hannah015 12/04/15
Last reply 3 years ago
Help please – Uk Lemtrada

Hi all

Hope your all ok

I went to see my neurologist on Friday and Lemtrada is still not available. I want to be referred to a hospital that does provide, so I need help to know which hospitals people have had Lemtrada that are fairly early in there diagnosis (1-2 years) I remember someone on here posting that there husband was only just diagnosed and on it. Please can you all help

Thanks
Han xx

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stumbler
3 years ago

@hannah015 , anything in this post which might help answer your question:-

https://shift.ms/topic/lemtrada-where-in-england-can-i-get-it/ ?


tracyd
3 years ago

@hannah015

Can’t belive the QE and Hearltands are still so shockingly shit 🙁

Have you spoken to your local MP about it?


us-emma
3 years ago

Hannah,

That is @emzi. Her name is Emma. I believe her boy friend had it last week- or was supposed to.

Sorry to hear your news but glad you are taking action!

Best of it,
Emma


us-emma
3 years ago

He starts on the 13th actually so she may not be online too much this week. She is very active in his care. We all deserve such champion caregivers!


hannah015
3 years ago

Thanks @stumbler brilliant as always 🙂 x


hannah015
3 years ago

@tracyd I know they are terrible, how are you? Have you found out about yours? I spoke with my mp a while ago and he made complaint to hospital but when I saw dr he said they still aren’t ready and set up despite him telling me my MRIs are bad and my last relapse being so bad he expects next one to be worse and I may not recover but then I can sue. Like I would rather have money than health. Crazy people. I said he has 2 more weeks like he asked and then I want to be referred. I wasn’t nasty but like he said I was supposed to have Lemtrada in the summer last year and he said I’m now on borrowed time of a relapse. I proved them wrong so far, they predicted another relapse in 6-12 months and I have passed both predictions which is good but they still need to sort it for everyone. Hope your ok sorry for rant 🙂 xx


hannah015
3 years ago

Thanks @us-emma hope your ok x


Anonymous
3 years ago

@hannah015, I have never heard of doctors so cold that they guess how long you have before suffering permanent brain damage due to their own incompetence! For God’s sake,I am going to write a book about this to warn Americans from adopting a similar HC system. What treatment are you currently on that instills so much confidence in your doctor? Since the availability of Lemtrada is still uncertain, doesn’t it seem prudent to be on a better DMD if possible? Best to you! 🙂


tracyd
3 years ago

@hannah015

A daft question but why not try the local radio stations ask them if the have someone who’s willing to add it into a show? We have a rather militant breakfast show presenter here on Radio Berkshire who just loves stirring up things like this. He gets people on from the area who are having trouble, invites the hospital / local government officials / department of health etc and asks them to explain what the problem is and how and when they intend to resolve it.

At the end of the day Campath isn’t an unknown treatment oncology units have been providing it for years they have no excuse for being slow.


Anonymous
3 years ago

They have $158,000 worth of reasons. That’s what Genzyme is charging for the 8 treatments. I would assume that the price would be somewhat negotiable when bargaining for a whole country’s healthcare program.


tracyd
3 years ago

@mbrsinc

In this country Lemtrada cost is £56k for the 8 treatments. Tysibri as an alternative treatment costs £10k every month … so over the 2 year period that’s £56k verses £240k …. they have no excuse at all for this from a financial perspective when it’s less than 1/4 of the cost 🙁


Anonymous
3 years ago

@tracyd, $94,500 is a great bargain, but still a hefty sum for many! I knew a whole country would negotiate a fair price for a Cambridge invented highly effective DMD. I agree it makes total financial sense because of its unique dosing. No need for further dosing reported by 80% of clinical trial participants beyond 12 months. Not to mention you don’t have to keep taking those Tysabri drips or any other DMD for potentially the rest of your life. 🙂


tracyd
3 years ago

@mbrsinc
The cost is to our National Health Service rather than to us as individuals, in that way it makes even less sense that they are not using the more cost effective treatment readily. In the UK no private healthcare provider will pay for Lemtrada to be administered (unlike the US)


Anonymous
3 years ago

@tracyd, You are absolutely right about everything except expecting government run institutions to make financial or any other kind of sense, also the perception that almost $100K means nothing. The US is almost $3 trillion in debt. My children and my children’s children will be paying that back or we turn into Greece. Your math is correct and I bet 90% of the carping here has roots in the ineffectual government run healthcare program. I am seeing many similarities here to combat the sky rocketing cost of our HC. Our direction is clearly drifting away from a private system unless we have another revolution! I have been amazed at what young people on this blog are dealing with! I wish it was better.:-)


Anonymous
3 years ago

Hannah
I replied to your other thread some time ago with some suggestions. If you’ve not done so already you could give the MS Society a call and/or contact the commissioning pharmacy at your hospital. Your local health watch may also help.

