Two new cases of PML in Tysabri

Oh dear. That really is a setback. I took Tys. twice before it was pulled in '05. I don't think I was on it long enough to know if it helped, but at least i didn't have any negative effects. I would love the convenience of it and would still consider taking it if my current treatment (Copax) no longer worked. Thanks, Art, for keeping us posted.

Marla Eglowstein, MIT '79

Does anyone know if the way Tysabri is administered in Europe is any different than here? I.e., do they give more/less drug, faster, more or less often?

RR

I don't think MS patients should view this as a setback. I've been taking Tysabri for a while now and it seems to have halted any NEW activity, which is not to say that I haven't had flare ups caused by previous MS damage. What hasn't been released, obviously, is the information checklist that Tysabri patients, at least in the U.S., are required to answer correctly before the drug is administered. Such as info about other prescriptions or other "meds" they're taking, any new flare ups, etc. Know I'm not pointing figers and my heart goes out to these patients, but my point here is that anyone using Tysabri really needs to be straight forward about everything that's going on with them before taking the treatment to avoid any known adverse interactions or "side effects" following treatment. Just like MS is multifactorial, so likely is the reason for these PML occurences.

I've been on Avonex for 6 years, and it seems that it's no longer doing the job for me. My neuro wants me to consider Tysabri, and now this comes out. I had made up my mind to swich, but now I'm not so sure.

I was on Tysabri for six months. I have had one lesion since dx in 2000. After six months on Tysabri, I now have 4. I have to have a repeat MRI in 5 more months. The research has shown that if you stop therapy early, there is an increase in lesions often. I am waiting to see what happens, not that I can do much. I am back to copaxone which had been no longer effective. I tried the interfurons, but did not tolerate them. I have still seen Tysabri work great for some.

I was on Avonex for many years and now on Tysabri for almost a year. Last month an MRI showed a large new enhancing lesion on my brain, so I was already trying to decide what to do. This will greatly influence my decision. I had such high hopes for my future with Tysabri too. It works wonders for some and I wouldn't expect them to stop, but it did not seem to be doing any better for me, and now it is definitely not worth the risk.

For me the drug has done wonders. But I live alone & plan on continuing to care for myself as long as possible. I now wonder if that will cause problems with my care.

Had MRI yesterday. Results should be back Monday. I'll make plans on whether to continue or not after I get results.

Hi all,

I try to remind everyone including myself that MS has a mind of it's own (no pun intended), as for the medications, NONE of them are a cure and it's still so questionable if it's the medication that is working when things get quiet, or is it just the natural course of your ms? MS, even in it's worst moments has moments of quiet..not necessarily a remission but where you just adapt to how it is, IF you are still getting attacks, it doesnt' always mean a new active lesion, sometimes it does, some people get attacks (like me) and never have active lesions, I never light up anymore (i'm progressive replapsing), some people have no lesions and are in wheel chairs and some people are with a ton of lesions (swiss cheese brains) and walking like nothing is wrong...this is why MS is so hard to treat/cure...there is one more monkey wrench to throw into this...WHERE your MS makes a world of difference...you can have lesions in parts of your brain and have no effects..have them somewhere else and you are a mess but then the other part of your brain will compensate for that damage and you will adjust. Now get lesions in your cervical cord and lower and wow a whole different disease all together...spinal cord disease is much more aggressive, much more progressive and doesn't really respond to meds well. So Tysabri, Avonex, Beta, Copaxone...all good drugs for what they are intendended to do IF caught early and for how long, is anyone's guess...again is it the DRUG working or just your course of disease??

Ask anyone or look at the replies above...we are all so different, yet the same, all with simular stories, what works for me won't work for you and visa versa and even on drugs I progress, is it the drug or my MS? IF they knew that, we'd have a cure or at least a much better treatment!

I honestly believe that the lesion has very little to do with our problems, first of all it's logical...when you cut yourself..even the tiniest little cut the one you have no idea that you have, you get a cut, you feel the sting, maybe u bleed or you find out about it touching a lemon...right??? well then it starts to heal...you get that redness..then the scar/scab maybe...then new skin grows over it..sometimes leaving a scar depending on how deep the initial boo boo (for lack of better words) is.

Well, in MS don't you think that you have to have gotten the BOO BOO, long before the scab/lesion///scar.....????

Axonal damage...has to occur first...that is the unseen boo boo...pour some lemon juice on that and watch or feel it burn..walla...oh that's gonna leave a scab/scar/lesion....

Now if they focused on that, I am pretty sure that treatments would be more focused, better tolerated, less dangerous and even maybe a cure would be found.....

just some logical food for thought....

Lisa aka lbfightsms... www.myspace.com/lbfightsms until the day MS stands for Mystery Solved...

MS=mystery solved,,,,,,,,,,,,,,,I like that! I am on my 3rd drug, Campath, and am receiving it off-label in a non-drug study. You are right, no cure but I will not give up until we find one. As a nurse, I have seen so many patients fail with treatments because they do not have the "right mind set". They feel their disease has beat them and it does. Our minds have to go along with the treatments. I wish mom kissing it would make it all better, but not this time!

