16 and looking for help.
13 Oct 2013 at 3:19PM
Hi,
My name is Rachael and i am 16, i was diagnosed with RRMS in june of
this year. I have had 6 relapses in 11 months one which kept me in
hospital for 2 weeks. I am on the 3 times a week rebif injection and
have been for 2 months, but my MS nurse is hoping to take me off it
because of the side effects im expereincing and wanting to put me on
Tysabri, i am hopefull that this will not happen and the tablet will be
passed for cost effectivness in scotland and i will be put on to that
early next year.
The
internet is a very scary place for me to look for answers but i know my
chances are slim to be left 100% normal. I would like someone to help
me understand a little bit more about the drug Tysabri, if anyone is on
it or knows someone that is could you let me know how it effects you?
Thankyou.
Hi Rachael - can't be of much help myself but it might be
worthwhile reposting this on the Everyday Living forum as that seems to
get the most peopple reading and responding to posts...Carrie
Hi Racael,
I am sorry to hear your having such a hard time with your MS at the moment. I don't know enough about tysabri to offer any helpful advice, but i'm sure someone else will be along soon. You are right to stay away from google, however this site has lots of reliable information as does the MS trust website - might be a good place to start?
I do hope that whatever drug you choose will keep the ms in check, and you start to get some control back.
Take care, Laura x
I am sorry to hear your having such a hard time with your MS at the moment. I don't know enough about tysabri to offer any helpful advice, but i'm sure someone else will be along soon. You are right to stay away from google, however this site has lots of reliable information as does the MS trust website - might be a good place to start?
I do hope that whatever drug you choose will keep the ms in check, and you start to get some control back.
Take care, Laura x
Hi Rachel,
Apologies for the slow response, and that your post wasn't published sooner. Sorry to hear you've had such a rough year. No wonder you're feeling quite nervous. There's some information about Tysabri here:
http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/tysabri
For more information about local services and treatments, please call our information team on
0208 438 0799
If you feel you need to talk to someone about your current situation and how it's making you feel, please call our Helpline on
808 800 8000
Also, please follow us on Twitter too (@mssocietyuk) , there's a great community on there also, which you may find easier to chat with on your phone.
Stewart (admin)
Apologies for the slow response, and that your post wasn't published sooner. Sorry to hear you've had such a rough year. No wonder you're feeling quite nervous. There's some information about Tysabri here:
http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/tysabri
For more information about local services and treatments, please call our information team on
0208 438 0799 If you feel you need to talk to someone about your current situation and how it's making you feel, please call our Helpline on
808 800 8000 Also, please follow us on Twitter too (
Stewart (admin)
Hi Rachael
Well you have come to the right place here to talk with lovely people who know how you are feeling.
I am sorry to hear about your diagnosis in June. I was disgnosed 8 years ago. It takes a while to get your head round the d/x but with the help of family, friends and this brilliant site you will get there I am sure.
I can't help with Tysabri as I have no experience of it, just the Rebif but like Laura says I am sure someone will pop on to give you advice and help.
Like Carrie says, it might be worth reposting on everyday living cause there are a lot of experienced old timers on that part of the site.
Take care.
Shazzie xx
Well you have come to the right place here to talk with lovely people who know how you are feeling.
I am sorry to hear about your diagnosis in June. I was disgnosed 8 years ago. It takes a while to get your head round the d/x but with the help of family, friends and this brilliant site you will get there I am sure.
I can't help with Tysabri as I have no experience of it, just the Rebif but like Laura says I am sure someone will pop on to give you advice and help.
Like Carrie says, it might be worth reposting on everyday living cause there are a lot of experienced old timers on that part of the site.
Take care.
Shazzie xx
14 Oct 2013 at 11:22AM
Hi Rachel
I am so sorry you are having a tough time...your story is very similar to mine. Although I am older. Was diagnosed at 24 - I went straight onto Rebif and like you really struggled with the side effects. It wasnt until I kept on relapsing that I was put onto Tysabri.
Tysabri can be a scary drug to read up about (cant they all). Every hospital is different, but at mine they test you for the JC virus (which is a normal virus which I think about 50% of the population with and without MS test positive for) but if you are positive it can be a pointer that you may get an additional problem (PML) whilst using Tysabri. Although the chances of this are VERY slim. I (and the rest of my group that receive Tysabri when I do) are positive for this virus. But I can tell you now from my own experience the benefits of being on Tysabri have way way outweighed the risks. I have been on this for 18 months now and have been relapse free. The Drs say it doesnt help any symptons or damage from previous relapses before you start Tysabri - but my walking has improved so much since I have been on it.
