Last reply 1 year ago
Hit it hard and early but NHS doesn't ag

Hi all, is ‘hit it hard’ an accepted approach in the UK or not? I thought it was but am only being offered first line DMTs by NHS in accordance with the official criteria (recent scan shows no change)

I even thought I had read somewhere that Lemtrada was recommended for CIS, but can’t find a source for this now. Am I imagining it?

References and sources much appreciated.

Thanks

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


katy79
1 year ago

Hi @teal,

NICE approval of lemtrada requires a diagnosis “active” RRMS – I.e. A diagnosis of RRMS with support of at least two episodes in a two year period. This can, I think, be evidenced either by clear clinical history of relapses or by MRI evidence – but this is a box even the neuros who are prepared to support aggressive early treatment with Lem need to tick.

In my case, my initial diagnosis of CIS in March 2016 (based on numb toes) was converted to a diagnosis of “active” RRMS when a second MRI in June showed one new inactive lesion. I’d had no new symptoms and a number of the lesions shown in my initial scan showed signs of fixing themselves. My neuro was prepared to use this, supported by the possibility that an episode of vertigo I suffered in 2015 (diagnosed at the time as BPPV and seemingly fixed by epley) was an initial clinical episode caused by a brain stem lesion, to justify signing me up for Lem and to tick the box – but he made it clear when I was waiting for my second MRI results that he needed this for me to get the treatment. Was an odd feeling hoping for that one little extra bit of damage to get the treatment I wanted – so I can understand how frustrated you must be feeling.

Sorry it’s not the answer you wanted. It’s such a frustrating process. Hopefully you can try and focus on the positive of there being no new relapses – and the drug options available?

Good luck xx


Anonymous
1 year ago

Thanks Katy79. Unfortunately, I do have distressing new symptoms but as there’s nothing new on MRI I am upset by the ‘clear’ result. Funny when you get to the point when ‘active RRMS’ is what you want to hear.

Glad you are doing so well on Lemtrada.


Anonymous
1 year ago

Hi @teal

I had exactely the same question yesterday and am in the strange position of almost wishing for active RRMS to have access to treatment. Otherwise it just seems like spending more time in limboland.

I did a bit of an internet search and found this document that outlines the guidelines for eligibility for DMTs in England: https://www.england.nhs.uk/wp-content/uploads/2013/10/d04-p-b.pdf

Keeping my fingers crossed for you – I’ve had a horrid month MS-wise but my MS nurse just confirmed on the phone that a large part of it is probably that I’m not coping yet with my diagnosis. Could that be the case for you too? Or holiday stress?

Big hug, thoughtfultraveller xx


heids
1 year ago

Hi @ teal,
I had numbness, tingling etc over 5 years ago and was told by the Dr it was probably peripheral nerve damage-it eventually went away after a few months! Then in October 2015 the sensations and pain started in my feet again and travelled up to my chest with what I now know was the ‘MS hug’! At this point my Dr referred me, put me on gabopentin and I waited. I found out the results of my MRI in March 2016 and was told I had MS! I was still getting tingling & numbness but came off the gabopentin to see if it made a difference and at the time it didn’t so I stayed off it!
In May last year I had another MRI but this showed no active MS. So no treatment offered.
In July I started getting perculiar sensations and numbers in my face and l’hermittes had returned but tried not to think about it too much as it was quite mild! Went to the Drs in September and he put me back on gabopentin-helps a bit! Anyway in December I decided I’d had enough of my face and spoke to my MS nurse who referred me to the relapse clinic. The Dr said it might be a relapse but I would need another relapse to be considered for any DMT! I still have the strange face (!!!) and it gets frustrating at times and I worry that if left untreated it could progress to secondary rrms, and then it will be too late! I get told that I’m too hyper vigilant with symptoms which can lead to anxiety and that could be what is making the symptoms worse!
Apologies, for the length of this and it is probably of no help to you at all but you’re not on your own, I’m still just on the gabopentin, it makes a bit of a difference so I should be grateful for that!

Take care,
Heids


Anonymous
1 year ago

@heids – exactly in the same boat in terms of head space, worrying and anxiety. Horrid!

