Frequently Asked Questions

If I go onto DMDs, can I predict how much benefit I will get?

Unfortunately, there is currently no way of predicting how much benefit an individual patient will get from disease modifying drugs before they start taking them. Even after being on disease modifying drugs for some time, because the course of MS is so variable from person to person, it is impossible to know exactly how the person would have been if they had not taken the drugs, and so it is difficult to say how much benefit they have received as an individual.

The average benefit reported in clinical trials from taking disease modifying drugs is exactly what it says - an average across all the people who took part, when compared against another group of people who didn't take the drugs. So when trials have shown that on average, taking disease modifying drugs reduced relapses by about 30% over the first two years, what that actually means is, some people will have experienced little or no benefit, but others will have received a greater than 30% reduction in their relapses.

How soon after MS diagnosis should DMD treatment start?

Recent evidence from a number of trials has shown that interferon beta is more effective when started as early as possible after diagnosis with MS.

Can I switch treatment?

Yes. If you find the side effects of the drug you have chosen unacceptable, the drug becomes inconvenient for you to take or it doesn't work for you, you should discuss changing to another one of the available drugs with your neurologist. You would usually need to try a drug for at least 6 months before considering switching to another.

Can I take a break from therapy?

Yes, but only in certain circumstances because the treatment is designed to be taken on a regular basis. Taking a long break from treatment increases your likelihood of having a relapse. As we have said earlier, women planning pregnancy must take a break from treatment. On rare occasions a change in an individual's circumstance may make it necessary to have a break from treatment. If you feel you need to take a break from treatment for any reason please discuss this decision with your specialist.

What happens if I don't respond to treatment?

It is almost impossible to decide that treatment is providing no benefit for an individual patient, so there are no rigid rules about who should stop taking DMDs. However, the ABN has agreed criteria which suggest that treatment is no longer providing benefit or that the benefit is very limited. If these apply to you, your consultant will take them in to account when deciding whether treatment should be stopped:

1) If you develop an increased number and severity of relapses or lack of relapse reduction compared to the 1 to 2 years prior to starting therapy, especially if MRI shows evidence of disease activity. If your relapses are severe and disabling, some neurologists will consider using another drug such as natalizumab or the unlicensed drug mitoxantrone.

2) Development of secondary progressive MS with loss of ability to walk (an EDSS score of 7 or more).

3) Testing positive for neutralising antibodies to interferon beta, particularly if high levels are present for a long period of time, might strengthen the case for stopping treatment if one of the two above-mentioned features is also identified.

Some people who do not respond to treatment experience disabling relapses. In such cases natalizumab or unlicensed drugs such as mitoxantrone may be offered by your neurologist.

What kind of monitoring tests will I need while on treatment?

Blood tests will be performed before you start treatment with any of the interferon betas, to check for other conditions you may already have.

Blood tests will also be performed throughout the time you are receiving treatment if you choose Avonex®, Rebif®, Betaferon® or Extavia® to check that you are tolerating it well. Your blood will be checked each month for the first three months, then every 3 months for the first year, and assuming that everything is going well you may only need to be checked every 6 months.

If you are on Copaxone®, you will need to be seen by the MS nurse every 3-4 months for the first year to see how you are getting on with treatment, and 2-3 times per year after that (depending on local policy) although you may not need a blood test.

Do these medicines cause problems when taken with other drugs?

Sometimes medicines taken together can interfere or interact with each other to cause a different effect. DMDs can interact with some medicines taken for depression or epilepsy. It is very important if you are taking DMDs that you tell your doctor or pharmacist before taking any other prescription or non-prescription medicines, supplements, alternative therapies or vitamins.

Can DMDs be taken by children and young people?

No clinical trials have been done to look at the effects of DMDs on young people under the age of 18. Although the 2009 ABN guidelines state that these drugs would usually be used in people aged 18 or above, they also state that in certain circumstances and following thorough discussion of the risks and benefits of treatment, neurologists might also consider their use in people under 18 with relapsing remitting multiple sclerosis.

The European Medicines Agency (EMEA) has licensed interferon beta for people with MS aged 12 and above.

I'm a vegetarian or vegan. Do these medicines contain animal animal or human products?

Like many medicines, all the DMDs contain animal or human products, apart from glatiramer acetate (Copaxone®). Interferons are natural substances made up in our body to help protect (or interfere hence the name interferons) against infections and diseases. Hence animal products are needed in the manufacturing process. Glatiramer acetate is entirely free of these: it consists of laboratory made protein molecules (amino acids) that naturally occur in the human body. If you are vegetarian or vegan, this might be important to you. A summary is given in the following table:

All of the disease modifying drugs have been tested on animals before being used on humans.

