Last reply 3 years ago
Got my Lemtrada screening on Tuesday

I’ve got my Lemtrada screening on Tuesday and all being well should be starting treatment soon after. I cant wait to get going with it and ditch the rebif injections for good!

I’m really hopeful this treatment will flat line the beast for a good few years πŸ™‚

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stumbler
3 years ago

Good luck, @sandwich .


Anonymous
3 years ago

Good for you @sandwich! I hope they get you approved and on your way to a better quality of life. I am still in a holding pattern waiting for my neurologist and his facility to receive the necessary certification. I am scheduled now for April. I hope we both will have successful stories to share!


tracyd
3 years ago

Good luck @sandwich

I’ve had my x-ray …. no TB YAY πŸ™‚ bloods are being held for a couple of weeks and the bed has been requested for 2nd week of May

In the interim practicing drinking vast quantities of water, Upped my vitamin and mineral supplements to massive quantities, eating a bit healthier, drinking a little less wine and getting out in the fresh air more for free vitamin D hello summer bye bye pesky immune system πŸ™‚


Anonymous
3 years ago

Thank you everyone. @mbrsinc @tracyd, good luck with your treatment. Hopefully we will be in a position to compare experiences in the next couple of months.


tracyd
3 years ago

@sandwich that’s a great thought isn’t it, that we can journal our progress on here for everyone else πŸ™‚ xx


Anonymous
3 years ago

@tracyd, @sandwich, I would love to see that!


Anonymous
3 years ago

@tracyd, @sandwich, My only thought is let’s keep it simple and I would think we would be as interested as anyone to see how each other is doing. πŸ™‚


tracyd
3 years ago

@mbrsinc a single thread each entitled @xxxxxx‘s Lemtrada diary would work so we don’t mix our stuff up in one thread πŸ™‚


Anonymous
3 years ago

@tracyd, @sandwich, I like the concept, but the way this blog quickly pushes titles down, we will get lost. We need to start one title like “Lemtrada, Our Progress” which we can easily find and give a quick status, but also can refer others to individual logs which can chronicle progress in detail under our unique titles. I really don’t want to keep a log as I am looking forward to forgetting MS for a while if lemtrada works well. I have destroyed more brain cells reading and writing about MS than MS itself has killed :-).


Anonymous
3 years ago

@mbrsinc I understand. I plan to walk away from the ms community for as long as possible once done! I mean this in the nicest possible way. It’s just that it’s consumed too much of my thoughts for too long and while I’m well I don’t wish to linger on it.

I mearly meant in my earlier post that hopefully in a couple of months time our wait will be over. Here’s to moving on πŸ™‚


Anonymous
3 years ago

@sandwich, Hear! Hear! πŸ™‚


hannah015
3 years ago

Good luck all, so happy your getting Lemtrada. Fingers crossed mine gets sorted soon too. I will be looking out for your progress


Anonymous
3 years ago

Same to you! Let’s hope it goes well for us all. πŸ™‚


anawith1n
3 years ago

Hi I’m going today to my neourologist to ask for lemtrada it’s been approved here in Australia its Available on Wednesday, I am currently on gylenya for 1 year now and I feel it’s not working. It’s weighing me down if that makes sense. I also going to do 5:2 diet. Which I heard it’s fantastic, I ordered the book for mediterranoan food since I’m Spanish but raised in Sydney. Yes this would be interesting RE: lemtrada is going for everyone. Keep this post up.


Anonymous
3 years ago

You reminded me of a great reason I first was attracted to Lemtrada. I am sensitive to most drugs and the gilenya I am on is no exception. MS is hard enough without having to continually take a DMT that causes me to keep having SEs and for me a poor quality of life! Lemtrada has unique dosing that requires five days of IV treatments followed by another 3 treatments in month 12. No ongoing dosing and continuous exposure to a drug and it’s SEs. At least 80% of the clinical trial patients required no further dosing for 5 years of the trial. The data suggests that the duration may go beyond 5 years and possibly for life. I am looking forward to not taking any additional DMTs but take comfort in the fact that you can take more lemtrada or another DMT if indicated.


us-emma
3 years ago

@sandwich,

I understand the desire to walk away from MS. I chose not to in order to get the word out about Lemtrada.

As you have fewer & fewer MS symptoms you do feel a sense that if only everyone had access to Lem we could all walk away from this disease.

