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NHS England withdrawing funding for DMTs - Public Consultation

It’s been quite a while since I visited the Forum and I hope you are all keeping well. This may be a subject that has already been discussed or that you are aware of but it was brought to our attention at OH’s annual review this morning and has me worried so I thought I should share it with the community.

NHS England are looking to withdraw funding for DMTs.

"Suggested common stopping criteria for all DMTs

The current DMT should be stopped if any of the following criteria are met:

  1. No reduction in frequency or severity of relapses compared with pre-treatment phase following adequate exposure to the DMTs (which varies for each DMT but should be a minimum of 6 months).

  2. Intolerable adverse effects of the drug.

  3. Development of inablility to walk (EDSS 7), persistent for more than 6 months, due to multiple sclerosis. (This affects us)

  4. Confirmed secondary progressive disease with an observable increase in disability for more than a 12 month period, in the absence of relapse activity, and an EDSS of 6 or greater (except for the rare phenotype of relapsing-progressive multiple sclerosis)

Criteria 1 and 2 might lead to switching to an alternative DMTs. Criteria 3 and 4 will lead to stopping all DMTs.

We note that past criteria have included pregnancy, breast feeding or attempting conception, but we note increasing evidence that some DMTs may be considered safe in these situations.

We propose that stopping DMTs should lead to continued care within the MS team or transfer of care to services which can provide appropriate support, such as neuro-rehabilitation."

For the full document Google: NHS England Specialised Services: Recommendations for an NHS England algorithm to use disease-modifying drugs to treat multiple sclerosis.

Public Consultation closes 5 May 2018

I followed the suggested Googling and browsed a lot of the documentation. It is a bit technical for my pea brain but I think I got the gist.

It seems that a lot of knowledgable people have undertaken significant research to try and develop a “regular , repeatable” process to try and ensure some consistency in the approach to treatments and therapies offered by NHS clinicians. I am no big fan of reducing anyones options, but I do recognise that the resources are finite, so waste should be avoided. It is very easy to become swayed by a “bullet point” or shouty headline, but I am reassured to think that the professionals may follow a consistent path when trying to work out a treatment plan.

I also understand that as people and patients we are not always consistent in our response. I understand that MS is also mainly inconsistent in how it works, so there will always be a place for “Yes but, or No but” for an individual but if the balance of probability suggests that a treatment is unlikely to be effective then we need to be confident that our clinicians are not just being accountants.

I will include the link here if other people wish to look for themselves.

https://www.engage.england.nhs.uk/consultation/specialised-services-algorithm/

Mick

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It looks fairly sensible and reasonable to me. I was interested to see that my neurologist had seen and commented on the algorithm. And I trust his judgement on DMDs. He was prepared to keep me on a DMD for as long as it might possibly have done me some good. It was only after I essentially ran out of options (because of side effects) that he reluctantly conceded that I’m now SP and so it’s not a bad thing that I can’t take a DMD. And I am EDSS 7. So I think there’s a fair amount of judgement calls included in the algorithm.

As Mick said, ‘there will always be a place for “yes but” or “no but” for an individual’. And I think sensible MS consultants will find that they can make the algorithm work for their patients.

Sue

As I see it, there’s a difference between stopping a treatment that’s proving ineffective and withdrawing funding for DMTs. The problem is knowing when a treatment is ineffective. If relapses continue or worsen, or the side effects are unbearable, then obviously the drugs aren’t working. But when there are no relapses it’s impossible to know whether it’s because of the drug or whether the disease is taking a break.

Currently I’m on Gilenya/Fingolimod. I haven’t relapsed in about 7 years, apart from a few months of Uhthoff’s Phenomenon. So my neurologist assumes the drug is working and I continue to take it. But i have no way to prove that it’s working.

I wonder if the guidelines for starting a DMD have altered -(see earlier thread)

Hi everyone I need some advice. Just been diagnosed with RRMS not on any treatment as yet. Consultant was talking about DMTs and the side effects that might out weigh my symptoms. What do you all think? Are you all taking DMTs? Shall I wait to start taking them? Very confused.

Hi Alison and welcome

I’ve been on the old fashioned Betaferon, one of the original flavour DMDs for about 15 years and wouldn’t be without it. The whole point of them is to reduce the frequency and severity of future relapses so why wait? That next relapse might floor you for months, or it may have little effect at all but either way, it is the unknown.

Get all the information you can from reputable sources, not just browsing the internet! Don’t be put off by side effects, you may not get any at all. I had flu symptoms during the first few weeks but paracetamol took care of them and the benefits of controlling relapses by far outweighed them.

Best of luck with whatever you decide. It is all new ground for you just now but these boards are a mine of useful information from folks who have been round MS for a long time so make the most of all the support and information here as well.

Take care

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Thank you Val for your reply, it’s all a bit scary at the moment, its the Unknown. Going to speak to the MS specialist at the hospital but it’s a mine field when you research all the different treatments available.

When the consultant mentioned side effects your mind goes into over drive and, at the moment I am feeling pretty good.

Will keep researching and getting as much info as I can. Thanks again.

According to the Barts team early treatment is associated with better outcomes.

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Hi Alison

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

As Whammel said, early treatment with a DMD is associated with fewer relapses. Which ultimately equate to less disability.

A disease modifying drug (DMD) is supposed to reduce the number and severity of relapses. Each drug has an average relapse reduction rate. Equally, each drug has the potential for side effects. The more effective the drug, the greater the risk of side effects.

Having said that, in general, either you are very well monitored to ensure you are not at risk of a really nasty side effects, or the kind of side effects you could get are easily recoverable from (and these are monitored too).

