tysabri and pml

9 (11/1000) Patients taking tysabri risk of PML with positive JC antibody and asecond risk factor (i.e. being on tysabri 24-48 months) 1/250 (4/1000) that does not mean you can not develope PML before the mmagic 24 mark. The risk just in creases at that point.

Hi DH - Welcome to our group. I am currently getting Rituxan (rituxmab) and before this I was on Tysabri. They are the only two DMDs I've been on. I have had good experience with both meds. Tysabri lasted about 20 infusions before it stopped working. The Rituxan seems to be doing the job now. I started Rituxan in November of last year and finished my second round yesterday. I had no adverse reaction of any kind to either med.

• Although the absolute risk for PML in patients treated with Tysabri cannot be precisely determined, the U.S. FDA and the company have released data suggesting that the risk increases with increasing time on therapy. • The company changed the label of Tysabri to indicate that the risk of PML is increased in patients who have been treated with an immunosuppressant (such as mitoxantrone, and less commonly, azathioprine and methotrexate) prior to receiving Tysabri.

t think I would trade procedures, even being JC+. Every drug has a risk and PML is the only one associated. No one on ONLY Tysabri has come down with PML, only those on TWO or more drugs. Go to Tysabri's website and download the Patient Information Sheet and read it. The nice thing is that its not considered under your regular "drug" section of insurance but under outpatient procedures........

I have a different take on the risk of Tysabri. What I see as a big risk is the near certainly that your mother will go downhill - possibly rapidly - if she stops the Tysabri. Lets call this a 1 in 2 chance or worsening severely. Then you look at the slightly increased risk of PML after more than two years on Tysabri. The initial risk was 1 in 1000 and now it has increased to about 1 in 800 according to her neurologist.

Looking into taking legal action against the manufacturer of Tysabri who have settled out ot court numerous times due to the PML and skin scarring Tysabri has caused to people. It is now 1/19/12 and the skin reaction has caused my skin to turn blue and purple...................I never had skin problems befor Tysabri.

I have been on every MS med and only the Tysabri was effective. I eventually tested positive for antibodies for PML and was taken off. I am back to deterioration. Tysabri was miraculous...use it if you can! Now I want to try stem cells.

The Risk of PML is greatest in the setting of a positive J-lymphocytesC virus, greater than 24 months of Tysabri, and concurrent use of other DMD's or steroids. Those are old recommendations, and new info will change them in the (near?) future. PML is caused by the J-C Virus. A little more than half of all people have been infected with the JC virus. It generally lives asymptomatically in the brain unless something has occurred to cause the immunity of the brain to be compromised.

What it does do is makes the doctors aware that this patient is at higher risk for PML and they should be momitored closely while on Tysabri. I;m glad to hear she is doing well - I hear great things about Tysabri. BTW I did the test and tested negative. 65-70% of people with MS test positive for the JC Virus. JC is because that is the initials of the first person this virus was see in.

I have MS and Neuropathy. I am currently on Tysabri. Previously I was on Betaseron and IVIG. When I went to Tysabri my doctor took me off IVIG and now my Neuropathy is worse, my feet and legs are on fire. Does any one know if it is safe to be on Tysabri and IVIG at the same time? My doctor said she would need to consult with other doctors before she would add IVIG to my treatment.

I was on Copaxone and rebif prior and had flares. 2 years on Tysabri And no real side effects, just the wearing out a few days before next infusion. My neuro loves the "juice" so I imagine he will keep me on. I used to be a NP now on disability and I can't totally understand my MRI results. Just frustrating. I am only getting tested once a year for JCV. I have been taking my health a lot more seriously and just lost 50 pounds.

from Tysabri could affect its sales growth, and that prospect weighed on shares of Biogen and Elan on Friday. Shares of Cambridge, Mass.-based Biogen recently fell 5.8% to $44.49, while the American depository receipts of Dublin-based Elan plunged 20% to $5.17. Biogen spokeswoman Naomi Aoki said the incidents of PML remain rare, reiterating the company's contention that the rate remains within the 1-in-1,000 patient level implied by its label. As of Sept.

But the neuro also talked about Natiluzamab (tysabri) and the PML problems associated with it. The take aways were: PML occurs with other drugs/diseases too, but doesn't occur spontaneously. People with JC Virus negatives NEVER develop PML according to the stats. Most interesting to me was the idea that that European incidence rate of PML is hypothesized to be significantly greater because of the cost constraints of health care.

The Meds that are 1st choice in Treatment, I beleive, are Copaxone, Avonex, Rebif and Betaseron. There are less risks with those than Tysabri and Gilenya. I had my 1st Tysabri infusion yesterday, and it was not an easy decision for me. I was MUCH more comfortable with Copaxone. I tested negative for the JC virus, but I am still worried. I too have young children, and I do worry about the side effects of Tysabri.

My clinical exam was good and my brain MRI was free from evidence of PML and free from any new lesion activity. I have been having some issues with my left leg lately, beyond my 45 minute exercise wall. My left leg can sometimes have a mind of its own. If I walk down a hallway and turn right it wants to keep going straight, He seems to think that there may be some activity in my c/t-spine. He also thinks I will benefit from some PT.

The risk associated with being JCV + and getting Tysabri is PML. PML is a rather nasty little brain infection. In addition to monitoring my blood for JCV, my doc also used MRI to watch for signs of PML. My MS dod not advance, nor did I have any relapses while on Tysabri. I stopped for 2 reasons. The first was that after initially being JCV -, I converted to JCV +. At the same time my doc was able to determine that Tysabri was no loger working.

so we discussed copaxone and I am not thrilled at daily injections so we then discussed tysabri and feel that may be a good fit.

According to a statement issued by Biogen Idec, the drug’s manufacturer, “clinical vigilance led to early identification of signs and symptoms of possible PML and clinical evaluation which included MRI scanning and CSF testing.” The patient, who was admitted to the hospital on October 24, underwent plasmapheresis to remove Tysabri from their system and was released from the hospital on October 28. The patient is currently under the care of the treating physician.

Rita, you are the leader here when it comes to Tysabri and the risks. Thanks for staying on top of this and sharing what you find out. I know there is a washout period for the CRABS before starting tysabri, but I'll have to look at my papers to see about the washout period afterwards. In the meantime I'll take your word for it - you are a very informed consumer.

However, we have some good evidence that the TOUCH surveillance program is learning to pick out at least some of the people who may be at higher risk for PML, stopping the Tysabri and trying preemptive measures to get the Tysabri out of the system. Okay then. What is the worst thing that could happen if you don't do anything - except steroids - and what is the risk that it would happen?

Tysabri and pml

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