So amazing that you and @tracyd are getting Lem. I will be sending telepathic messages to @hannan015, seems with all her hard work on behalf of others she deserves an infusion date!

I vote for separate updates per person. If anyone wants to hijack My Lemtrada Experience (Lemtrada.blogspot.com) under an alias or real first name, I would be happy to post your ongoing story up there for others to learn from.

I don’t have much to report on myself these days πŸ™‚ but a cataloging of your disease prior & changes over time would be widely read & helpful to many others πŸ™‚

Take care,
Emma


Anonymous
3 years ago

Hannah definitely does! I contacted the specialist commissioner at NHS England at the MS Society to help move things along a bit.

I really hope these delays will soon be a thing of the past.


hannah015
3 years ago

@mbrsinc @us-emma and @sandwich

Thanks all that’s so sweet. I’m just glad more and more people are getting Lemtrada, hopefully one day we will all have it. Xxx


us-emma
3 years ago

Sandwich,

Did you get an actual infusion date?

I know @emzi boyfriend is set for 13 April. I am unsure about @tracyd

I am interested to hear how it goes!

Emma


Anonymous
3 years ago

Hi Emma :-). 18th of May, bed being available. I had a load of bloods took today and a chest X-ray. Hopefully they’ll all come back clear and I’ll be good to go.


tracyd
3 years ago

@sandwich and @us-emma

Snap May 18th is my date too πŸ™‚


Anonymous
3 years ago

Glad to hear everybody is making progress…except me! I am waiting for my neurologist to line up an infusion center with the required certification. I have been patient so far (no pun intended). I may have to jump ship and go somewhere else since I have heard that more early US MSers have begun their infusions and are doing well πŸ™‚


Anonymous
3 years ago

Yea! Just got the word that my neurologist has the certifications in place and scheduled me for April 27th to get me ready. Super happy with this! Cannot wait. πŸ™‚


Anonymous
3 years ago

Brilliant news πŸ™‚


Anonymous
3 years ago

Hi @tracyd

How long did you wait for our TB and other results to come back?


us-emma
3 years ago

Did you have a skin TB test? It should be read in 2-3 days. A blood lest should be back within the same timeframe.

Y’all will be able to support each other! That’s awesome πŸ™‚ and Mbrsinc that is great news!

6 weeks- travel, have some fun and prepare to convalesce! Then be amazed at great things that should start happening for you all by fall!

C’mon @hannah015, your seriously bumming us out- get approved already…! πŸ™‚ jk- thinking of you every day. Your approval is in my thoughts & prayers!


hannah015
3 years ago

US-Emma that made me laugh, I need to get sorted I’m letting the side down πŸ™‚ thank you Hun that’s very sweet. I’m a long way off I think, hospital I’m under haven’t set up Lemtrada still due to lack of beds. I’m thinking of trying to see a dr privately that works at a nhs hospital who could refer me. I was told I was having Lemtrada 12 months ago now so getting a bit daft, especially because neither my gp or neurologist will sign me back to go to work until I have had it despite how far I have come, oh well I shouldn’t moan πŸ™‚ xx


tracyd
3 years ago

@Hannaah015 can they not send you to another hospital where they are ready ? I looked unto using UCH London when Southampton were being slow and they would have taken me without an problem as the closest facility with the capability to provide the treatment


hannah015
3 years ago

Hey @tracyd

I asked my neurologist about sending me somewhere else but he reckons that they would refuse me as I have only officially had one big relapse, but as it left me paralysed down one side temporarily and I was in hospital for a month I would think I would qualify elsewhere. He said in March last year my MRI was awful and that he believed I would have another relapse worse or the same within 6-12 months which luckily I haven’t but I feel another dr would consider me as all the specialists in qe hospital said they hadn’t seen a relapse so bad. Fingers crossed xx


tracyd
3 years ago

@hannah015
That sucks, I’ve not had any other DMD’s, but I am relapsing pretty much every 6 weeks right now, but nothing as bad as what you’re describing, it’s advancing numbness to my entire body and now floppy left leg (foot drop and my knee seems to keep disappearing) I was very clear this is the only treatment I’m willing to consider at this time and if they won’t find somewhere that can do it reasonably quickly I’ll find somewhere myself and send them the bill πŸ™‚


krisp
3 years ago

Hi @hannah015 I was of the understanding you had to be offered it now as a first line? I know they for active MS, so if your brain scan shows activity and you’ve had a big relapse then surely you should qualify?
It’s great when people gamble with your life because of small print isn’t it?
Could you imagine someone saying ‘here’s your new car, it could have brakes to stop it but instead we don’t want to give you them, we’ll wait until you’ve had a bump then we’ll put thhem in!’