However, I think it is good news if you’re not deemed ‘sick enough’ to receive DMTs – they all have terrible side effects so I guess the doctors have to do a cost-benefit-assessment. There is no point in treating a rather inactive MS but having kidney failure or something else nasty in a few years time because of DMT side effects.

xx


Anonymous
1 year ago

Thank you so much everyone. It is strangely comforting to know I’m not alone in this although it’s horrible that so many of us have to go through it.

I find it frustrating that my symptoms are so bad and I am getting new ones regularly yet I can only have first line DMT.

Life is so unpleasant now, I can’t do anything much without becoming really ill, but I do understand that my MRI results are strange and I only want a DMT if they are sure it is RRMS, but I wonder if I am actually PPMS.

I am also very concerned that no one actually believes I am having new symptoms now because of the stable MRI. I am very close to just giving up entirely. GP, MS Nurse and Consultant are all good people, except they just play pass the parcel with me. No one has the time, expertise and experience to listen to how I’m affected and try to treat the symptoms. It’s always wait for your appt with x, which always takes months, then something will be done to make you feel better, but nothing ever is, there’s just another appointment to wait for and so it goes on.

It’s hard to look after yourself when the system treats you as so unimportant. Part of me wonders if I should just go all out to stress my body into a big relapse.


heids
1 year ago

@ teal,

Crikey, don’t do that…stress needs to be limited! I know how frustrating this can be and I too am relatively new to all of this and get lost in my own headspace! I sometimes feel as if I’m a hyperchondriac when I start listing symptoms, especially as my last MRI showed new activity but I am very fortunate that I have a great neurologist and MS nurse who does a lot in the field of research. I have been referred for a Mindfulness course, which I begin in February, maybe that is something that would be useful if you could get referred?!
As @ thoughtfultraveller says there is no point pumping our bodies full of drugs, which could have hideous side effects, if we don’t need them. My only concern is that an MRI is a snapshot of a moment and since that moment was over 6 months ago and I’ve had new symptoms since then how does anyone know if there has or hasn’t been new activity?! Also there are lots of threads on here that say treatment sooner rather than later is better!
Sorry, I’m not doing a very good job of reassuring you! Rather than make yourself ill in order to try and bring on a relapse could you request a second opinion? Or maybe find a local MS support group where you could speak to others?

Take care.
Heids


francleone
1 year ago

I have found from my experience that the NHS would rather deal with cure than prevention, be firm with them from the outset as otherwise you will find yourself having SPMS and then they definitely won’t give you anything to help!


pinksho
1 year ago

Teal, don’t dismiss the 1st line treatments. My last scan a few years ago didn’t show any active lesions (although it did show some old ones that weren’t on my original scan) so I couldn’t have Tysabri. I was put on Reif which is awful and when I gave up on that, I was given Tecfidera instead.

2 tablets a day, manageable occasional side effects and no relapses for years, when I thought I was relapsing every other month. It did take 3+ years for me to even be offered any treatment. My symptoms caused by damage are helped a little with pregabalin.

Hope you get somewhere soon x


ginsozzled
1 year ago

Hi, just to say, the fact your are offered first line treatment is good. They may be all you need. Some people have excellent outcomes on them and do not need to progress to stronger treatments. Others have to stop due to unwanted side effects. Take the DMT your specialist is suggesting, see if it works for you, if it does , great. If it doesn’t, change it. All treatment is good (I know some disagree with that)


spreader
1 year ago

@teal Surely rrms is not always active? That is the point of it being relapsing/remitting.
I would push for what you think is the best option for you. I also agree with ginsozzled that treatment is good & change to better options as suits.

Everyone – I am appalled by the issues people have being listened to, & feel very lucky to have found the health care that I have.
I have been on 2 drugs trials in 11 years – the 1st being after my 1st symptoms, & to determine if early treatment with Copaxone was beneficial.
The 2nd trial (tecfidera) after a relapse with 6.5 year remission – active compound of a proven 50% better efficacy, but to test for side effects.
I have MS related eye issues, but am being helped by the hospital ophthalmology department, who have prescribed me prisms. It was these prisms that allowed me to ride a bike again.

