Hello
I hope everyone are as good as can be x
I am still suffering from numbness which is speading more and more everyday since Oct 15th
My neuro is gonna send me for an MRI scan and put me on Tysabri.
I am worried about PML so if there is anyone else on it, could you explain it for me as I sometimes can;t take in what the neuro says.
Hi
If it’s what happens with Tysabri that you want explaining, what happens at my hospital is you give them a urine sample, which gets quickly tested to make sure there’s no sign of infection (if you have got one, you’ll not be able to have your infusion). Assuming everything’s good to go, a canula gets put in. The Tysabri is attached ona drip, and it takes an hour to go through, during which time they take your observations a few times (blood pressure, pulse, & temperature). When the Tysabri’s finished, a saline flush is then attached to the canula, to help flush the Tysabri through your system. You have to stay for another hour after finishing the Tysabri, and they’ll take your observations a few times, and then you’re free to go.
As for the PML, it’s a disease that causes swelling on the brain. The risks of it are greater when you’re on other immunosuppressant drugs, which you won’t be. The risk of it also increases if you’ve been on Tysabri for over 2 years, though I’m not sure what the currents are (though they are very small). You’ll can only get it if you’re positive for something called the JC virus, but most people are (I think something like over 70% of the general population have it), but you’ll probably be given a blood test to see whether or not you have it.
I think they can be pretty good at monitoring for the PML though. When I go for my transfusion, I’ll be asked if there’s any change in symptoms. If anything’s got worse then they might arrange for you to have an MRI scan to see if anything shows up.
Whether you’re happy with the risks is down to you. I’ve been on it for nearly 3 years, and I think the benefits outweigh the risks. I’ve only had one very mild relapse in that time, so I think it’s helped me & I’m fairly happy staying on it for now. There may come a time whenI’ll want to stop, for for now I’m going to keep on with it.
If you have any questions, feel free to ask.
Dan
Hey Moogle…
If you go to tysabri they will probably test you for JC Virus… its a virus that to be fair more people have than dont! But, if you have it, it increases your risk of getting PML.
The risks of PML are:
JC Negative - 1 in 5000
JC Positive (First 2 years) - 1 in 2500
JC Positive (2 years +) - 1 in 833
Those figures are assuming you have had nothing like chemo or immunosuppresants in the past.
They will explain it all, and give you an information pack. You will see a Dr before every infusion who will ask you questions about how youve been, and will be kept a good eye on for any potential signs of PML.
It IS scary… the thought of it… but, the risk is very small when you look at it in perspective to the chance of a lot of other things happening… even if you star tysabri OK with the risk, and freak out later, you can stop any time. The main thing is weighing up the risks against the benefit of stopping disruptive and debilitating relapses.
I am 29, Im on Tysabri and Im going for my 5th infusion on Monday. I was always ok with the PML risk, but i do admit sometimes now i do think about it and get a little scared… BUT… I also havent had a relapse for 3 months, which is a record for me as ive been relapsing every month or 2 for the last year! So I’m putting my worries aside, and carrying on for a bit.
So far there are only 3 cases of PML in the UK, the rest are all other countries… which in the number of years its been around is not so bad! So for now, I’ll continue my Tysabri and hope and pray I never become part of that figure as it eventually rises… and maybe one day I’ll feel my feet again!
I hope this info has been of use… and ive not bored you too much lol
x