As of 4th February 2014 there have been 439 cases of natalizumab-associated PML; an increase of 9 cases from last month. The mortality associated with PML in this setting is currently 23%, i.e. 101 MSers have died as result of PML, The majority of the PML survivors have a poor functional outcome. You need to keep these figures in context of over 123,000 MSers have been treated with natalizumab.
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Marco, Thanks for the info. I am JC+ and have had 80 infusions. I would love information about the individual cases.
I have been on an every 6 week infusion schedule. These statistics are interesting. -
I'd be interested in seeing the whole number of those taking Tysabri so we could know the percentage of infusion patient who contract PML.
But I must say, nearly a quarter of all who get PML dying seems very risky to me.Comment
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Marco, thanks for keeping us posted....interesting.Comment
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Jen,
The statistics aren't great, but there are other statistics about Tysabri that are great. One-in-three Tysabri patients are no longer have new lesion or relapse activity because Tysabri has stopped MS so thoroughly. The average EDSS score for patients on Tysabri improves a bit. There are more too, but my brain is tired.
I just hope all of our Tysabri friends are mindful of the PML warning signs and get their rumps to the doctor ASAP if anything appears.Comment
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Just to update things a little.
As of March 6, there have been 448 verified cases of PML related to Tysabri with 24% of the patients having died. This is creeping up, and I would love to know why it is.
In 2011, 20% of patients died after contacting PML. In 2013 it stayed at about 22% and then 23%. Now it is at 24%.
When numbers were first posted on this web site, he did try and find as much information as possible and posted this. You knew the age, gender, length of time on Tysabri, county and how they were recovering. Now you barely get the number of cases.
Once you have contacted PML, it is a life long fight to get though it the best you can. From mild disability to being bedridden for the rest of your life.
I feel this medication is the best out there. For me, it has been like a cure. But having said this, I hope that everyone on it knows everything they can about it. Not just relaying on your physician. You have to be the one in charge and know everything about this medication and how it affects you. Your doctor doesn't live with your ms. He should only be a part of the decision process.
Do not go on this drug without knowing all you can. As with any drug. The days of completely putting your health care in the hands of your doctor are over. They just do not have the time, and it will only get worse. You have to step up and take charge of your health care. It's a lot of work and it is very discouraging at times when it is so hard to get the information you need. But it is very much worth it.Comment
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Does anyone know why ehealthme is saying almost 3,000 people have PML from Tysabri? Im just curious why there is a difference. Im taking Tysabri right now and the whole PML thing makes me nervous.
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Jola,
ehealthme uses self-reporting and information sources that are EXTREMELY inaccurate. According to ehealthme, it said, 270 conditions and 715 drugs that could cause PML. I see what you are looking at:
- We study 97,502 people who have side effects while taking Tysabri. Among them, 2,943 have Pml. In another place is says 2,186 people with MS have PML.
- We study 203,271 people who have Multiple sclerosis. Among them, 2,199 have Pml
According to ehealthme...
These are the post-marketing studies of drugs that are associated with Pml. The number of cases are in ().
Advil (44)
Aleve (12)
Aspirin (132)
Fish Oil (29)
Mucinex (3)
St. John's Wart (4)
Viagra (19)
Vitamins (26)
Conditions associated with Pml. The number of cases are in ()
Asthma (7)
Bedwetting (26)
Diarrhea (2)
Diarrhoea (2)
Dizziness (16)
Drowsiness (4)
Dry Eye (8)
Dry Eyes (8)
Hiccups (9)
Pregnancy (40)
It gets even better --
Common Multiple sclerosis symptoms in men. This is a real world study of common symptoms of Multiple sclerosis among men.
Common symptoms and complications in men:
Drug exposure during pregnancy (22 reports)
Premature baby (12 reports)
Exactly how many men with MS are having babies???Comment
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Thanks for explaining that Marco.
And the answer is no men can give birth to babies.
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