irishsue
03-04-2008, 11:19 AM
Hi everyone,
I just happen to be browsing the MS Society's website yesterday. I have been on Tysabri since it first came on the market as well as being in the clinical trial. I keep getting these skin infections on my chest and inside the roof of my mouth. When I brought it up to my neuro he just gave me some cream and it seemed to get better.
Well to make a long story short I reed on the website yesterday that 2 people have been dx'd with skin cancer(melanoma) and one has died. I am scared to death.
First thing is I am going off of Tysabri. Between this and the PML scare I just dont think they have studied it long term.
I have made an appt with a dermatologist and my neuro. I just wish I had other options
Just wanted to vent
Take care
Sue
I just happen to be browsing the MS Society's website yesterday. I have been on Tysabri since it first came on the market as well as being in the clinical trial. I keep getting these skin infections on my chest and inside the roof of my mouth. When I brought it up to my neuro he just gave me some cream and it seemed to get better.
Well to make a long story short I reed on the website yesterday that 2 people have been dx'd with skin cancer(melanoma) and one has died. I am scared to death.
First thing is I am going off of Tysabri. Between this and the PML scare I just dont think they have studied it long term.
I have made an appt with a dermatologist and my neuro. I just wish I had other options
Just wanted to vent
Take care
Sue
Sponsor
MSNik
03-04-2008, 01:16 PM
Sue, how terrifying. Im sorry for you. Please do go see the Derm and let us know what he says.
I have a friend on Tysabri who is complaining about brown spots on her chest...Ive told her over and over to go see a derm, too. Its really scary. Last week, my Neuro mentioned to me that (hopefully) the interferons will be out in pill form by mid 2009....truthfully, I dont want to be a guinea pig and be one of the first on it! Id rather wait and see what stats come out of it...youre so right, between this and the PML scare...whats the point? Please take care of yourself..and keep us updated.
Hugs
Nikki
I have a friend on Tysabri who is complaining about brown spots on her chest...Ive told her over and over to go see a derm, too. Its really scary. Last week, my Neuro mentioned to me that (hopefully) the interferons will be out in pill form by mid 2009....truthfully, I dont want to be a guinea pig and be one of the first on it! Id rather wait and see what stats come out of it...youre so right, between this and the PML scare...whats the point? Please take care of yourself..and keep us updated.
Hugs
Nikki
MSJayhawk
03-04-2008, 02:59 PM
I just read that in an email health newsletter that arrived yesterday. Apparently there is a link between Tysabri and Melanoma. Get yourself to a good dermatologist and work with your neuro to make any changes needed.
irishsue
03-04-2008, 03:37 PM
Thanks for listening I am really scared but I got on the phone to the derm and got the next available appt Thursday
I hear you about the guinea pig thing Never ever again
Take care
Sue
I hear you about the guinea pig thing Never ever again
Take care
Sue
tuckersmom
03-04-2008, 08:51 PM
Irishsue - I saw your post today and looked this medicine up on some of my medical websites. One of the people with melanoma had a mole on the back of her eye that she knew she had and her eye doctor was aware of it and keeping an eye on it every year at her exams. It turned cancerous after several treatments with Tysabri. The second lady has a mole on her shoulder that turned cancerous and spread to lymph nodes.
I am so happy your called and got your appointment so soon. It is scary but you are definately doing all the right things.
Please do let us know what the derm. says.
Lisa
I am so happy your called and got your appointment so soon. It is scary but you are definately doing all the right things.
Please do let us know what the derm. says.
Lisa
irishsue
03-05-2008, 08:12 AM
lisa,
Thank so much I also just wanted to make our readers awae of the latest problems with it. It seems like my doc wasnt going to tell me
Thanks again and have a good day
Sue;)
Thank so much I also just wanted to make our readers awae of the latest problems with it. It seems like my doc wasnt going to tell me
Thanks again and have a good day
Sue;)