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Getting treatment for MS

“I feel like I got quite lucky with picking my MS treatment. My neurologist in London gave me time to consider my lifestyle and explained the risks/effectiveness of each DMT.”

There isn’t a cure for multiple sclerosis but there are a range of treatments available to help you live a normal life by reducing symptoms and slowing MS progression.

Article medically reviewed by Karen Vernon an MS Nursing Specialist at Salford Royal Foundation Trust.

Getting on an MS treatment as early as possible after diagnosis is highly likely to lead to improved long-term health outcomes. As challenging as it may be to decide on one treatment course out of several different options, don’t put off your decision. If you need support, speak to your medical team, and reach out to the Shift.ms community which has thousands of MSers who have stood where you are now.

Our guide will help get you up to speed on how MS treatments work.

If you’re newly diagnosed with MS, watch the interview below where  four of our community members discuss how they started MS treatments and how happy they are with them.

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Treatment for MS

Multiple sclerosis may not be curable yet but that doesn’t mean that MS can’t be treated effectively, reducing the impact symptoms have on you and allowing you to get on with life. MS life expectancy is similar to that of someone who doesn’t have the condition, though there might be some challenges along the way.

Treatment for MS is used to alleviate the effects of particular symptoms and also reduce the severity, and the frequency, of relapses. This is usually achieved through the use of drugs for MS, known as disease modifying drugs (DMDs) and disease modifying therapies (DMTs). 

These can help to manage and treat multiple sclerosis, and are currently more effective if you have relapsing remitting multiple sclerosis (RRMS) than progressive MS. There are alternative treatments available if you have primary progressive multiple sclerosis (PPMS) or secondary progressive multiple sclerosis (SPMS).

Focusing on diet and exercise, and making positive changes such as giving up smoking and reducing alcohol consumption, are really important too. Before you start treatment for MS, it’s worth doing as much research as you can on all your options. 

It’s a personal decision but widening your knowledge is helpful, and can be useful to know what questions to ask. Talking with other MSers to understand their experiences with medication for MS can really help too – though bear in mind everyone reacts differently to treatment.

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How do I get treatment for MS?

When you receive your diagnosis for multiple sclerosis it is highly likely that treatment options will have been mentioned then so you can start thinking about your next steps. You may not be able to make a decision straight away but a follow-up appointment will likely be arranged to discuss treatment and options.

The neurologist or specialist who diagnosed your multiple sclerosis is best placed to talk to you about treatments, based on the type of MS you have, your age and general health. You might also have a chat with an MS nurse.

When should I start treatment for MS?

When you start treatment for multiple sclerosis is really down to you. It’s your body, and your decision, ultimately. But the latest MS research makes it clear; the sooner you start, the better your long-term health prospects will be.

Even if you currently feel fine, it’s still advisable to start treatment. MS can affect you quickly and it’s better to be proactive than reactive – for many people, the earlier you start treatment, the sooner it can help to slow the progression of MS.

Treatment typically starts with a conversation with your neurologist or an MS specialist to discuss all your options. Not every MSer is eligible for all treatments but your MS team will discuss your options with you. If you do decide on a course of treatment, you’ll discuss terms such as:

  • Administration – how you take the treatment, which is usually by swallowing a pill, having an injection, or infusion
  • Efficacy – which is how the strong the treatment is
  • Potential side effects – though treatment affects everyone differently, some people may get headaches, itching, dizziness or nausea
  • Frequency - this is how often you have to take the treatment

MS and disease modifying therapies

‘My neurologist recommended three DMTs to me (Ocrevus, Tyasbri, Tecfidera) and patiently explained the ins and outs of each of them. I chose Ocrevus because a single infection every 6 months felt like the least disruption to my life and is one of the higher efficacy DMTs’. @billyshift

Drug treatments for multiple sclerosis, called disease modifying therapies, are prescribed for the treatment of MS. DMTs are used mainly to treat you if you’re living with relapsing remitting multiple sclerosis – they can reduce the number of relapses you have, and also make the impact of them less severe when you experience a relapse. So, in short, you relapse less often and if and when you do, they don’t feel so bad. 

Traditionally, DMTs haven’t been effective in treating someone living with progressive MS but that has changed in recent years with a few drugs being licensed to help manage PPMS.

There’s a huge range of DMTs available. Aubagio, Kesimpta, Mavenclad, Mayzent, Ocrevus and Tecfidera are some of the best known but it’s estimated that there are around 30 or more DMT treatments available around the world. Availability of certain DMTs will depend on which country you live, and sometimes eligibility criteria can be different between home nations or states. Your neurologist will recommend DMT options for you, based on a few different factors such as your age and overall health. NHS England states that patients eligible for high efficacy drugs will need to be discussed at a MS multi disciplinary team meeting, so this could potentially add a time delay to starting a DMT. 

‘I am between Cladribine and Ocrevus but not sure which one to settle on. My consultant leans towards Ocrevus which makes me think this is the right option.’
@Samg276

Side effects of MS drugs

Just like MS symptoms, everyone is affected differently when on treatment for multiple sclerosis. So, someone might have zero side effects with one type of DMT and someone else might find they need to switch because the medication for MS is causing complications. That said, there’s an increasing focus on putting you on the correct type of treatment first and reducing the need to potentially switch.

Just as there are a wide range of MS symptoms, there are a wide range of possible side effects to medication, too. You might be lucky and experience none at all, or have mild side effects that fade when your body gets used to the new drugs. 

‘I was offered Gilenya when it was very new. My reading showed it had good results and possible remyelination. After 8 years I was offered a change in treatment, but a second opinion advised me to stay with Gilenya and I have been glad that I did stay with Gilenya. Zero side effects and virtually no new activity.’ @Notwaving

We can list some of the possible side effects you might experience alongside your treatment for MS but honestly, they’re not much different to the kind you could also have with lots of other medication. You’re best off asking your neurologist or MS nurse when you discuss DMTs. Remember to report any potential side effects from your drugs to a member of your MS team. And of course, you can read about how our MSers are finding their treatment journeys here in the Shift.ms blog.

Depending upon what symptoms you have, their impact on your day to day life and severity, your MS team or doctor may at times suggest medication to help with the symptom you are experiencing. This would be discussed with you before starting the medication.

Other types of MS treatment

Besides DMTs, there are other types of treatment for multiple sclerosis available. Let’s summarise some of those here.

HSCT treatment for MS
Physiotherapy and rehabilitation for MS
Lifestyle changes to improve MS

Getting support during MS treatment

It’s really important that, whatever the course of treatment for MS you follow, you have support throughout. Even if you have a close-knit group of family and friends, living with multiple sclerosis can feel lonely, especially during periods of treatment.

Remember, you’re not on your own. At Shift.ms, we’re an online community of people living with MS, who are here to chat, support you and give you advice and guidance from a personal point of view. It’s a friendly, welcoming place to talk, share and learn.

On a professional level, you can find support in the form of counselling and therapy. Ask your MS nurse or doctor (often your GP if you’re in the UK) for further information or look up specific MS counselling services from the likes of MS-UK or MS Therapy Centres. Organisations such as MIND can also offer more general mental health support.

Sources:

https://www.nhs.uk/conditions/multiple-sclerosis/treatment/

https://www.mssociety.org.uk/about-ms/treatments-and-therapies

https://www.nationalmssociety.org/For-Professionals/Clinical-Care/Managing-MS/Disease-Modification

https://www.mstrust.org.uk/information-support/ms-drugs-treatments/how-is-ms-treated