tysabri in europe

At the end of July 2008, it was revealed that there were 2 new cases of PML in Europe - in people who were on Tysabri as their only treatment. In Europe, the program to oversee Tysabri is not as stringent as the TOUCH program is here in the US, and that may play into the scenario. There are a number of details that have yet to come out. One of the patients in Europe is recovering pretty well at this point, and one of them is doing very poorly.

Sounds like Gilenya? I'd check into it first before deciding to start this one. I'm over in europe and I think it's been pulled for review over here after some serious side effects. Hope things go well for you.

Studies have just been released noting that psoriasis patients in Europe have come down with PML after using the drug Fumaderm. A key ingredient is the dimethyl fumarate also used in Tecifidera. The media are jumping all over this, and Biogen stock was affected adversely. However, other ingredients are not the same. The FDA was aware of the Fumaderm issues when it approved Tecfidera.

Plasmorephis, blood filtering is already standard treatment to get Tysabri out of the body quickly if PML happens. I saw that a trial had been registered with the US FDA in clinicaltrials.gov when Tysabri was returned to market a trial was registered for Plasmorephis blood filtering to remove Trysabri from the body quickly whren it needed to be removed quickly. I was proud of myself for noticing when that trial was registed with the gov & watched it's successful completion.

As of now there have been two additional cases of PML an often fatal viral brain infection in Europe in two people who had been taking Tysabri for 14 months and for 17 months. So, currently the infection rate is 2 people per 6000 taking it. This is less than the "label warning" of 1 per 1000, but it really does dash the hope that the prior cases occurred because of the simultaneous use of other immune-modulating drugs. Phooey.

He decided it was time to try Tysabri. So last June he sent me to UCSF to check if I could go in the program and I got in right away. I saw my regular neuro again in July and his attitude was like...well they have control of your meds now so what do you want me to do for you?? HHHMMMM you scheduled a follow up appt, so I came. So he did reschedule me for 6 months out anyway. I went to UCSF to get a brain MRI and check up on Jan 5th. Brain MRI looks like no changes...

3 fever and someone I only know briefly in passing, has liver disease stemming from the Tysabri, so yeah, I want off of it. It doesn't appear to be working as well this year. You are going to love your trip, Alex, I wish you the best on it.

Hi Ellador, Welcome! I'm not a Dr. but progressing rapidly and a-typical MS is a situation where Drs will explore other possible causes. So, I'm not surprised to read the 2nd opinion Dr. said atypical but what else could it be... That's a good thing, and I wanted to reiterate it here because I'm guessing you should have hundreds of mimics ruled out by now. That said, I'd like to steer you to our "search this community feature.

Some people with MS have a dormant Virus in them called JC Virus. Tysabri will trigger that Virus, the Virus lays dormant in the Brain. Until they approve the PRC Blood test for that Virus, there is only a slight way to detect it, and that is with a Brain and CSpine MRI. Therefore, Tysabri is quite risky. Copaxone, on the other hand is a much "cleaner" treatment, less risky and easier on your system, with about the same amount of side effects as MS itself. Copaxone is safer.

Yay! I for one AM switching treatments. Good-bye needles. Ordinarily I'd be in the 'stand back and see how it goes for others' group. This is different, for me, because the same drug has been used for years now in Europe to treat psoriasis. so there's a lot of track record out there. I know there can be side effects, not serious ones, and probably fleeting if they happen at all, and I'll have to deal with that if and when. For now, I'm just glad.

Know others have worse problems, but I'd just love a vacation without Tysabri side effects. I diligently took my Prilosec for the 5 days, and wouldn't you know, on the 6th day, I was back in ER that night, hooked up to IV and fluids. They had to give me a bolus bag before they could draw blood for the labs, guess I was dehydrated. I love it when they make regular rounds with WARMED blankets!

I was one of the MS patients that spoke before the FDA AC (via videotape) in March 2006 in an effort to bring Tysabri back to the market. I'm so very grateful that we all succeeded! During those 18 months that Tysabri was off the market, I was hit by a severe relapse which ultimately put me in a wheelchair. And even though I am still wheelchair bound (that damage is probably permanent now), my Quality of Life has greatly improved and my MS is now stable, thank goodness.

Hi, i have had MS for 12 years, am on Tysabri for 3. I have a new symptom where my feet and sometimes my hands have a shooting or pulsing pain where it feels like the pain you have if they have gotten very cold and are warming up. Any ideas?

Hi, Cammie, I failed Rebif after 2 back-to-back flairs. It also gave me hives. I started Tysabri in February, and had my 2nd infusion 2 weeks ago. I haven't noticed a big difference, yet. I have quite a bit of fallout from my last flair, namely, my inability to play my guitar for more than about 20 minutes. I've had to quit performing for the time being. I have a crazy strong immune system, and therefore not at huge risk for PML.

The test tells if the person has been exposed to the JC Virus or not. PML on tysabri has only occured in people who are JC positive. There has not been a single case of PML in JC negative people. You can read the release here- http://www.medpagetoday.

HOWEVER if you continue to test negative for the JC Virus there is no reason you should have to stop tysabri if it is working for you. In fact, stopping Tysabri is shown to cause serious relapses and is not something fun to go through. I would talke to a different doctor about tysabri and get off the holiday idea. Of course if you test positive for the JC virus, that is a different story entirely. good luck in working this through with your medical provider.

Guess what chemo worked in my case. He is thinking Tysabri to be more aggressive. I have PPMS and I would do Tysabri if I did not have Cancer.

I have not had any breaks in my treatment with Tysabri. Some neuros will only let their patients stay on it for 12 or 24 months .... some have their patients take "vacations" from Tysabri for several months, and then begin it again.

Tysabri in europe

Common Questions and Answers about Tysabri in europe

tysabri