hannah015
3 years ago

At @tracyd I’m quite annoyed with my neurologist because back In March last year he kept saying it was the worst MRI he had seen in someone so young and that I needed to get on treatment ASAP but since I was discharged he no longer seems to be in such a rush. I have new lesions since then so they should be sorting it now. He says they are still waiting for approval to get Lemtrada sorted. Which is terrible, everyone should be on this drug now who wants it since it’s been approved my NICE. I tried calling my neurologist again earlier to say I want him to send me to another hospital who does offer Lemtrada cause I feel I have been patient till now but I want to get back to work now. After waiting over 10 months for a treatment he first said I needed he tried to see if I wanted another treatment in meantime which i refused and said I want the best like he advised, I’m getting cheeky πŸ™‚


hannah015
3 years ago

@krisp that’s brilliantly put, it’s exactly like that. Why would they want to not offer Lemtrada straight away to everyone with RRMS as it’s obviously proven for many to be closest to a cure we have. It can’t be money because a year on tysabri costs the nhs Β£120k whereas Lemtrada is Β£54k it seems we are dealing with a postcode lottery problem. Just hoping no one else is having to wait as well, it does seem more people are having it which is good


krisp
3 years ago

@hannah015 couldn’t agree more really, it’s just one of those things that we in the UK enjoy when it comes to the nhs and double standards, I had to pay private to even get an mri! My gp, chiro, accupuncturist all told me lhermittes doesn’t suggest Ms!!
Where have they left it with you currently? I would threaten legal action all sorts if you don’t get what you want, it’s been approved by NICE


hannah015
3 years ago

@krisp it’s awful isn’t it, when I first got diagnosed I lost alot of use of my left leg and arm, I was rushed into a hospital by me with a suspected stroke, I googled while in and I found I had all the symptoms of ms, I told the Drs this and said I needed an MRI and steroids but they just laughed and said I needed to stop googling, at this point I started getting bad spasms on my left arm and still they left me on a trolley in A&e, after they ruled out stroke and brain tumour they did nothing, I discharged myself in the end and had private MRI which confirmed it was ms and I needed steroids ASAP. I then spent 3 more weeks in QE hospital in birmingham where I had 6 days of intravenous steroids, 5 days blood plasma exchange and a further 2 months on oral steroids. I did my own physio cause I felt they didn’t push me enough. I’m back to how I was except bad pins and needles on left side and some pain but now they have just pretty much left me except an MRI every few months to check my brain and the odd contact from my neurologist. I just feel they need to get it sorted now but I don’t want to pay private again if I can help it. Inhermittes I hadn’t heard of so just googled it (thank god for google) and straight away it said it’s linked to ms. What are they doing for you? I contacted nice about it and they said they can’t get involved with individual complaints unfortunately so I contacted my local mp. I will threaten legal action next cause it is getting daft now


krisp
3 years ago

@hannah015 how can they rule all else out and just say get on with it is beyond me! I’m glad you had the sense to get it checked out privately otherwise who knows!
I can usually reason or justify some negligence but the level and the consequences when it comes to misdiagnosis of Ms is unreal!

Where is it your based and why is your neuro or gp not pushing for you?

Currently I’m on a watch and see type of thing, my mri was normal so they’re saying if it is Ms it might well be early or a cis, there was a run of weeks where new symptoms kept adding and coming and going so I guess we’ll see
If I get to a diagnosis and it’s RRMS not progressive then I’ll be following you guys on lemtrada, too many people rely on me to sit by and let it happen

I’m wondering if there’s another avenue you can go down?


krisp
3 years ago

I think if this stops it for at least a decade or two by then you never know where the medical profession will be, plus with biotin, gnbac1, Raltegravir etc all lookin at least half good, you never know


hannah015
3 years ago

@krisp to be honest by time I had private MRI I was completely paralysed down my left side it was quite scary cause I had to be carried into hospital. I am going to threaten my dr with legal action now because it’s not right what’s happening, I was promised Lemtrada 9 months ago and I’m not even close to getting it. I am so glad others are getting it but just feel I should be hearing something now.