Tysabri is given to you via a drip in the hospital, the Ty takes about an hour to go in and then you have a saline (water) flush afterwards. The whole thing takes 2/3 hours. Although when you start they make the drip a little slower until you are used to it. The nurses check your urine before you have treatment (to check for infections), blood pressure, pulse and temp. And then again afterwards minus the wee test!
The other benifit for me in getting Ty, is that you make new friends. You generally have your treatment with the same people every month, you see the same nurses - and it does become a bit fo a social event.
If its the pill that you want I will cross my fingers for you that you get it.
Feel free to message me at any time if you want any further info - I am no Dr and only speak of my own personal opinion on this.
lots of love xx
I am so sorry you are having a tough time...your story is very similar to mine. Although I am older. Was diagnosed at 24 - I went straight onto Rebif and like you really struggled with the side effects. It wasnt until I kept on relapsing that I was put onto Tysabri.
Tysabri can be a scary drug to read up about (cant they all). Every hospital is different, but at mine they test you for the JC virus (which is a normal virus which I think about 50% of the population with and without MS test positive for) but if you are positive it can be a pointer that you may get an additional problem (PML) whilst using Tysabri. Although the chances of this are VERY slim. I (and the rest of my group that receive Tysabri when I do) are positive for this virus. But I can tell you now from my own experience the benefits of being on Tysabri have way way outweighed the risks. I have been on this for 18 months now and have been relapse free. The Drs say it doesnt help any symptons or damage from previous relapses before you start Tysabri - but my walking has improved so much since I have been on it.
Tysabri is given to you via a drip in the hospital, the Ty takes about an hour to go in and then you have a saline (water) flush afterwards. The whole thing takes 2/3 hours. Although when you start they make the drip a little slower until you are used to it. The nurses check your urine before you have treatment (to check for infections), blood pressure, pulse and temp. And then again afterwards minus the wee test!
The other benifit for me in getting Ty, is that you make new friends. You generally have your treatment with the same people every month, you see the same nurses - and it does become a bit fo a social event.
If its the pill that you want I will cross my fingers for you that you get it.
Feel free to message me at any time if you want any further info - I am no Dr and only speak of my own personal opinion on this.
lots of love xx
Hi Rachael. good to see you here, but you can post on any of the boards if you wish to.
I see Stewart has given you a link for further help. He is a great guy and can be relied upon for help.
I have heard Tysabri can have some really good benefits, but it has to be approached with care and you need top be checked out first, due to it`s possible side-effects.
It is sad that someone as young as you, is blighted by MS, but with the right meds and good support, you can still live a great life.
Take care and pace your activities hun.
much luv Pollyxx
I see Stewart has given you a link for further help. He is a great guy and can be relied upon for help.
I have heard Tysabri can have some really good benefits, but it has to be approached with care and you need top be checked out first, due to it`s possible side-effects.
It is sad that someone as young as you, is blighted by MS, but with the right meds and good support, you can still live a great life.
Take care and pace your activities hun.
much luv Pollyxx
14 Oct 2013 at 2:04PM
Hi Rachel
Firstly, you poor little thing, so many relapses must've been hellish! :(
Well bizarrely, I don't know anyone with MS (which is one of the reasons I think I didn't twig sooner!) but in the last 2 weeks I've met 2 people with MS. One works at our local casino and I met him on Friday, he was all chatty and I was shattered so I said "yeah, I've got this MS thing and by the end of the week....." he smiled and opened his wallet and showed me his MS Society card :)
He has relapsing remitting and is on tysabri, I was curious as there's something I might be able to try for PPMS that involves an infusion, and he happily showed me pictures of when he went in for it, and pictures of his birthday cake and celebrations (we concluded that MS messes up birthdays) - so I'm not saying it's a breeze BUT he seemed ok with it :)
OK, I need to push off as my PC is going to re-start and is flashing at me! Gah!!!
Take care sweetie, you are doing amazingly well to have coped with all that
Sonia xx
Firstly, you poor little thing, so many relapses must've been hellish! :(
Well bizarrely, I don't know anyone with MS (which is one of the reasons I think I didn't twig sooner!) but in the last 2 weeks I've met 2 people with MS. One works at our local casino and I met him on Friday, he was all chatty and I was shattered so I said "yeah, I've got this MS thing and by the end of the week....." he smiled and opened his wallet and showed me his MS Society card :)
He has relapsing remitting and is on tysabri, I was curious as there's something I might be able to try for PPMS that involves an infusion, and he happily showed me pictures of when he went in for it, and pictures of his birthday cake and celebrations (we concluded that MS messes up birthdays) - so I'm not saying it's a breeze BUT he seemed ok with it :)
OK, I need to push off as my PC is going to re-start and is flashing at me! Gah!!!
Take care sweetie, you are doing amazingly well to have coped with all that
Sonia xx
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