Picking a DMT

March 15, 2016

Disease Modifying Therapies, more commonly known as DMTs –  like me, you might find them to be a bit of a minefield!

Over the last few years I have tried a few; I started with Rebif; yhis was a disaster! Each injection gave me flu like symptoms straight away, which would wear off just before the next injection and then they would come straight back. The only way I could get by day to day was with Cold & Flu tablets but having these every day took its toll on my body, my live particularly, so I had no choice but to stop it.

Next up was Copaxone, this at the start seem like a cure. I felt normal, my relapses reduced and at times I forgot my MS all together. Everything seem to be going swimmingly until around April ’15 when I had the worst relapse I’ve had in the 8 years of MS. The daily injections weren’t too bad they just worked their way into my daily routine and for the last few weeks I ended up on the new dosage which meant taking it every other day, which was great, relatively speaking…

However, the bad relapse I had, did not seem to go away, despite steroids, and more steroids, so we have now got to the stage of picking the next line of Therapy – this is now the next level. The doctors like to call it “second line treatment”.

Katherine and I had gone in to see my MS nurse at the emergency clinic and the long and short of it is we came out with handfuls of booklets for second line treatments. In my eyes these are all “sales brochures” for each of the drug companies. Some I found helpful and others were just a little too pushy. I used the MS Society and MS Trusts DMT Booklets as well as my own online research. I’m also in a very fortunate position that my uncle has spent 30 years or more in pharmaceuticals so he could spend time with us explaining how he felt the different drugs worked and the pros and cons of each.

Initially I picked Tysabri. It is a month infusion and appears to be one of the most tried and tested of the second line treatments. However, it comes with some quite serious (potentially fatal)  side effects and risks, but after some tests the chances are reduced. It was a very hard decision to come to, and I know that my family were supportive, but very worried.

Just before giving consent for the treatment my most resent MRI Scan was reviewed and it showed that I didn’t have any new lesions, which was great news, but it did mean that I didn’t meet the NHS’s guidelines and therefore didn’t qualify for this treatment. This was really frustrating in a lot of ways, but really the news of no new lesions cannot be ignored, and I know my family were really very relieved that I didn’t have to go down this route.

We had a good chat with my consultant and he mentioned Lemtrada. It seemed much less risky. It is given over a 5 day period and then nothing for a year (and then in for 3 days the next year) – I liked the idea of that, I would have to go in for a monthly blood test, but that would be ok. We all sat down and discussed it and decided to go with it.

I picked it after a lot of research and talking with everyone around me; my MS team at the hospital, my partner, my family, and by using all of the literature and information available online.

My advice to you is take your time, don’t be rushed or forced in a decision – what works for me might not work for you… It’s your call.

If it helps maybe try making a list and sit down with your family and discuss it, a little like I did.
I looked at the side effects and also the implication on my daily life – did it fit in with my lifestyle and my family?  I looked at the pros and cons, or as my uncle says, the risks and rewards…

By Nick

Nick is a dedicated step-parent of 2, and loving partner to Katherine. An animal lover, life long football fanatic, self confessed petrol head/car nerd and wannabe adventurer, Nick also enjoys playing with lego (not just with the children), coffee, running, reading and quiet family time. Having worked for 10 years as an expert Audi mechanic and then as an estate agent for 3... a change of pace means Nick now works with Katherine in their animal care business, whilst also developing Adapting Life into a thriving support network and social enterprise. Nick's aim is to help support and inspire those affected by chronic illness to live a fulfilled life, through sharing his story, personal coaching, alternative therapies, and lots more.

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