kimberley85 25/01/18
Last reply 2 months ago
Lemtrada?

Hi all, this is my first post so I’m kinda introducing myself too, I’m pretty new here although not new to MS. I was diagnosed almost 4 years ago with RRMS. I’m 32 and have 2 daughters age 9 and 2 and I work full time as a support worker for people with complex learning disabilities.
Anyways, my MS is extremely active and I have very regular flares, I struggle mostly with my balance and vision as well as left sided weakness vertigo and fatigue. Iv been on copaxone which didn’t help whatsoever and am currently on gilenya which I am also still having extremely bad flares whilst on including a recent relapse in November where I lost all feeling in my right leg (I have it back now thank heavens!)
So to my question……. my Neuro sent a letter a few weeks ago suggesting a change in medication and asked me to choose from mavenclad, tsabri or lemtrada, after a lot of soul searching and research I decided on lemtrada, I informed my MS nurse who informed me that my Neuro would need to have a meeting with other doctors to discuss if it was appropriate for me but in her words she “couldn’t see them disagreeing with my dicision as I’m a prime candidate for the drug” so as far as I was aware that was it I was just waiting for them to get everything in order and send for me…. fast forward to yesterday and I get a call from the nurse to say they’ve denied me the lemtrada based on the fact it probably won’t work because I’m “young” IM 32!!! And that they want me to try mavenclad instead.
To say I’m devastated is an understatement, I made the hardest decision of my life to choose lemtrada based on the side effects etc because I really believed it would be the start of my new life and as ms free as I’ll ever be to be told that some people who’ve never met me made that decision irrelevant and are ruling my life for me!
Does anyone know if I can appeal this decision? And has anyone had any good results with mavenclad? Thanks so much in advance and sorry for the essay!

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marcyg921
2 months ago

Hi, sorry to hear about what’s happened and I honestly can’t see a reason why you shouldn’t have been given Lemtrada unless they knew for certain it wouldn’t work. As for being young, sorry that is a ridiculous reason to not give you Lemtrada because as far as I’m aware, its better to get it when you’re young and heck, I’m only 25 years old and I’m getting prepared for Round 2 in just over a weeks time. I’m not saying dismiss the other treatments and obviously they must have a reason for you to go on Mavenclad which I haven’t had so can’t judge it but if you feel Lemtrada is the one you want then definitely appeal it, maybe go and speak with your Neurologist again or perhaps look into seeing a new Neurologist.


stumbler
2 months ago

@kimberley85 , give the MS Society Helpline (0808 800 8000) a call and seek their advice. It can’t be a new problem to them.

I also found this page, which is specific to the Bristol Clinical Commissioning Group (CCG).

https://www.bristolccg.nhs.uk/about-us/what-we-fund/how-i-make-appeal/

You may be able to find a specific webpage for your local CCG.


edmontonalberta
2 months ago

@kimberley85

Wow. I can understand your frustration. You are given 3 choices; told to pick one so you do. They respond NO…

With all due respect, this is why we are not allowed to carry weapons when we meet with “so called” medical professionals. Follow stumbler’s advice & good luck.


kimberley85
2 months ago

Thanks for your responses everyone. I’ve spoken to my neurologists secretary and I have an appointment with her next Friday to “talk through” their decision. I’m going to get in touch with the M.S society and get some advice from them. I honestly feel like they are such rubbish reasons for not letting me have it. Iv also just received a letter from them explaining that my lesion load has increased in my last mri so it just doesn’t make sense why they would offer me a less effective medication. The nurse told me that they only have 2 beds for lemtrada patients in my area and they are in high demand so I can’t help thinking that could also be a reason behind it. I’m not normally such a cynical person about people’s intentions but it just makes no sense!


newdave
2 months ago

Lemtrada is a really option, and induction therapy, so it is very logic option for a young lady who wants to be pregnant in the future. We have a lot of long term datas about the efficacy of Lemtrada, it has a very durable effect so definately an option. (It has the best brain atrophy data.) Only one ‘caution’ very important the washout after Lemtrada: http://multiple-sclerosis-research.blogspot.com/2017/01/fingolimod-blocking-alemtuzumab-action.html

Mavenclad (cladribine) also an iduction therapy, which might gonna be good, but we do not know is this effectie or not after 4 years. (We know, that Lemtrada (alemtuzumab) effective after 5 or 10 years…) and its brain atrophy data is not so impressive like Lemtrada. So might be less effetive than Lemtrada, but overally its a highly effetive…

Dont forget, horses and courses, everyone is different but we have only overal datas….

My sister has the same situation. She ok with Gilenya, but she would like to got a chance to be pregnant in the future. Her neuro recommend to switch to Lemtrada, but only after the time when her Lymphocytes counts will be normalized.

So please share with me your decision and further experiences…

Thanks and wish U a bright future, and good health!

