MS Medication FAQs

The safety of stopping any disease-modifying drug (DMD) safely is different in every individual case, so this decision should not be taken without medical advice. There is limited scientific research into this topic, but one study found that younger people have a higher risk of returning MS activity when stopping DMDs than older people with MS.

Injecting medication manually is best, rather than with the automatic devices. It is important to warm the syringe to body temperature first by holding it in your clenched hand for a few minutes. It is also important to pinch a piece of skin and lift it up before injecting into it.  Medicine injected with the skin flat often goes too deep. To avoid site reactions with sub-cutaneous injections, it is important to use the correct injection technique.  In the video below, Professor George Jelinek shows how to inject correctly. Many people injecting sub-cutaneous (SC) medication for MS develop site reactions, like lumps, weals, itching, redness or bruising.  This is usually due to injecting too deep (into muscle) or too shallow (into the skin itself). The right place for the medication to go is just below the skin, in the space between the skin and the underlying muscle.  This space is hard to find reliably if the skin is stretched out during injection. Pick an area where there is some fat under the skin such as the abdominal wall, the skin needs to be grasped between thumb and middle finger and lifted.  The needle is then introduced perpendicular to the top of that wad of skin and inserted all the way to the hub. If using an autoinjector, set the depth at maximal depth, as lifting that piece of skin guarantees the injection will not go too deep with a standard needle like the one on the Copaxone injection.  Inject relatively slowly, as rapid injection causes pain, and once injected, remove the needle quickly, and then let go of the skin.  Dispose of the syringe and needle safely.  Most people do not require heat or cold packs with this technique, and very few develop any site reactions. 

This video demonstration below was performed at one of the Gawler MS Retreats and shows the correct technique:

In this video, Dr Jonathan White talks about Copaxone, other disease-modifying drugs and how to stop them. Jonathan has also answered a series of other frequently-asked questions, which you can see here.

 

Dr Jonathan White talks through what people with multiple sclerosis should expect when using a private doctor for a B12 injection.

 

When considering the use of a disease-modifying drug (DMD), there are various factors that someone with MS should consider, including:

When should I start?

Should I start medication straight after diagnosis, on the basis that the earlier I start, the better the potential long-term outcome, or can I hold off and implement lifestyle changes to see how well I can manage my own MS?

Which one should I take?

There are an ever increasing number of DMDs. The ones on offer by your MS team may reflect their availability in your area, and on their suitability for your individual MS

What benefits can I expect?

All DMDs aim to reduce the frequency and severity of relapses, and some of the newer generation also have greater evidence for reduction in disability progression over time. What are the risks and potential side effects? Generally speaking, the more effective an MS drug, the greater the risk of serious side effects, but each DMD has a different side effect profile.. Some of these are potentially very severe, and must be discussed with your MS team before starting any treatment.

How will it fit into my lifestyle?

Some treatments are self-injectables that need to be refrigerated, others require you to attend the hospital or treatment centre for infusions at time periods ranging from every 4 months to 6 or 12 months.

How will this fit with your lifestyle, your work, your ability to travel to and from treatments?

What monitoring will I need?

Almost every DMD requires regular blood monitoring, ranging form every 4 weeks to every 3 months while on treatment. In the modern treatment era, your MS team will likely want you to undergo an MRI scan regularly, to ensure that the treatment is working, and to recognise potential complications of treatment at an early stage.

What about starting a family?

Over time, doctors are realising that many of the DMDs are safer in pregnancy that previously thought. But some must be stopped before trying to conceive of female e.g. fingolimod, teriflunomide, cladribine, and need different wash-out periods. In men, the only DMD to be aware of if trying to conceive is cladribine, which can affect sperm for 6 months from its last dose

Each medication is delivered differently – some can be consumed as tablets or capsules, given once or twice daily. Others can only be administered by self- injection, ranging from daily to several times each week. Intravenous infusions are the newer DMDs and given through a drip over several hours. One is given every 4 weeks, others every 6 months and another over several days, 12 months apart.

There are a number of medications already available. but there are always new treatments emerging. Some of the most commonly used disease-modifying drugs are: Copaxone, Gilenya, Lemtrada, Tecfidera and Tysabr, but this varies from location to location. There are currently 12 disease-modifying drugs (DMDs) licensed for people with MS, but not all are available or suitable for everyone - look in the medication section for more detail.

Yes, but there are preparations that you should make before setting off so that you save yourself unnecessary hassle on the journey. When going through any security checkpoint, it is advisable to have plenty of information about your medications and any additional equipment available. You can do this by having a letter from your doctor about your medication, and keeping all original labelled packaging to hand. It is sensible to take more medication than you will need during your trip, in case your luggage gets lost.