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DMD's

Hey Everyone,

Newly diagnosed with RRMS this week with my neurologist and saw the MS nurse the following day. I have a nice hefty leaflet with lots of info regarding DMD’s. I am keen to start, but there are a vast amount to choose from!

Looking for personal experience with them/ info and advice. Also do people tend to go for tablets more than interferons, and could this also be to do with people being less keen to inject?

Thank you in advance

Try posting on everyday living or use the search tool for DMD’s or the meds you are thinking of/being offered. I’m having my MRI contrast tomorrow with my appointment on 08/09 to discuss the findings, recent symptoms and DMD’s so I’ve been looking myself :slight_smile:

I was offered interferons at first so went with that (more explicitly Avonex or Extavia) There was no first line tablet then. I went with the latter (so didn’t need refrigeration). When Tecfidera (DMF) was approved I was offered that and accepted. Trouble with my left hand made injecting more awkward and tablets are much quicker and easier. I don’t have side effect problems with DMF. Another advantage of DMF over the injectables is that it reduces relapses by about 50% as opposed to about 30%

It has asked been asked on the Bart’s blog why injectables are still offered (because there are more effective first line drugs). (Actually, Terifloromide (Aubagio) is about 30% effective too).

How active is you’re MS? I am assuming since you mentioned interferons that you are being offered first line drugs.

Then the other first line option is Alemtuzamab. The IV treatment with infusions, twice the first year and then once a year later. Further infusions if it hasn’t worked - though quite rare. The big advantage is the possibility of stopping the MS for years if not completely (induction treatment). The side effects are more severe so you have to weigh the risk of MS vs the drug.

Is Lemtrada a first line treatment ? I had assumed it isn’t

There are thankfully many treatments to choose from. I initially opted for Rebif as Tecfidera was waiting for approval at the time of my RRMS Dx (June 14) as Neurologist was keen to get me onto a DMD as soon as possible. On Rebif for a year, I did experience increase in fatigue, and bad injection site reactions. Seven weeks ago I started Tecfidera, the first few days were differcult due to flushing and nausea, but after that no problems, touching wood! I honestly don’t know I am taking now. I have gained weight of which my Aunt kindly pointed out, thanks for that!!!

Personally, I would definitely choose an oral therapy over an injectable initially, if I had the choice. MS trust produce a great booklet on treatment choices. I know the side effects listed are scary, but not everyone experiences them. Your MS nurse and Neurologist will be great for advice, and if you try one and don’t get on with it, try something else. Wishing you all the very best. Sarah x

@JanetV Multiple Sclerosis Research: NICE approves alemtuzumab (Lemtrada). The MS Society and MS Trust write that the drug can be prescribed for adults with active relapsing remitting MS (generally defined as having two relapses which have had a substantial effect on health or daily life in the last two years). (The same as the Association of British Neurologists criteria for prescribing interferon and Copaxone until this year (when they became a little more proactive).

The less effective drugs are fine for those who respond to them.

In all honesty this is all very new so I’m not really sure how active I am! I was only diagnosed a few weeks ago, I had my first ‘episode’ about 2 months ago followed quite quickly by a relapse a month ago with a massive amount of symptoms (well seems that way to me) which are still ongoing. I have the booklet from the MS Trust and have just been reading through it now. My app with my MS nurse is in a few weeks so got a little while to get to grips with it it! It’s all a lot of information in a short period of time! Thank you very much for your information!

Thank you for all the information everyone, very helpful! I’ve just finished reading through the DMD booklet.