I’m based in wolverhampton but under the QE in Birmingham. It’s an amazing hospital so surprised they haven’t got further with Lemtrada. My gp keeps contacting but getting same answers as me

It’s good your MRI was normal but I bet it’s frustrating when you don’t have diagnosis. Just keep healthy and positive I’m sure you will be right as rain in no time. I have found with ms, that keeping fit healthy and smiling makes a huge difference. Exercising every day really helps me with nerve pain.


tracyd
3 years ago

That’s complete and utter turd ….

Time to create a bloody big fuss IMO.

It’s time that the Neurologists stopped regarding Lemtrada as ‘the last resort’ and started thinking of it as ‘the first line of defence. Some of that possibly stems from the same reaction I’ve had from other MS sufferers …… why would you do that to yourself if you could do something less aggressive until it gets ’really really bad’ ….. perhaps they don’t want to offer it because it might appear to be being to aggressive to early …. there’s any number of possibilities but if you’re newly diagnosed and actively relapsing with new lesions it should be the first. A big centre like the QE should not be lagging behind on getting available.

Ask your doctor to make arrangements to have you treated somewhere that has started providing Lemtrada – you don’t have to wait for a hospital to sort out their lives it’s your doctors responsibility to get you into somewhere that provides it wherever that may be.


krisp
3 years ago

Yeah @hannah015 it’s not right that your nine months further on, quote the fact that he number of silent lesions as opposed to outward relapse ones outweighs by something between 2-5 times!
What are they waiting for? It may be worth getting a list of all nhs hospitals that are currently giving lemtrada and telling QE your happy to go there if needed? Maybe that’ll give them a kick up the arsenal


tracyd
3 years ago

@hannah015 Birmingham Heartlands or Staffordshire could possibly also be an option for you ?

I told my Neuro that if she could get me a bed in Aberdeen tomorrow she should book it and I’d pack a bag


hannah015
3 years ago

@tracyd @krisp I asked about going elsewhere and he reckons other Drs might not offer it and it would look bad against him. He feels that as my big relapse in March last year lasted over 30 days he classes it as 2 relapses but other Drs would see it as 1 despite how big it was. But to be honest I think they would offer it as I have active ms with at least 7 lesions and how bad it was. I’m going to phone him in morning and demand a referral. I know Southampton and Bristol do it, I don’t mind travelling for it at all. Thanks guys xx


krisp
3 years ago

@hannah015
That should be classed as one? I’ve had one and it stills going on now after 3 months kept changing up to 2 months and they class it as one!
But if the lesions show dissemination in space and you’ve had a recent relapse then that should be enough?

Let us know if you need extra weight in any form


krisp
3 years ago

@hannah015 I meant could be classes as one
That’s what’s so hard with it I guess
They all have different rules


Anonymous
3 years ago

@hannah015

Did you make headway with that contact I gave you?
I found them helpful. I also rang the MS Society who contacted the hospital too. Whether it did any good or not I don’t know but my hospital is now ready to go

Time is brain.

Have you made a formal complaint and if so what was the outcome?
Have you contacted your local healthwatch and MP?
Have you had a second MRI?


Anonymous
3 years ago

Just re read back and can see you have had other MRI’s which show progression. You would seem to meet the criteria Hannah as its evidenced by either/or a relapse / MRI.

I’ve only had one disabling attack (a bad one I will add) but MRI evidence of a new lesion means I’m eligible.


Anonymous
3 years ago

Would the treatment and timeframe not also come under the 18 week regulation?

http://www.nhs.uk/choiceinthenhs/rightsandpledges/waitingtimes/pages/guide%20to%20waiting%20times.aspx


krisp
3 years ago

@hannah015 @sandwich has got s good point there, but I know from personal experience with knee surgery when I had to wait for 6 months, theres very little they’ll do
But that was knee surgery for a football injury not something as serious as your going through, so maybe worth quoting that


krisp
3 years ago

You guys might want to check this out
Be great if everyone was this reactive to treatment

http://www.golfchannel.com/media/golfing-world-tony-johnstone-player-profile/#

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