Do the DMDs contain preservatives?

It depends which one you choose. The following table is a guide:

What if I am thinking of becoming pregnant?

As the effect of disease modifying therapies on the unborn child is unknown, women in active sexual relationships must use reliable contraception during treatment with DMDs, to avoid getting pregnant. Treatment will not be started if you are pregnant.

If you are planning to have children in the immediate future, you may decide to delay starting treatment until after the birth of your baby. This is something which you will need to discuss carefully with your neurologist.

If you are already using interferon beta and then become pregnant or plan to become pregnant, you will again need to have a careful discussion with your neurologist about the potential risks associated with staying on, or stopping treatment. If you are already using glatiramer acetate, you will need to stop taking it before becoming pregnant.

Women must not breastfeed whilst using DMDs, as the medicine may be passed to the baby in the breastmilk.

How would I get my supply of needles and drug?

If you decide to start on DMDs, there are a number of options. You may choose to collect your drug from your local chemist. However all of the drug manufacturers in the UK offer a free delivery service. This service ensures that the drug and sharps containers for used needles are delivered to you at a preferred address on a specified day and time.

This service also contacts you to check on your supply and reminds your centre to send on your prescriptions to them so you don't run out of supplies. As part of the service, they also remove your sharps bins of old needles. If they have urgent medical problems, patients should contact their health professional team (MS nurse, neurologist or GP), not the service provided by the drug manufacturer.

What kind of help will I get learning how to do the injections?

Giving injections is like many new skills - it takes patience and practice at first, but with some help most people find it quite straightforward.

Many neurology centres offer teaching sessions run by an MS specialist nurse to teach patients how to self inject. In other cases, your MS nurse may be able to visit you at home to show you the technique, or arrange for a home care nurse to visit you at home and train you in how to give the injection. The home care nurses are generally paid for by the manufacturing companies and have been specially trained to offer support to people starting out on DMDs.

In any case, you will not be on your own. Talk to your specialist or MS nurse about the options available in your area.

You might also like to listen to what Moira and Carol said in the Listen to others section.

I'm really scared of needles. Can I still go onto Disease Modifying Drugs?

Many people are afraid of needles at first, but find that with a little practice and help, they find injecting themselves really quite straightforward and not nearly as bad as they thought. There is lots of help and support to get you started.

If you do dislike needles but still want to go onto DMDs, you might want to discuss using an 'autoinjector' with your MS nurse or neurologist. These are available with all the DMDs and are a bit like a pen which you put the needle and syringe inside - you then place it on the site that you want to inject and press a button. With most types, this means that you don't need to see the needle as it goes in.

Listen again to Moira and Carol in the Listen to others section of the website to find out just how easy injecting can be once you get started.

What if I can't do the injections myself?

It is very rare that a person is unable to inject themselves after some initial training and help. However, if you prefer, it is possible to teach a partner, friend or carer how to do it for you. It is also possible to ask your local GP practice nurse or district nurse to do the injections, but this could restrict your freedom and the flexibility of choosing your own timing when to take the injections.

Is it OK to travel on these therapies?

Definitely, yes. Starting on disease modifying drugs will not affect your ability to travel or take a holiday, but just means that a bit of planning and preparation is required first.

If you are going away, you will need to work out how much drug you need to carry with you, but be sure to take along a few spare doses just in case of any problems or delays. Each of the drugs comes with its own travel storage 'coolbag' and injection kit which you will receive when you start on treatment. These allow safe storage of the drugs at the required temperature during travel.

However, all of the drugs can be stored at room temperature for a limited amount of time - ranging from a week to two years. Further details are given under the 'Injections' page earlier in this website, and of course all the instructions you will need come with the drugs themselves.

When travelling by air, it is suggested that you keep your DMDs and injection kit with you at all times. This is a good idea not only for safety, but also because an aircraft's hold can be extremely cold during flight and can freeze your drug.

It is a good idea to contact your airline prior to travelling to see if they have any specific rules for people travelling with injectable medication. Due to security restrictions regarding taking needles on aeroplanes, if you are flying, you may need to get a letter from your prescribing centre that outlines your treatment to present at the check in desk. Your MS Nurse can provide you with documentation which confirms the reasons why you are travelling with your medication supply.

What if I decide not to go onto DMDs?

You may decide that you would prefer not to take DMDs at the present time. If you decide not to start treatment you can agree to monitor your condition with your neurologist. Your neurologist will be able to advise on symptom management. You may also wish to explore with your neurologist participating in one of the clinical research studies taking place in your area.