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DMD drugs - What to choose?

Hello everyone,

I have been diagnosed this week and have been told that I have to think about options for treatment.

The neurologist explained that my brain scans (I had 2, one in July18 and one in Jan19) are good but he suspects that I had 2 (possibly 3) attacks since June18. I am feeling relatively well at the moment and only experience mild pain in left arm and feet. The option of no treatment is also possible. I can wait for my next brain scan (in a couple of months) and see if more lesions appeared.

I have been sent me a brochure listing all the MDM drugs but I must admit that it’s a lot to take in!

I was wondering if anyone has advice on how to make a decision? Or on what to avoid?

Thank you so much in advance

Hello

If you have active relapsing remitting MS (and it seems that you do), starting a DMD is sensible. Obviously you still have a choice of whether to wait or not, but the general wisdom is to start as soon as possible. You never know when a big relapse could come along and wallop you. I don’t mean to scare you, but it’s the reality of bloody MS.

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The decision aid lists all the currently available DMDs. You won’t get a completely free choice, it depends on exactly how ‘active’ your MS is deemed as being. Also, the neurologist will have their own views on what drugs are best depending on your specific case.

The way to view the various options is to weigh up the benefits, ie the relapse reduction potential, against the costs, ie possible side effects. All drugs have the potential for side effects, you just need to find the right one for you.

So essentially the better the relapse reduction rate, the greater risk of side effects. For example, out of the ‘Moderately Effective’ group, all but Aubagio are injectables. The injectables are the older drugs, sometimes with newer tweaks, so Avonex for example is Beta Interferon 1a, and is delivered by a weekly intra-muscular injection. This is now more usually used as Plegridy, a subcutaneous injection once a fortnight. All of the Moderately Effective drugs have a relapse reduction rate of about 30%. The injectables do have side effects, but are generally manageable. Personally, I found Copaxone to have no side effects at all, so long as you rotate the injection sites. The different one out of this group is Aubagio, it’s a newer drug and is a daily pill. Again, as a personal opinion, I wouldn’t take this drug. It still has a 30% average relapse reduction rate but comes with a long list of potential side effects.

Then theres the ‘More Effective’ group. This includes Tecfidera, which is usually available to everyone eligible for a DMD. Again daily pills, but a better relapse reduction rate of about 50%. It has more possible side effects than the injectables, but for most people, these are manageable. You need to sandwich the pills between food, so eat porridge (for eg), take the Tecfidera, then eat toast. This stops stomach related issues. There is also the possibility of reduced lymphocytes, a type of white blood cell which fights viruses. This is checked for very regularly, if your lymphocytes go too low and don’t recover, you have to stop taking the drug.

Tecfidera is supposed to be most effective when it’s the first DMD a person has taken. (I used to have a link to the research on this, but the link no longer works!) Many neurologists favour this over the other drugs as a first DMD, unless your MS is ‘highly active’, in which case, there’s Mavenclad (aka Cladribine), or Ocrevus. Both look like good drugs, with manageable side effects, and if you’ve been having lots of relapses, or relapses affecting motor functions (eg walking), and you have the option, they both have extremely good relapse reduction rates, particularly Ocrevus (average 70%).

What you need to do is find out what options you are being offered by your neurologist, then read up about the drugs, their possible side effects and find out peoples experience. You can do this by simply typing the name of the drug into the search bar of the Everyday Living part of this forum. You could also have a look at shift.ms, another forum where there are a lot of users of the newer drugs. The idea is to find a drug that suits you and your lifestyle, one that has good potential relapse reduction rates, but with as few side effects as you can manage.

Best of luck.

Sue

Thanks so much for your message Sue! It is really helpful to read about your advice and experience with the various drugs.

I must admit that I am still a bit taken aback by the recent diagnosis and I find it difficult to consider any treatment, especially as they are all long term. I understand the aim of taking a treatment as a preventative manner but it’s still very new to me. Also, I fell ok(ish) at the minute so it’s even more tricky to imagine the future.

I will have an appointment with the MS team soon which I hope will help me find a bit of perspective. I am also checking out information online as you advised.

Thank you again, I really appreciate the time and effort you took to reply to me in such detail.