Alternatively within the west midlands region you could approach Coventry and North Staffs as these are both MS specialist hospitals.
Your could ask your nurse or GP to refer you to another hospital for a second opinion concurrently while you are waiting for any news where you are.

Good luck with it whatever you decide.


emzi
3 years ago

Hiya! I’m here! Just on the way to hospital with my partner as we speak. He’s just about to start day 3. He’s feeling absoloutely fine!! At the moment anyway. He’s having it done at Addenbrookes Hospital in Cambridge .. Hope this helps @hannah015 x


jamie1989
3 years ago

Hi @hannah015, my name is Jamie and I am currently on my 3rd day of campath at Addenbrooke’s hospital, Cambridge. The care here has been fantastic and I have not had to fight at all to be offered the treatment. Please let me know if you have any questions and either my partner @emzi or myself will reply 🙂 x


hannah015
3 years ago

Hey @sandwich thanks I have done all that, even got my local mp involved and NICE. Yet still my hospital isn’t ready. Told my dr he has till a week on Friday and if nothing can be sorted soon then I want to be referred to one of the hospitals that do offer it. Was told I was going on it last year, I’m not impatient as such but when my dr goes on about my MRI being so bad I feel it may need doing soon. Even he is annoyed with the hospital but in that case he should be referring me
Thank you for your advice x


hannah015
3 years ago

Hey @emzi and @jamie1989

Thank you both for commenting I’m so glad your doing well that’s brill, I’m going to let my neurologist know about the hospital. Sorry to be a pain but you don’t have your neurologists name do you? Just so I can get referred. Thanks again and really hope it goes well. Xx


jamie1989
3 years ago

Hi Hannah,

I am under R3, Dr Molyneux but I know there is a Dr Thorpe here too. I hope the above link proves useful as it also has a contact number that might help. Please let me know if you have any more questions as I would love to help if I can 🙂 x

http:/help.uh.org.uk/neurosciences/what-we-do/neurology/multiple-sclerosis-ms


stumbler
3 years ago

That was a challenge, but I think this is the correct link for the post above :- http://www.cuh.org.uk/neurosciences/what-we-do/neurology/multiple-sclerosis-ms


hannah015
3 years ago

Thanks @stumbler that’s brill 🙂 x


hannah015
3 years ago

Hi @jamie1989 that’s brill 🙂 I am giving my dr one more week to sort then I will ask to be referred to your dr. How’s the treatment going? You feel ok? Do you mind me asking about your ms before you were offered Lemtrada? How long you suffered? What relapses and symptoms you had? Sorry to ask so much x


emzi
3 years ago

@hannah015
Hiya! Jamie’s in bed so will reply for the time being and I’m sure he will reply when he’s feeling up to it.
He had numbness in his face September last year lasted about 10 days. Was told could be possible MS. He then had weak legs and was completely exhausted about jan\feb of this year. GP dismissed it as the flu. Later found out it was another attack. Diagnosed in March and was offered lemtrada there and then. He doesn’t really have any symptoms other than his leg occasionally “goes” when he walks.

Treatment went really well. I know he felt really safe at addenbrookes. He mainly suffered from tiredness every night and hiccups and indigestion from the steroids. I know by Thursday morning he was suffering from really heavy legs when he walked in in the mornings. But Friday came it had really hit him and he just came home and slept and slept. He’s still in bed now. Still looks shattered.

Hope that helps for the time being and I’m sure Jamie will add stuff when he’s up to it. Hope your ok 🙂 xx


us-emma
3 years ago

@emzi,

Thank you for the update. I am glad to hear Jamie is doing well & that he didn’t have any of the Lemtrada side effects- just steroid ones. I hate those steroids!

I am glad he is sleeping well. For me big fatigue did not set in for 2weeks but for most it seems to come straight away & last 10-12 weeks. He will need you a lot- practice for babies, without the nappies!

Good luck and my wishes for smooth sailing for Jamie, the worst is over and his life without MS has begun!

Take care,
One Em to another


emzi
3 years ago

@us-emma Emma, I am glad you saw this. I had written you a long inbox message updating you how Jamie had got on, but I somehow managed to delete the whole thing 🙁 x


hannah015
3 years ago

@emzi thank you for your reply that really helps, glad it went well for him and hope he is feeling loads better soon

Thank you xx

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