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Question about Tysabri and PML
Sorry, I saw it in another post but didn't want to hyjack the thread. Someone said that Jose who died from PML were taking more than one MS medication. Is that more than one DMD or treatment for symptoms?
True we all have to make the decision about what each DMD drug can do to us, it is a hard and individual decision any way you look at it.
My take is that life itself has no guarantees as do the DMD drugs. My goal is to slow down my MS progression as much as medically possible and I am one, I admit, who does not like taking medicines of any kind.
I've had trouble adapting to my DMD, for sure, but after much conversation with my neuro and my support team, I'm staying with Tysabri for the long run
I'm going to die from something in the next 30 years, that's a given, and guess there are worse things than PML.
I know that isn't much uplifting for those of a younger age. However, my MS is as real to me as it probably is for each of you. Again, its an individual thing and hopefully we don't let public outcry dictate our decisions but careful research and conversations with our medical support team.
I digres so I will rest!
My take is that life itself has no guarantees as do the DMD drugs. My goal is to slow down my MS progression as much as medically possible and I am one, I admit, who does not like taking medicines of any kind.
I've had trouble adapting to my DMD, for sure, but after much conversation with my neuro and my support team, I'm staying with Tysabri for the long run
I'm going to die from something in the next 30 years, that's a given, and guess there are worse things than PML.
I know that isn't much uplifting for those of a younger age. However, my MS is as real to me as it probably is for each of you. Again, its an individual thing and hopefully we don't let public outcry dictate our decisions but careful research and conversations with our medical support team.
I digres so I will rest!
http://www.fda.gov/Drugs/DrugSafety/ucm288186.htm
I hope I made that link correect.
I t is from the FDA in january 2012 update.
Patients taking tysabri rissk of PML with all three factors is 1/90.9 (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.
*** a person wiith positive antibody and beinnng on tysabri alone CAN develope PML
But with better wareness and timely dx's of PML , the outcome may be better, but I questions where is the information we needdd about the people's level of recovery and what degree of increased disability.
How are the suvivors at 6 mos..one year.. two year?
I do not know if they have compilied data about that.
It could help withh these tough decissions having morre information available.
When I started treatment I knew the risks and took theem on.
It has been 24 and I am making the decission to come off.
This suurely can be a tough disession and what ever you do decide.
Take care, amo
I hope I made that link correect.
I t is from the FDA in january 2012 update.
Patients taking tysabri rissk of PML with all three factors is 1/90.9 (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.
*** a person wiith positive antibody and beinnng on tysabri alone CAN develope PML
But with better wareness and timely dx's of PML , the outcome may be better, but I questions where is the information we needdd about the people's level of recovery and what degree of increased disability.
How are the suvivors at 6 mos..one year.. two year?
I do not know if they have compilied data about that.
It could help withh these tough decissions having morre information available.
When I started treatment I knew the risks and took theem on.
It has been 24 and I am making the decission to come off.
This suurely can be a tough disession and what ever you do decide.
Take care, amo
You say Jose is just fine, despite rumors to the contrary?
As for the combination of drugs, I don't believe that is quite accurate. You would not be on two DMDs at the same time, especially not with Tysabri. Previous DMD use has to be stopped and there is a washout period of at least 30 days before you can begin Tysabri. If the neurologist doesn't require a washout period, get out of there and go to someone who knows what they are doing.
If you choose to go off of Tysabri, there is going to be another washout period. The recommended length for Tysabri to gilenya, is about 4 months. During that time, the recommended protocol is to trreat the patient with routine rounds of steroids until the gilenya can be started. I asked this question recently and the washout to go to the other DMDs can be about 30 days, just not the jump to Gilenya.
The Incidence of PML is small, but that is no comfort to those people who contraact it. At this point, with the monitoring in place they are having great success at catching it early and treating it. My neuro has a whole plan laid out in writing for me if I were to develop PML.
To date, there have been NO cases of PML in the tysabri patients who test negative for the JC Virus. We know in science nothing is ever 100% and someday i think there will be that JC negative case of PML.... just my thinking. I am JC negative and I am retested every six months to make sure I haven't picked it up somewhere. That made my decision to go on Tysabri a bit easier.
People who test JC positive, appear to have little to no risk of developing PML in the first year of treatment, but again that is little comfort to the exceptions. It is suggested that JC positive patients be on tysabri no longer than 24 months at a stretch.
Tysabri is definitely one of those Risks VS Benefits drugs that needs to be discussed thoroughly with your doctor, your family and then research by the patient.
I hope this helps some - it is a tough decision to make.
hugs, L
As for the combination of drugs, I don't believe that is quite accurate. You would not be on two DMDs at the same time, especially not with Tysabri. Previous DMD use has to be stopped and there is a washout period of at least 30 days before you can begin Tysabri. If the neurologist doesn't require a washout period, get out of there and go to someone who knows what they are doing.
If you choose to go off of Tysabri, there is going to be another washout period. The recommended length for Tysabri to gilenya, is about 4 months. During that time, the recommended protocol is to trreat the patient with routine rounds of steroids until the gilenya can be started. I asked this question recently and the washout to go to the other DMDs can be about 30 days, just not the jump to Gilenya.
The Incidence of PML is small, but that is no comfort to those people who contraact it. At this point, with the monitoring in place they are having great success at catching it early and treating it. My neuro has a whole plan laid out in writing for me if I were to develop PML.
To date, there have been NO cases of PML in the tysabri patients who test negative for the JC Virus. We know in science nothing is ever 100% and someday i think there will be that JC negative case of PML.... just my thinking. I am JC negative and I am retested every six months to make sure I haven't picked it up somewhere. That made my decision to go on Tysabri a bit easier.
People who test JC positive, appear to have little to no risk of developing PML in the first year of treatment, but again that is little comfort to the exceptions. It is suggested that JC positive patients be on tysabri no longer than 24 months at a stretch.
Tysabri is definitely one of those Risks VS Benefits drugs that needs to be discussed thoroughly with your doctor, your family and then research by the patient.
I hope this helps some - it is a tough decision to make.
hugs, L
yes, that's what i means......
I keep telling everyone as long as you only take ONE, you are ok, this is what Tysabri/Biogen is telling me............
All of the people who died were taking multiple DMD's or MS drugs (not to be confused with baclofen or things like that, but drugs that hold back progression of MS)
Am sorry to hear about Jose, was it recent?
I keep telling everyone as long as you only take ONE, you are ok, this is what Tysabri/Biogen is telling me............
All of the people who died were taking multiple DMD's or MS drugs (not to be confused with baclofen or things like that, but drugs that hold back progression of MS)
Am sorry to hear about Jose, was it recent?
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