We asked a number of people with MS, consultants and specialist nurses about the questions which come up most frequently.
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If I go onto disease modifying drugs, can I predict
how much benefit I will get? 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. |
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Under what circumstances would
I have to stop taking DMDs? 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:
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Can I switch treatment? 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. |
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Can I take a break from therapy?
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What happens if I don't respond
to treatment? |
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Do these medicines cause problems
when taken with other drugs? |
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Can DMDs be taken by children
and young people? |
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What if I am thinking of becoming
pregnant? 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. |
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How would I get my supply of
needles and drug? |
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What kind of help will I get
learning how to do the injections? 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. |
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I'm really scared of needles.
Can I still go onto Disease Modifying Drugs? 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. |
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What if I can't do the injections
myself? |
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Is it OK to travel on these
therapies? 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. |
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What if I decide not to go onto
DMDs? |