I was on Copaxone for 6 years, following my dx in 2001... symptoms much further back. Both 01 & 02 were major relapses with slow partial recovery. I am now considered SP w/ Relapses. I have been on Tysabri for 16 months with no problems what so ever. My 12 month MRI was 100% unchanged. T gives me hope.

I am, of course, concerned about PML but understand and accept a certain level of risk when the alturnative is the absolute certainty of MS progression. I am disappointed that the outstanding record of Tyabri currently 31,800 patients on Tysabri worldwide has been marred now 2 new PML cases. Still the ratio is much less than the study group.

My heart truely goes out to these patients & the people who love them.

In every treatment there lies a risk..heck our disease has risk..lol sadly as my very experienced well known neuro already told me, there will be a lot more PML to come, but we will fight till the day there is a cure and YES until the day MS stands for Mystery Solved..visit my myspace page to hear what will soon be OUR MS SONG..written by Monica Stoll for me and all of us who have and live with MS..she did this for me for a fundraiser for our annual ms walk and now National wants her to sing it at their conference in November and it will be in this fall's Momentum as well as myself, and her co-singer Kathy Sue Rizzo...Lisa aka lbfightsms www.myspace.com/lbfightsms

take good care all and remember, just tell your doctor everything that you feel, this way IF you are having any side effects from whatever your treatment of choice, they can catch any problems early on and possibly prevent a fate much worse then having MS...

Lisa

It is too bad that Tysabri has cause PML, but was it not after two years that the first cases of PML were discovered and the drug was pulled from the market. It has now been aprox. two years since it was put back on the market. It seems to me that the two year is the critical point where the disease seems to take hold.
Maybe people should be off that drug after 1 1/2 yrs then maybe go back on it after a year break.
Just a thought.
Marie

I had an active leison on an MRI done in Jan 2008. I started TYSABRI in Mar or Apr 2008. MRI done in June 2008 showed that the same leison was still active and growing larger. I am scheuduled for a 3rd MRI in Sept 2008. Clinically, i have not felt better on TYSABRI but getting a little worse..perhaps a little light headed/dizzy.
I am seriously thinking about whether or not to continue with the medication.
It was my understanding that 85% of the general population carry PML. However our immune systems keep the disease in check. The problem can occur for some when they take the TYSABRI which reduces your immmune system and can allow the PML to rear it's ugly head.

I was diagnosed 12 years ago at the age of 24, and it seemed like I had a relatively mild case of MS until last year when I had about 5 major exacerbations that seemed to indicate my health was spiraling downwards fast. I had been on Avonox for the first 6 years until it (and beta-interferons in general, my doctor supposed) started having averse effects on me, and then I found out I was allergic to Copaxone. I tried IVIG for 5 months and had the most terrible new episodes including almost being unable to walk. After 2 years of having refused Tysabri, my doctor convinced me to go on it.

The result: I don't even feel like I have MS anymore. I know I am the best-case scenario, but like someone else said, it has also turned my life around completely. As the mother of a young child, I was terrified to go on it, but there is GOOD NEWS for anyone considering Tysabri and it's this: There is now a blood test
to see if you are susceptible to getting PML and if you are, they don't put you on it. This put my mind much at ease--hope it helps anyone trying to make a decision about it.

I have been on Tysabri since it was re-released. It has been fantastic for me. I was on Copaxone for about 10 years before that and it was very hard to tell if it was having any affect at all. I want to stay on Tysabri regardless of what has happened with these patients. I certainly hope they don't pull the drug again. Before Tysabri, my Neurologist put me on Novantrone which damages the heart. Fortunately, I was able to change Neurologists and was back on Copaxone for a while before I was evaluated as being eligible for Tysabri. I did receive one infusion of Novantrone a couple of years before I started Tysabri. It was determined that was not enough to do damage to my heart. Novantrone is used to treat MS when it is known to cause heart damage as one of the side effects. That is known and I was willing to accept it at that time in order to receive this treatment with its side effects that could halt the forward progression of my disease. Tysabri has done that for me in spades. It has been terrific. I went into Tysabi knowing the possible dangers and was more than happy to accept that. I went into Novantrone the same way. With all of these treatments it as they say "You pays your money and you takes your chances".

I just spoke to my neuro - one of the two patients was also on a high dose chemo. This is not allowed in the US so apparently the protocol is different in Europe.

Carol

My husband has been on Tysabri since Nov. 2006, with excellent results. (He is severely disabled, confined to a powerchair or bed, and this is the only treatment that has slowed the progression.) We saw the neuro today, and she will only allow once more infusion before he has to take a hiatus with Betaseron because of the fear of PML. We really want him to continue Tysabri. He had been on Novantrone a year prior to the Tysabri, so the concern is that the combo would be more conducive to PML. We pleaded for her to let him continue Tysabri, and she said she would consult the head neuros in the country, but wasn't optimistic. Has anyone on this site been permitted to stay on?

I was aware of the 2 new PML cases through the on line group I belong to www.msrefugees.com (totally free). I discussed with my neuro and went ahead with infusion number 18. I knew the risks before starting Tysabri... I also knew the certainty of my progression if I did not. I didn't hear anything to change my evaluation. Evaluating Risk / Benifit is highly individual. I just had #20 with no problems. My Neuro is Dr Rizvi at Rhode Island Hospital.