Without a DMD, you could have bad relapses and suffer permanent nerve damage. This is what’s happened to me and many others like me, either the DMDs weren’t available to us, or the side effects made the drugs impossible (both have happened in my case).

In your position, do some research about the drugs, talk it over with your MS nurse, your friends and family and make the decision that a) is right for you, and b) you feel happy with, as regards the risk of side effects versus the potential benefits.

And feel free to come back on here and ask for help with particular drugs, what people are on, or have been on, what side effects they had and how they feel about the drug they are on.

Good luck.

Sue

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Thanks Sue for your reply, I think once I speak to the MS specialist and we talk about drugs and what’s available for me I will feel better. It’s just the unknown at the moment, and there are so many different drugs out there. But one thing has become clear, “don’t delay in taking the DMDs” .

Alison,

Even if you choose to take no DMD’s, do not delay your research & decision. When I was diagnosed (1991) the perceived wisdom was take no medication except for steroids after a relapse. Much later on in my MS history I was told that had I taken some of the available DMDs earlier I could have avoided relapses and some of the consequences. On the other hand I may have had other issues if I had taken the DMD. That decision was not given to me.

My recommendation to you is do your research, talk to family , friends and trusted medical professionals and finally to yourself. With as much info and opinions as you have gathered work out your own personal scale of risk & priority then make a decision, follow it and try to listen / observe how YOUR body responds so that you can continue to manage your options.

I eventually tried some powerful drugs after looking at the stats about side effects, risks and potential benefits, and having decided I was prepared to take a risk up to a value of (?) [my value and your value might be vastly different]

If anyone could give you a 100% definitive answer it would be easy.

I wish you all the very best

Mick

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Thanks Mick for putting a different spin on things, I am looking into different DMDs at the moment. Lots to consider but thanks for your honest opinion.

Alison, the other thing I forgot to say was whilst being sensible about diet & exercise do not let your condition dictate too much.

I know that for me dairy products are not great but I love cheese and chocolate too much to cut them completely.

Mick

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Hi Mick

Yeah I am trying, I have started having actimel yoghurt drinks, drinking plenty of water and making sure I have plenty of fruit and veg. I have just signed up for a yoga course, and I enjoy swimming, my weakness is in my arms especially my elbows, they ache and my arms feel heavy. So I asked my consultant should I stop exercising, as I didn’t know if I was doing more harm than good. He told me to carry on.

But like you said, I still want to enjoy life and it needs to be a balance. I haven’t noticed if any foods affect me, to be honest I didn’t know my diet could affect me. I have a lot to learn!!!

I am waiting for an appointment with an MS specialist at the hospital, I think I will also be introduced to a MS nurse, I am hoping to get lots of information. I have also found a local support group which I need to go and visit.

Alison

I’m sure Professor Giovannonii would not agree.

Gavin Giovannoni‏ @GavinGiovannoni Aug 2

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Early treatment can make a big difference to long-term prognosis in #MultipleSclerosis http://msbrainhealth.org/referral-and-diagnosis/press-release/figure-the-difference-that-early-treatment-can-make … #MS

George

Hello out there, I need some advice please, just been to see my specialist to discuss drug trials, anyone heard of, or taking Alemtuzumab or Tecfidera as these are the two drugs on offer for me. I have listen to what he had to say with regards to the facts and figures and side effects, and read the bumf, but wanted to hear your views as well from real people who have experienced these drugs first hand rather than the profession take on them.

Hi Alison,

For me it’s Tecfidera. My first DMD was called Rebif which I had to inject 3-4 times a week. Very easy but left horrible injection marks. So now taking a tablet twice a day is a winner.

Side effects were minimal and soon passed. Slight upset tummy which was resolved by having some cereal with the Tec. Totally gone now only lasted a couple of weeks. Also mild flushing which really wasn’t a problem and has also gone.

I also have a slight rash on both my cheeks - they are very small areas. Luckily I am not very vane and they don’t bother me. BUT whether these rashes are Tec related I really don’t know

i hope you get the right help and support to make your decision

Min xx

Hello Alison

That to me sounds like a strange choice. They come from different groups in the chart of DMDs, Tecfidera is part of the ‘More Effective’ Group, having a relapse reduction rate of about 50%, and Alemtuzumab (aka Lemtrada) from the ‘highly effective’ category, with a relapse reduction rate of about 70%. See https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more information on these drugs.

Not only do they have different relapse reduction rates, they are also delivered to the body in completely different ways. Tecfidera is an oral therapy, you take two pills a day and it’s an ongoing therapy. Lemtrada on the other hand is an annual infusion. Generally 2 infusions, a year apart, but some people have a third infusion the following year.

Together with relapse reduction rate comes the risk of side effects. Which of course can be more serious with the increased benefits.

To be honest, if it were me, I’d opt for Lemtrada. And take the risk of the side effects. I remember first hearing about Alemtuzumab (in 2002 when it was called Campath), and wishing I could take it. It was still a very long way away from licensed in those days though. And by the time it was available, it was too late for me.

And of course, we are all different. You need to be happy with the choice you make and the risks you feel happy taking. There are still benefits and risks to Tecfidera, but these are probably less for most people than Lemtrada.

You’ll need to research both drugs, and talk to your MS nurse as well as you’d family and/or friends. Make sure you know what is involved, what the benefits are and the risk of side effects. Read other people’s posts about the two drugs. Look out for posts by Katy79 who’s written quite a lot about her experience with Lemtrada. But equally, there are many people who have been on Tecfidera for several years and are very happy with it.

You should be sure you are happy and confident about the drugs you take. If you start out with a less effective drug (like Tecfidera), you can always change your mind later.

Best of luck.

Sue