Frequently Asked Questions.

If I go onto disease modifying drugs, 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.

Under what circumstances would I have to stop taking DMDs?
Some people find that they need to stop treatment with DMDs, if they find that the side effects are intolerable for them, or if they plan to get pregnant (in which case treatment must be interrupted temporarily).

In addition, the following events are likely to indicate that the drug is not proving to be effective, and the ABN recommends that if you experience them, it should be considered whether to stop taking treatment:

• Two disabling relapses, as defined by the examining neurologist, within a 12-month period
  
• Secondary progression with an increase in disability observable over 6 months
  
• Loss of ability to walk, with or without assistance, lasting for at least 6 months

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

One of the purposes of the Department of Health risk sharing scheme is to see how effective the individual drugs are in people with MS over a long period of time. Data on patients who switch treatments cannot be used for this purpose. But if the drug you are on doesn't seem to be right, you should discuss this with your neurologist.

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?
If you do not respond to these treatments you will be advised to stop taking them. This is outlined in the ABN stopping criteria above. Occasionally, a small group of people who do not respond to treatment experience disabling relapses - in such cases drugs which are not licensed for MS in the UK such as Mitoxantrone may be offered by your Neurologist.

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. However, to date there are no reported cases of DMDs having these interactions with other drugs. Even so, it is 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. However, although the ABN guidelines on DMDs do not cover children, the Department of Health's Circular for the implementation of the Risk Sharing Scheme (HSC 2002/004 issued in February 2002) says "Neurologists may use their clinical judgement on whether to admit patients under 18 for treatment under the scheme."

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 a contraceptive pill during treatment with DMDs.

If you are planning to have children in the immediate future, you can delay the decision to start treatment until after the birth of your baby. If you are in treatment and make a decision to start a family you are advised to stop treatment 3 months in advance of trying to become pregnant. You should remain off treatment during the pregnancy and restart treatment once you have stopped breastfeeding. If you decide not to breast feed you can restart treatment after delivery.

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 NHS professional carers (nurses, neurologist), 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 (apart from Avonex in its prefilled syringe form) 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 away, 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.