Dear All, I have been diagnosed with MS and seeing the neurologist, there was so much to take in. He sent me away saying that he would give my Dr a course of steroids. Are these DMDs? What are DMDs? Should I take them? Any advice would be good. X
Steroids are not Disease Modifying Drugs (DMDs), no. Steroids help speed recovery from a relapse (and they can do that very well); they do not seek to alter or disrupt the course of the disease process itself.
To put it another way: steroids help here and now and DMDs help longer term. To use spilt milk as an analogy: steroids help mop up the spilt milk that is making a mess right now, while DMDs aim to limit the amount of milk that gets spilt in the future. Both are useful, but they have different jobs to do.
I am very sorry about your MS diagnosis.
Very nicely put Alison.
Thank you. Can I ask too? The neurologist said that it would be too early for other drugs. Should I have talked about DMDs, because I read that early treatment is best.
thanks again x
Sorry to hear of your diagnosis. Hopefully the steroids will help you with a speedy recovery through this initial relapse (I like the spilt milk analogy).
If you have a definite diagnosis of MS then it’s not too early to think about DMDs - however, the neuro may need some further time to identify how “active” your MS is (and to confirm it is RRMS) - as this will dictate what drugs are available to you. For example, a number of the “moderately” effective drugs (copaxone, rebif, avonex, betainferon ) will be available now. These are injectibles that typically reduce relapses by 30%. You need to demonstrate “active” RRMS to qualify for tecfidera (a “more effective” DMD in tablet form reduces relapses by c.50%) or Lemtrada (a “highly effective” DMD that reduces relapses by over 70% - but has some punchy risks. Two sets of infusions a year apart). Active RRMS means evidence of two relapses within a two year period. Another “highly effective” DMD, tysabri (monthly infusions, punchy side effects) may be available if you have “highly active” RRMS - which requires evidence of two relapses in one year.
Choosing a DMD is quite complicated - so def worth thinking about. They all have different efficacy rates, side effects and modes of delivery and you need to choose the one that is right for you. MS Trust has an excellent decisions tool which is the best place to start getting your head in the game.
I was diagnosed last year after an episode of numb toes in March. A follow up MRI in June showed I had one new lesion compared to my March MRI (I had no new symptoms and the numb toes were better). I was pleased with this new lesion as it gave me grounds to argue for a diagnosis of “active” RRMS and for lemtrada as my first DMD. This was a conversation I’d been having with my Beuro from Day 1 so he knew the strength of my feelings and that I understood the risks. My MS scared me more than the side effects of the drug - and I wanted to fight back against it fast. I received Round 1 in August last year and am waiting for Round 2 next month. I’ve had no further relapses, and an MRI last month showed no evidence of new disease activity (or no new lesions or enhancement on the old lesions). I’ll never know whether I would have had the same outcome without the treatment/ on a different drug, but I’m happy with my choice and positive going into round 2.
There are others on this board who have equally positive experiences of other drugs - it’s about finding the right one for you.
Good luck - and remember to take time to take care of yourself. The first few eeeks post diagnosis, trying to get up the learning curve of what this could all mean and landing your plan of attack, are stressful scary times.
Dear K, thank you. You know so much x
It sounds like the neurologist is comfortable with diagnosing MS and giving steroids at present. But chances are they will diagnose you with relapsing remitting MS, assuming that is, your body responds positively to the steroids.
That is the point at which they should start discussing DMDs.
At which point you’ll be as well to have a basic understanding of what a DMD does and what your options are. Katy is brilliant at explaining what is what with regard to DMDs. So the only thing I would add is this link: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid it might help you to decide what DMD to go for assuming you have the full choice available to you.