David


hollylb10
2 months ago

I had a similar experience a few years ago. I also 32 and was told that as I had probably had MS (undiagnosed) for 10 years I was not ‘Newly’ diagnosed so did not it the criteria.

I was very angry, I went to the appointment feeling optimistic and left feeling like I had hit the glass ceiling and backed into a corner with no escape.

I was put on Tecfidera, as I refused to injection myself. 2 years on I have taken myself off it, I have informed my nurse and also my neuros secretary and no one has been in touch. I also asked for a scan to see if there was new activity and to try and help me decide if I was going to go drug free or try something new. I have been phoning every week and no one has my scan report yet, obviously I am not a priority as it is not life threatening. But I need to have the report to decide what my next steps are.

I feel like they make us think we have a choice and control but really we don’t, and it all comes down to money!

I feel like no one really cares about my choices and my well being, so I will fight it on my own!

I really hope they change their minds for you, don’t back down, keep on fighting it! It’s your body and your choice and I thought they whole idea was that these drugs were here to help us yet they make them unavailable!


kimberley85
2 months ago

Thanks for your replies. @newdave I do hope they figure out a way forward for your sister that enables her to have children. I was on no medication when I feel pregnant with my youngest (almost 3) and I’m definitely not having any more children so that’s not an issue for me. I do believe there are options for people who plan on having children though so I’ll keep my fingers crossed for her.
@hollylb10 I’m sorry that you’re being let down too it’s as if everything is a battle! As if we aren’t fighting hard enough as it is! The thing that annoys me most is that the nurse pretty much told me that they wouldn’t say no to me and as you can imagine having 2 young children and a full time job for the last few weeks I’ve been trying to organise my life around the fact that I’ll be going into hospital for 5 days soon to have the wind knocked out of my sails for who knows how long, only to find out I needn’t of bothered because the decision wasn’t even mine to make in the first place!
I hope that you hear from them soon and they figure out some kind of treatment for you that works. We have enough stress in our lives without having to deal with all of this at the hands of people who are supposed to be helping!


newdave
2 months ago

@kimberley85 thanks! Yes after my answer I read your post repeatedly and found you have 2 children so after all Lemtrada an induction therapy which shut your MS related activity down. It has the best atrophy data’s so if it works well you have good chance to be stable for years maybe decades…
Ocrevus coming soon but we don’t know about it’s long term safety…
Lemtrada relatively safe, but you have a real chance for further secunder autoimmune disease (50%) which is treatable (f.e. thyroid issues).
I wish U the best!


sciencegeek
2 months ago

Hi @kimberly85! Try not to be so despondent. Many researchers in the MS area are not that keen on Lemtrada and see it as a drug that has had its day and will be replaced in the near future with less risky options, which are just as effective.

Mavenclad is a very good option, and as you know much less riskly. Were you also offered Ocrevus? That is, to me at least, a better option than Lemtrada anyway.

However, if you really want Lemtrada, you can always go to another neurologist, anywhere in the UK. I don’t know where you are based, but you can travel anywhere for treatment and you can refer yourself to anywhere and any hospital that you choose. I have changed hospitals to get Cladribine (the active agent of Mavenclad) because my first hospital only offered me Lemtrada when I came off Tecfidera.

If you want to direct message me, I can talk you through how to get the option that you want, and alll the avenues that you can persue to get the treatment that you think is right for you.


sciencegeek
2 months ago

I just had a look at your profile, and see that you’re in Manchester. This is good news, because you have at least 2 good hopsitals and several consultants to choose from.

Get yourself armed with as much information as you can before Friday and go in with a plan to get what you want. If you can take someone with you, that would be even better. It doesn’t have to be your spouse or relative. You can take anyone that you think will help you to put across your point and be firm about what you want.

If you want Lemtrada or a referral to another hospital that will give you Lemtrada then stick to your guns and ask for it. But do be open-minded to the other options, especially Mavenclad or Ocrevus.


kimberley85
2 months ago

Thanks @sciencegeek
There was no mention of ocrevus, I was just “offered” a choice of lemtrada, tysabri and mavenclad. Iv mentioned ocrevus in the past to my ms nurse and he seemed to really dismiss the idea of it for rrms. I’m seen by a consultant at Salford royal so I don’t think I can get a much better hospital in the north west for neurology.
Had I not been given the three options to then have my right to choose taken away and was just offered mavenclad then I probably wouldn’t have an issue, it just seems to me they’ve offered me what I felt was a more effective drug, Iv gone through the motions of setting my mind on taking the risks of side effects for what seemed a more effective drug only to have the choice taken away from me for a rediculous reason based on what Iv learnt since. Also it’s especially frustrating that my nurse told me she thought I was a prime candidate for lemtrada and that she couldn’t see them saying no in the MDT meeting I imagined lemtrada to be the start of my new life.
I’m taking my other half with me to the appointment because I get brain fog at appts and I’m the type of person to just agree to whatever I’m told so I can get out of the fog! He’s brilliant with stuff like this.


sciencegeek
2 months ago

@kimberley85 – sounds like you are all set for Friday then. When you discuss your options, you should keep in mind that you can transfer to Lemtrada after having Cladribine, if the Cladribine does not bring things under control.