My MS nurse replies to e-mails quickly, my Neurologist makes himself available to me when required & the medication delivery service to my house has never failed.


Anonymous
1 year ago

@heids – no, won’t do that now. Spoke to neuro today about it and he said he doubts even if I stopped taking HRT and all vits and ate rubbish food and stressed myself to the limit that I would be able to provoke a relapse that would show on an MRI. Because MS is really, really unpredictable.

Tell you what though, I’m not going to bother with eating really healthily anymore! And there will be more gin in my life.

I’ve been doing mindfulness for months. It is good, but I think maybe I like it too much, it has become the only real escape for me and I just want to stay in that ‘not thinking’ mode all the time, so I have stopped for now.

I’m confident that my neuro is really good and he communicates well with me, he is straight about the unknowns and uncertainties, so I know he has an open mind, he is also one of the least conservative out there, so a second opinion wouldn’t get me anywhere and wouldn’t change that my scan hasn’t shown any new lesions.

Facial symptoms are awful, aren’t they? The new ones in my face are really depressing. They pull my mouth down and even if no one else can see it, it makes smiling feel artificial to me. I know there is research proving that what your body does physically can affect your mind and emotions, so I am pretty sure this feeling of having my mouth pulled down is contributing my depression, and that when it is resting it is in a position that is unhappy by default, rather than neutral. And the pain in the roof of my mouth is horrible.

It’s affecting social interaction with people a great deal, it takes so much effort now just to keep my face in ‘pleasant’ mode so I don’t give the wrong impression about what I am feeling.

Neuro and I agreed today that my symptoms and my cervical lesion indicate RRMS, so I am probably going to take one of the beta-interferons and see him again in six months. The idea is to stay on it for a year, I think and see where I am then.


Anonymous
1 year ago

@francleone I think the key is to lobby our MPs about it. MS neurology is massively under-resourced and under funded. It doesn’t get shouted about like cancer treatment does, I think because it used to be a ‘diagnose and adios’ disease and the general population doesn’t know enough about how we can be helped now.

Anyway, I wrote to my MP explaining that recent medical advances mean that if it was better resourced, a substantial number of us could be treated quite effectively and kept in employment and out of the care system, saving money in the end. This is a real opportunity for us, having a Prime Minister whose mother had MS might just get our voice heard if the message can get to her.


Anonymous
1 year ago

@pinksho thanks for that. He suggested Plegridy, but didn’t seem that interested in which one really, wants me to discuss with MSNurse.

I just don’t want to end up on a First Line until I get SPMS when they think that Lem might prevent it entering the secondary phase – I suppose Ocrelizumab might be available to me if that happens, but I was worried when they reported the other day that there are going to be strict criteria for it, as NHS can’t afford to give it to everyone with SPMS.


Anonymous
1 year ago

Hi @ginsozzled (great name btw) the thing is that some think Lemtrada might prevent progression to SPMS. I am older and don’t have time to fail other DMTs, nor do I want to rack up damage to kidneys etc from successive DMTs. I am also worried about rebound relapses between DMTs and during any wash out period, should I be lucky enough to eventually be accepted for Lem.


francleone
1 year ago

Hi Teal,

Thanks for your response and I hope you are well.
Unfortunately I have followed this up as much as my patience will allow; met my local MP, helped with MS Society profile, local radio, etc.
I’m afraid to say it’s all lip service from my experience.
Best things to do is look after yourself as best you can and attend all your appointments.
That is the best way to regulate your condition, swim, do yoga or pilates, do whatever you can when you can.
Eat lots of greens, reduce your salt & sugar intakes, be sure to top up Vitamin D and Omega 3.
You don’t need to overhaul things dramatically just be aware of what you consume.

p.s. Laugh and have lots of fun!!!


heids
1 year ago

Hi @ teal,

I’m glad you have a good relationship with your neuro. I have a great MS nurse but because she’s a research nurse she has stopped doing the clinics so I saw someone different yesterday. I was greeted with:’ They’ve booked too many people in but I’ve probably got 10 minutes if that’s okay?’? I left feeling completely deflated, frustrated and unimportant!
We briefly spoke about the facial symptoms and I mentioned that I feel like I’m dribbling from one side of my mouth and he said to up my Gabopentin. We briefly talked about fatigue and poor concentration and he is going to recommend amantadine, although it’s not something offered in my area!
I too am worried that if nothing is done treatment wise I’ll end with SPMS! I don’t want to push drugs into my body for the sake of it but equally I do worry about what the future might look like! I also
know we need to live in the here and now but try telling my head that! I will look forward to the mindfulness and being able to escape from my head and the world!
Happy gin drinking…think I might need to take it up (don’t drink…and gave up chocolate…guess it will be the huge bag of crisps then but after a run of course! ??

