Ask the expert: Disease modifying drugs


21 October 2019

There are now 14 disease modifying drugs (DMDs) being used to treat MS in the UK with more in the pipeline. With such a wide range of drugs available, finding one that's right for you and your MS can be a challenge.

To answer some frequently asked questions about DMDs we spoke to MS nurse advisor, Nikki Embrey who sheds light on how you know whether a DMD is working and talks about some of the side effects people worry about most.

Your questions answered

What is the difference between a DMD and a DMT?

Nikki says: A disease modifying drug (DMD) or disease modifying treatment (DMT) are the same thing. DMDs are mainly given to people with relapsing remitting MS to reduce the number of relapses and their severity, and to slow down disability progression. There is also now a DMD for primary progressive MS (Ocrevus) which has recently been approved in England and can reduce progression of disability.

What are the most common questions you get asked about DMDs?

Nikki says: The most common ones are: Is it working? Is it helping me? Do I need to carry on when I don't seem to be having any relapses?

The problem with DMDs is that people can't see the benefits until maybe a year into treatment when they look back and think, ‘Oh wow, I haven't had a relapse over that time and I probably would've done if I'd not been on treatment.' If you're on a DMD and you're not having relapses, to us that says it's definitely working. This may be supported with MRI scans indicating no disease activity or progression of disability.

How does an MS team monitor how well a DMD is working for somebody?

Nikki says: People who are taking a DMD will be regularly reviewed by their MS nurse and will usually see their neurologist annually as well. Your MS nurse will look at whether you have had a relapse, what symptoms you're experiencing and if there has been any progression. Sometimes MRI scans will be carried out, but it's dependent upon the treatment as to how often an MRI scan is undertaken.

Your MS nurse or neurologist will monitor your disability level using the Expanded Disability Status Scale (EDSS). Before you start on a treatment, you'll have an assessment and be given a score. By recording that score on an annual basis we will know whether disability is increasing or whether it's staying stable. If the score is increasing (showing higher levels of disability) and you're still having relapses that could mean you're not doing as well as expected on that particular DMD and it may be time to consider escalating to a more effective drug.

There are so many disease modifying drugs available now, people have far more options. In days gone by we just had interferons or Copaxone but now there are more drugs people can switch to if they are having problems with side effects.

Nikki

Hair loss is a side effect of some DMDs. How bad is it and does it get better?

Nikki says: Generally the hair loss people experience isn't clumps of hair that fall out and cause bald patches. Instead it's better described as hair thinning.

It's not possible to predict whether you'll experience this as a side effect or not. Some people will not get any hair loss, other people will feel that when they shower and wash their hair there is more hair in the plughole. It's very individual for
each person.

Although you may notice your hair getting thinner in places it will generally regrow over time.

If you are worried about experiencing hair loss as a side effect, I would say it's not a reason not to start on a DMD but it is an individual decision. It might help to speak to your MS team and ask how common this side effect was in clinical trials of the drug you're considering.

The main drug hair loss is associated with is Aubagio, but there have also been less common cases in beta interferon, Gilenya, Tecfidera and Lemtrada.

Hair loss can also be caused by other factors too, such as stress, anxiety or drugs for treating pain.

If you're on a DMD and experiencing hair loss which is bothering you, it does need to be reviewed by your MS team.

If someone's experiencing quite troublesome side effects, how long should they stick with the DMD before trying something else?

Nikki says: It's going to be very individual to the person but I would certainly say give it at least six months on a treatment before making a decision with your MS team about changing to another drug. However, if you're having really intolerable side effects and just cannot continue on the drug then you might want to consider changing a bit earlier.

There are so many disease modifying drugs available now, people have far more options. In days gone by we just had interferons or Copaxone but now there are more drugs people can switch to if they are having problems with side effects.

Is there anything you can do to minimise your chance of getting flushing on Tecfidera?

Nikki says: Firstly it's important to make sure that the flushing isn't an allergic reaction (hypersensitivity or anaphylaxis). It's best to discuss this with your MS nurse. They will ask for more detail about when it's happening, if there are any other more worrying side effects that may be occurring, or if it is just flushing after taking the tablet.

If you experience flushing after taking Tecfidera, sometimes altering the timing of the doses can help. In other cases it will disappear on its own, possibly after a few months of treatment. However, if it is intolerable, some people have found benefit from taking a low dose of aspirin. It's best to discuss whether this would be suitable for you with your MS nurse.

Some people out there could be on a DMD but aren't. What do you think they should be doing?

Nikki says: We do know that there are many people out there that are not on disease modifying treatments that probably should be. This might be the case for someone who isn't under the care of the MS specialist nurses and isn't being reviewed regularly.

The recommendation now is for people with MS to start treatment with a DMD as early as possible to improve long-term outcomes. Therefore my recommendation for people who aren't on a DMD and are not sure whether they may be eligible for one would be to get in contact with your local MS team, either directly if you've used the service before or through a referral from your GP.

Nikki Embrey is an experienced MS nurse who has been supporting people with MS for over 21 years. She was one of the first MS nurses to be appointed in the UK. Nikki is now the MS Trust's resident MS nurse advisor, supporting the Enquiry Service and Specialist Nurse Programme, reviewing MS Trust information, and mentoring new MS nurses in post.

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