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Sister just diagnosed with PML
Posted: Thu Jun 20, 2013 7:28 pm
by lovemysis
Hi!
My sister was just diagnosed with PML on Monday and I am just looking for another individuals who have gone through this! If anyone can point me in the right direction or has had PML and wouldn't mind sharing their experience it would be MUCH appreciated! Thank you!
Re: Sister just diagnosed with PML
Posted: Thu Jun 20, 2013 11:06 pm
by NHE
Welcome to ThisIsMS. I'm sorry to read about your sister's PML diagnosis. What are the specifics regarding her case, e.g., how long was she on Tysabri and was she JCV positive? What other medications was she on or had been on? In the early days of understanding PML, it was believed that prior immunosuppressive drug use increased the risk of PML. However, now we see that the risk increases simply with the duration of Tysabri treatment. By the way, here's a similar thread to yours that you might find helpful.
http://www.thisisms.com/forum/tysabri-a ... 22222.html
NHE
Re: Sister just diagnosed with PML
Posted: Wed Oct 30, 2013 10:15 am
by centenarian100
I'm very sorry to hear about your sister. Hopefully she is being diagnosed early and will make a good recovery.
There was some information posted in a similar thread which may be useful to you:
http://www.thisisms.com/forum/tysabri-a ... 22222.html
Assuming that your daughter has natalizumab associated PML, she will likely need immediate inpatient plasmapheresis and a consult with an infectious disease expert.
Re: Sister just diagnosed with PML
Posted: Sat Nov 16, 2013 5:05 pm
by chowder1
So sorry.
I hope she is doing ok. I don't know much about living with PML, but a woman that is on utube contracted PML. She used to make lots of videos about MS, but not so much after PML. I think her name is Angela. Just search PML on utube and you will find her. She's the reason I stopped Tysabri.
God luck to your sister!
Re: Sister just diagnosed with PML
Posted: Sun Nov 17, 2013 12:10 pm
by FriscoTxMS
Would you be willing to share an update concerning your sister?
Re: Sister just diagnosed with PML
Posted: Mon Dec 23, 2013 10:07 pm
by centenarian100
chowder1 wrote:So sorry.
I hope she is doing ok. I don't know much about living with PML, but a woman that is on utube contracted PML. She used to make lots of videos about MS, but not so much after PML. I think her name is Angela. Just search PML on utube and you will find her. She's the reason I stopped Tysabri.
God luck to your sister!
Here is the link to Angela's channel:
http://www.youtube.com/user/angelusa73?feature=watch