Take care,

Heids


Anonymous
1 year ago

@heids gosh, can you still run? How wonderful. I hate not being able to exercise or dance or even walk round the shops like I used to. Hate this disease.


lucyh
1 year ago

Dear @teal

Mixed feelings here…I’m glad you got so many responses which show you are not on your own, although that in itself shows how mysterious this disease is, even to the ‘experts’, so we end up feeling unheard etc.

It’s confusing when you mention new symptoms and the MRIs look fine…really…it can be like that and it has happened to me; then you have another MRI and you’ve got, for example, three new lesions on your spine.

I’ve been told in writing I’m not getting any DMTs, yet I have the three new spinal lesions mentioned above; however, they are not active and the DMTs are only for active lesions (I’m open to correction on this point). I’ve no idea how to catch this at an active stage so I can get some/ANY treatment.

SO glad to hear that @spreader gets such wonderful treatment (and sorry about @heids ‘s treatment …I can say I’ve a decent MS nurse..although I feel I am kept in a holding pattern rather than actively treated for MS)….looks like we will all be checking out a move to where you live Spreader!!

Take care, lucyh xx


heids
1 year ago

@ teal,
When I became ill again over a year ago and befor diagnosis I was very over weight for my short 5ft 1″ frame and I decided I had to lose weight because I didn’t want to be told that all these perculiar sensations were because of my weight! I’ve lost over 5 stone and in July last year took up running! I am lucky, touch wood, that my symptoms are strange, uncomfortable sensations, fatigue, poor concentration (& crap memory) and bowel issues that I won’t go in to…a long with anxiety (& depression)-my mobility hasn’t been affected so I know that I am lucky! I also figured that I don’t know what the future holds/if my mobility will be affected so move whilst I can!
I hate what this disease has done to my head…how it consumes me but the nurse says it’s still early days and part of the process!
X


heids
1 year ago

@lucyh,

It is so confusing isn’t it when you see people saying treat it as soon as you can to try and prevent further damage yet it has to be active at the time of the MRI?! My nurse (my usual one who is absolutely lovely, not who I saw yesterday) did tell me that the MRI is a snapshot of that moment so that fact that you’ve got three new lesions surely shows that there has been some new activity?! I had a relapse (possibly!) in December but was told I would need another one within the next year to be considered for DMT!
It is all a little frustrating! ?
Take care
X


Anonymous
1 year ago

@lucyh – Have you had a second opinion? And a lumbar puncture? I can’t understand why, if you have evidence of relapses disseminated in time and space within the two year period that you wouldn’t be offered a first line DMT at least.

It is so confusing.


Anonymous
1 year ago

@heids for what it is worth, my bowel problems fixed themselves spontaneously a couple of weeks ago, that’s almost exactly a year from when they started, so there is hope for improvement.


heids
1 year ago

@teal,

I can live in hope although there are a few psychological issues attached to my bowels! ?

X


sandwich
1 year ago

Hi @teal

I haven’t read all the replies so don’t know if this is of use but I’ve learnt a fair bit about CIS, Lemtrada the NHS system in general.

I was diagnosed with CIS and wanted to get on a DMT ASAP. After much todo, policy reading and changes made to who I wanted in my “MS Team” I was eventually prescribed Rebif. With CIS you are only eligible for Copaxone and the Interferons. Furthermore while these can be considered, having CIS is not a given right or automatic go ahead to start.

