, and that you had to restart but not go through the whole paper shuffle again. Maybe it was because you went over a certain amount of time...

(why can we never ever get a straight answer from Biogen????)

Riverwild, thanks for your oh so comprehensive reply. Don't worry about the questions. i'll respond as I can.

My neuro is head of the MS center in a large city and very busy. I've got an appt w/ him in a couple weeks but have to wait until then to really learn more. In meantime, I'm just back and forth w/ nurses (who often don't really know much). I trust his reading of MRI's. Usually just after I have them done I've got appt w/ him, pop up to his floor and see everything on his computer as he does. He "reads" the info while showing it to me, and the radiologist's report coming after always backs him up. But the nurse didn't/can't tell me WHY he doesn't think it's PML.

Strange, isn't it, that Biogen doesn't have a site with all this needed info and maybe even a site for patients to share info among themselves? :rolleyes:

Is it really true that they know the diff between MS and PML lesions? Cuz I couldn't find any good info like that anywhere. I know MS tends to be periventricular, but other than that?

My last infusion was exactly a week ago. I spoke w/ a nurse at the clinic beforehand and she presumably spoke with neuro before OK-ing it. It's just hard never knowing what's going on. And I guess I kinda assume nobody can truly tell me what's going on either? That it's all guesswork to a large extent?

But thanks for that info on steroids, how typical it is to worsen before improving. In past I've always improved almost immediately on them, so this is different for me in lots of ways. And I'm in process of doing a vid retrospective on my life just now so I get anxious that I won't even be able to get it done. Cuz if I do get PML I am not sticking around to be so severely disabled! I actually haven't even heard about the JCV assay. Did that just come out and is it proven reliable?

I so appreciate and concur about the difficulty of cognitive problems, which hits our very sense of who we are. My neuro sez that though most MS-ers are affected that way to some extent, only a quarter are hit in a major way. It takes me about ten times longer to do anything involving thinking and my brain even starts to literally HURT if I do it too long.

Again, thanks so much for your response! :)

WorldWarriorMama, welcome!!!!!!!! I'm sorry you're having a flare-up...but, you've come to a great place to get info and share experiences of living with our MonSter. I had infusion #33 yesterday so I hope I can make sense....I'm still a bit foggy. Don't expect Biogen to tell you anything they aren't forced to tell you :( They are more co-operative now because so many patients complained when Biogen stopped giving monthly updates.

My neuro has told me that a good radiologist can tell the difference between M.S. and PML lesions. I wish I could explain it but I don't remember so much of what she said that day :( The important thing for me was the fact that the lesions could be differentiated.

My neuro has told me to sit tight. She and any of her Ty patients who want to take part will be participating in the assay for PML. Her office will call me as soon as everything is ready......whatever that means....LOL But, from what I was told the blood test is quite reliable. Anyone who tests negative will be able to continue with the infusions and be retested every 4-6 months. If someone tests positive he/she will be taken off Ty. My neuro didn't know what would be done if a patient insisted on continuing with the infusions despite the risk of PML. I know that Ty has improved my QOL to the extent that I would hate to give up the infusions and revert back to the way I was before. There are somethings worse than death...although my family doesn't believe me. Being totally dependent on someone else, feeling like a vegetable, not being able to think straight and having difficulty communicating is not my idea of QOL.

Although I haven't had an exacerbation since I began my infusions when I did have my last exacerbation and received solumedrol I was very surprised that it took weeks for me to begin to feel better. I felt like I was getting worse daily. I didn't think the solumedrol had worked. It was actually a couple of months before I I had full use of my hands again. And, I went through months of PT and OT.

I hope Ty helps you WWM. Hang in there and don't give up. Also, ask your neuro about the blood test. It should be available soon. I know that sounds like "the check is in the mail" but it is true....everyone is talking about it. The nurses at my infusion center as well as the m.s. patients who all go to different neuros are so excited about it. Most of the patients at the infusion center are there for chemo. There are only 8 of us who are there for Ty.

I hope everyone has a wonderful weekend.

hugs to all,
Shayna

The way the radiologist explained it to me was that MS lesions are close to fluid and blood spaces and PML lesions are usually found in white matter NOT adjacent to those vessels and spaces. He also said MS lesions are usually oval in shape and PML lesions are irregularly shaped in most cases, and most of them do not enhance with gadolinium, but that is not always the case.

There are lots of images of PML lesions out there and the ones I have seen are scary, like the Blob eating a brain...:(

I was contacted by Biogen
 

Today I spoke with a rep who wanted to know if I would be interested in a Ty group that would want feedback from me, allow me to ask questions. I didn't see a downside so I am participating, she said it would be about 4 times a year. She did confirm 49 pml patients-19 in the U.S. and said 67,000 on Ty worldwide with 38,000 in the U.S. She told me that those of us who called in were the reason Biogen is now more forthcoming ... that the odds for those of us on Ty over 2 years the odds are still not more than 1/1000.

Just wanted to share :)
Linda
forgot to say I had #46 this morning :)

Yay for #46, Linda!

I'm glad to hear that you will be sharing your perspective, it's the patients who have been on this drug the longest that have the most to offer, both to the pharmas and to other patients, and the pharmas should be using those with experience who are willing to speak!

I'm also glad to hear that the reps are being more forthcoming. Just a year ago I had an argument with one of them, asking the woman how she could justify selling a drug that she couldn't back up with information that should be shared with patients before anyone else, information that she knew and that could make a difference in someone's mortality...she had no response, just looked horrified and kept spouting the party line. I truly felt bad for her because it was obvious that she wanted to speak and felt as if her job would be in jeopardy if she did.

I received my paperwork for the Stratify-2 study, filled it all out and dropped it all off, spoke with my doc and he said more than likely the blood draw would be next week sometime, with results due back in 4-6 weeks. I'm looking forward to the next step in our gaining information on this drug!

Linda, congrats on #46!! Whoohoo!

RW, I have my fingers crossed you will be negative. I hope we all will hit the negative jackpot. :)

I'm still waiting for them to get all their paperwork in order.

All I can say is, "Ditto"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I've never been so excited about a blood test before...LOL

hugs,
Shayna

More PML
 

I'm sure people have read this but I wanted to post the latest. As of June 7 there are now 55 cases of PML. 20 of the cases are in the United States. There have been 11 deaths. But as I understand it, more people in the U.S. are on Tysabri than elsewhere.

There have now been 24 cases reported since Jan. 12, giving an average rate of 4.8 per month. Hunter said this would imply a further 29 cases by the end of December, giving an estimated 84 PML cases by the end of 2010.

http://online.wsj.com/article/BT-CO-...atestheadlines

Most of the recent cases seem to be in people on Tysabri 3 years and longer.

http://chefarztfrau.de/?page_id=716

...and reporting from the other side of the coin...#40 down with no problems, no concerns! :)

Another infusion down yesterday. They forgot to do bloodwork again, only 2 blown veins. Aside from the usual exhaustion afterwards no problems. Still no improvement either. But I go monday and tuesday for more MRIs. If we see any new lesions or no significant improvement I am off to clinical trials.

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!)

my 1st post
 

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.

Infusion #6 last Friday.....
 

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. :Excited:

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. :):hug:

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!