Hi All,
New to this site and new (annoyingly) to MS!
Rec my diagnosis a month ago but had had about 3 months prior knowing that it was MS and my neuro also agreeing. in that time the head of neuro (hull) and another neuro had given me lists of drugs but had mentioned Tysabri as a good choice. I assume this is because my MS is fairly active (2 episodes between December and March) I received my diagnosis and again was given the list of drugs, i advised my neuro i wanted to opt for Tysabri and off i went for my blood test for JC.
I was then telephoned by the MS Specialist at my hosp (never met him before) and he asked for a breif rundown of what had been happening. I happily gave this info, why wouldn't i. He then told me that i cant have it because during one of my relapses, i still came into work so it doesnt class as disabling and he said the critera says i need to have two of them. I argued that i didnt know these were relapses as i didnt know i had MS then. I also had visited A&E when i couldnt see and was told by A&E and a neurolgist that i had a virus and nothing else was wrong with me. So i ask, HOW was i meant to be off work? i work in an office, sat at a desk. I couldnt drive and my bosses would drive me to and from work. So after he told me this info, he said he would send me info on some drugs, Lemtrada being one. I told him i didnt want to take that just yet, being the biggest drug with the most side effects i told him i want Tysabri, it suits my lifestyle, i have seen people with good results and this is my choice but i am told no, i dont meet the critera.
Has anyone on here had to fight to get their treatment choice? i am fully aware that its a money thing, Tysabri costs more in the long run and im sure with Lemtrada being new, there is a hefty bonus for neuros putting people on it? There is 1 other person in Hull on Lemtrada, my ms nurse intitally was fully supportive of my wishes but once she had tried to sound the ms guy in my way out, she soon started backtracking.
I am seeing him on Tuesday of next week and i dont know how to play it. I know he is going to push Lemtrada on me, but i am 6 months into my MS journey, i dont feel like it has been bad enough to put myself through that. I am at a crucial point in my working life and i cannot take time out at the moment but i obviously need some treatment. my initital mri showed 8 leisons and the second one showed some of those healing, new ones on my brain and new ones on my spine and neck. I like the idea of going once a month and seeing someone, i dont want to have 5 days in hospital and not be seen for a year, i dont want a drug in my system that may not agree with me. With the infusuions you can stop if its not working. Its just too much of commitment i feel and a new drug, im not a ginea pig!
Can anyone really give me info on why Tysabri is a better choice than Lemtrada?
I really dont want to start this lifelong journey with a battle to get the treatment i want, but its looking that way already.
Thanks for reading.
if it is important....im a 31 year old female, married with a 7 year old son.
New to this site and new (annoyingly) to MS!
Rec my diagnosis a month ago but had had about 3 months prior knowing that it was MS and my neuro also agreeing. in that time the head of neuro (hull) and another neuro had given me lists of drugs but had mentioned Tysabri as a good choice. I assume this is because my MS is fairly active (2 episodes between December and March) I received my diagnosis and again was given the list of drugs, i advised my neuro i wanted to opt for Tysabri and off i went for my blood test for JC.
I was then telephoned by the MS Specialist at my hosp (never met him before) and he asked for a breif rundown of what had been happening. I happily gave this info, why wouldn't i. He then told me that i cant have it because during one of my relapses, i still came into work so it doesnt class as disabling and he said the critera says i need to have two of them. I argued that i didnt know these were relapses as i didnt know i had MS then. I also had visited A&E when i couldnt see and was told by A&E and a neurolgist that i had a virus and nothing else was wrong with me. So i ask, HOW was i meant to be off work? i work in an office, sat at a desk. I couldnt drive and my bosses would drive me to and from work. So after he told me this info, he said he would send me info on some drugs, Lemtrada being one. I told him i didnt want to take that just yet, being the biggest drug with the most side effects i told him i want Tysabri, it suits my lifestyle, i have seen people with good results and this is my choice but i am told no, i dont meet the critera.
Has anyone on here had to fight to get their treatment choice? i am fully aware that its a money thing, Tysabri costs more in the long run and im sure with Lemtrada being new, there is a hefty bonus for neuros putting people on it? There is 1 other person in Hull on Lemtrada, my ms nurse intitally was fully supportive of my wishes but once she had tried to sound the ms guy in my way out, she soon started backtracking.
I am seeing him on Tuesday of next week and i dont know how to play it. I know he is going to push Lemtrada on me, but i am 6 months into my MS journey, i dont feel like it has been bad enough to put myself through that. I am at a crucial point in my working life and i cannot take time out at the moment but i obviously need some treatment. my initital mri showed 8 leisons and the second one showed some of those healing, new ones on my brain and new ones on my spine and neck. I like the idea of going once a month and seeing someone, i dont want to have 5 days in hospital and not be seen for a year, i dont want a drug in my system that may not agree with me. With the infusuions you can stop if its not working. Its just too much of commitment i feel and a new drug, im not a ginea pig!
Can anyone really give me info on why Tysabri is a better choice than Lemtrada?
I really dont want to start this lifelong journey with a battle to get the treatment i want, but its looking that way already.
Thanks for reading.
if it is important....im a 31 year old female, married with a 7 year old son.
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