I’d read starting a DMT early could delay conversion to clinically definite MS. It was also a tactical move on my part as having breakthrough disease while on a lower efficiency drug would (I hoped) enable me to get on a better one quicker when the time came. I also thought being on a DMT would help me stay in the system and get quicker access for support. I also had regular MRI’s with the view to spotting new activity ASAP. After about a year on rebif an MRI showed 1 new inactive lesion. I’d not relapsed but it was enough to: A evidence clinically definite MS. B evidence active disease while on a lower efficiency DMT, C- Jump start the process for Lemtrada.

These documents helped me:
http://pn.bmj.com/content/early/2015/06/20/practneurol-2015-001139.full
https://www.england.nhs.uk/wp-content/uploads/2013/10/d04-p-b.pdf – this is a bit outdated now but may be still relevant.
https://www.nice.org.uk/guidance/ta312

Remember not everyone with CIS goes on to develop MS hence the decision to start a DMT should not be taken lightly and without due consideration to the risks and potential benefits. I had much discussion with NHS England at the time around what defines high risk and the updated ABN guidelines above do give a bit more info in respect of this.

Another option is to wait and have regular MRI’s to see if they show change before making the decision.
Good luck. I found CIS a hellish place to be.


Anonymous
1 year ago

Thanks @sandwich, that is really useful. Hope you are doing well on Lemtrada.

I ‘know’ several people with a cervical lesion who have decided they have Transverse Myelitis and just stopped there with no DMT and put new symptoms worsening disability down to that. I chose to have the LP, which tipped me into probable MS.

However, my symptoms have changed over the year with new ones every six weeks. I expected this to show on the MRI, but it didn’t, although there are small spots. Neuro said they sound like relapses and may not always show on MRI. He dx RRMS on this basis.

I also had episodes 17 and 11 years ago and MRI showed damage, but that remained stable.

As far as I understand it, cervical lesion makes it more likely that I will progress to MS and that I will have greater disability.

My current lesion has changed my life and my body entirely. I haven’t been able to work for 9 months, I can’t do any of my hobbies, I can’t even vaccuum the carpet or change the bed, for three months I couldn’t lie or sit down for more than two hours so didn’t sleep, there have been days when I couldn’t leave the house because of the steps. It was hell. I don’t ever want to experience another one of those.

Added to my psychological issues around my sister having had MS, I have decided that early treatment is worth the risks.

If I had brain lesions instead of cervical, or fewer symptoms, or a less terrifying experience this year, or if I hadn’t watched my sister decline so rapidly without treatment, then I might see it differently and choose to wait and see. I think it’s worth the risk, but wish there was more info about which First Line to choose. I’m very thin, so I suppose injecting is going to be tough, which might be why he suggested Plegridy. I am concerned about the increased depression risks though. Although I wonder if I am actually depressed or just really, really unhappy. I still want to do things, but am devastated every time I find my body won’t let me. Which seems a perfectly sane reaction to me!

Best of luck with your treatment.


lucyh
1 year ago

Dear @teal and @heids, thanks for your replies. Yes, confusion and frustration abound. I truly hope we all get a bit of ‘enlightenment’, or plain and simple help this year, in whatever form!

I’m on the OMS diet, although wheat grass was recommended as being a brilliant all-rounder (by a non-MS friend, not a healthcare professional), so I will grow some of that when the organic seeds and compost arrive (no, I’m not new-age-y; nor am I trying to sell you any goods!!!); I’ve heard you need a pretty good juicer to get the good stuff out of the wheat grass. I have also sought out some hyperbaric oxygen treatments, which I hope to start next month at a local MS Centre. I’m also hoping to meet up with some other PwMS soon; get to have coffee with those who really know what it’s like.

It’s a matter of trying these things rather than doing nothing. Who knows? (and I mean that last comment most sincerely!!).

Take care, lucyh xx


Anonymous
1 year ago

@lucyh it is worth trying. I find some diet changes stick and some don’t, but I have a theory that your body knows what it needs so if you don’t like a diet, then it’s maybe not for you but you won’t know unless you try. I used to have a lot of dairy, then cut it out and now have much less. The same with wheat.


seanachai
1 year ago

Hi Anonymous , can you PM me please.


stumbler
1 year ago

@seanachai , a username of anonymous indicates a member who has removed themselves from the forum. 🙁

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.