I’m currently waiting for an MDT to confirm that I can have Cladribine, but I agreed in principle with the consultant that if the MDT comes back with a negative answer that I can give informed consent for off-label use and do it that way instead. I’ll be furious if I don’t get it after all… I know what you mean about that.

Funny how our situations are opposites – I’ll end up on Lemtrada if my MDT doesn’t give me Cladribine. Maybe we should just swap places!!


kimberley85
2 months ago

Haha I know! We should just swap places!
I got a letter referencing what was said in the meeting and apparently my ms nurse has said she isn’t sure I would be compliant with monthly blood testing! I am absolutely furious! This is the same nurse who pretty much guaranteed that the MDT would approve lemtrada! All because when I saw her at my appointment 2 weeks ago I didn’t have my bloods taken, my bloods aren’t due to be taken yet and I have a separate appointment for that on 5th feb, this appointment was just a catchup after my relapse in November! She’s obviously not looked into that before deeming me “not compliant with blood testing”
I’m really not the type of person to complain, particularly about the nhs as I truly appreciate how lucky we are to have it but I feel so let down by my MS team recently. Iv tried getting hold of the nurse since then to put her straight but they have a 5 working day wait for a callback!


mmhhpp
2 months ago

@kinberley85


I have heard good things about cladribine I would think about it xxx


kimberley85
2 months ago

So I had my appointment this afternoon. My consultant went through all the details of mavenclad with me, I was in there for well over an hour!
She said I can try the mavenclad and if it’s not for me I can always change to lemtrada in the future.
Thanks to everyone who advised me to give it a chance, I went in there with a more open mind about it than I would of done had I not been on here. I think hearing from her the reasons why she wants me to try this first made me feel a little less stubborn about the whole situation and I’m going to see how it works for me. Just awaiting a phone call in the next couple of weeks to give me a date of when I’m starting it. I’m feeling kinda positive about it now to be honest 🙂


sciencegeek
2 months ago

I’m glad it’s working out in a way that you feel positive about. Fingers crossed that I get the same result!


kimberley85
2 months ago

I’ll keep my fingers crossed for you @sciencegeek
🙂


curious-one
2 months ago

@kimberly85 @sciencegeek

I’m in the same boat and really keen to try it. My new neuro wants to stay on mavenclad when it hits Australia in May.

Currently not on treatment at the moment but sing the OMS diet with a few further supplements like ALA and lion’s mane and circa 8000ui of vitamin d. Current EDSS of zero, but have heaps of lesions according to my previous MRI that was taken mid flare back in early November.

In the mean time, I’m being offered plegrity, but don’t like the idea of depression as a side effect!

Also have the option of tysabri and ocrevus from my other neuro that I can start immediately.


curious-one
2 months ago

Woops, that should read get on. In serious need of an edit button here 🙂


kimberley85
2 months ago

@curious-one
Iv heard wonderful things about ocrevus to be fair. Iv been thinking of trying the oms diet for some time, I reallyyyyyy love food though so I know I’ll find it tough. 😂
I also had a very bad flare beginning of November which I’m still not fully recovered from even after 5 doses of methylprednisolone IV! My Neuro showed me the comparison mri’s from one I had during that flare and my last mri 4 months earlier and you could see a massive difference in lesion load and inflammation, she said it was probably caused by my body becoming immune to the gilenya I was on at the time.
It’s a tricky thing choosing medication, especially when there’s a chance you could get secondary illnesses as a side effect!


curious-one
2 months ago

@kimberly85

I had a bad one towards the end of October. 3 days of IV methylprednisolone and 3 nights in hospital. Had lots of weakness and altered sensations. The steroids were pretty nuts.

Got diagnosed in November due to brain lesions and 2 small spine ones.

Currently not on anything, my neuro wants me to start plegridy but I don’t like the idea of interferons. MRI next week to compare what’s happened since October and will see if diet and my supplement stack are doing anything.

I liked ocrevus too, but bit concerned about long term treatment with it and potential pml risk due to it essentially being rituxan.


leicas
2 months ago

Hi everybody,

What about Tysabri? Today the most safe MS treatment for highly acive MS especially for young not only women. 10 years experience without serious adverse events except higher risk PML after 2-3 years in patents with JCV index more than 1,5. But the most efficacy, more than Mavenclad and Lemtrada. The bes way for accidental pregnacy. At least for 2 years the best way for high avtive MS withou immunosupresion. The bigest treated patient group. Mavenclad cca 3500, Tysabri at least 180 000 patients, a lot of pregnances and children patients….

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