This research piece is regarding a study which shows that disease progression in RRMS patients was slowed with early DMT intervention (specifically high-efficacy DMTs). In the piece it’s also mentioned how many physicians still use an escalation approach, where you need to have a certain amount of relapses and/or lesions and/or disability progression, in order to be eligible for the more effective drug. This approach has long frustrated me; I’ll describe more of my experience to explain why.
I was diagnosed with RRMS in 2011 and I’ve tried three different DMTs in total. When I was first diagnosed, there weren’t as many DMTs available as there are now, and unfortunately my first DMT (Rebif), wasn’t too effective for me. I then heard about Gilenya, which aside from being a fairly high-efficacy drug, was also easier to administer (one pill per day, rather than injecting three times per week – fantastic!)
However, despite me being eligible for the drug, I had to fight for it. My hospital trust didn’t administer the drug at the time, and I first went to a different hospital to be assessed. I can’t remember exactly how long I had to wait, but I think it was the best part of a year. My hospital trust did start administering it in this time, so I was moved back, and there was a delay. I think this was mainly because the first dose had to be taken in hospital because your heart rate needs to be monitored, as it slows down to less than 60bpm, so they needed a Cardiologist to be available.
This delay meant that my disability had worsened. I eventually had to move from Gilenya to Lemtrada, as Gilenya was affecting my liver. I needed a washout period (not being on a DMT at all), and during this time I had my worst relapse yet. I then had to wait a further few months to be put on Lemtrada, which meant more disability progression.
Even though I met the criteria after the escalation approach, there was still a wait due to waiting lists and other reasons.
The reason I’ve given you my backstory is to highlight that early use of high-efficacy drugs could have really helped me here. Given that Gilenya and Lemtrada helped slow my disability progression so well, I often think, what if I had been on those drugs earlier? Maybe I would be healthier now. Despite what they say, hindsight is not a wonderful thing!
I am thankful to be living in a time where having MS there is also some hope. High-efficacy drugs are great, but I’m a firm believer in them being administered earlier. This is backed up in the study where patients in the escalation approach group, who are given less effective drugs, have a higher disability progression on the EDSS range, than the group who were given the highly effective drugs.
Studies like this are great in helping those of us afflicted by a medical condition, but the question of if or when it will be implemented probably doesn’t have an answer.
The study also mentions that safety of these drugs can also be a concern (as well as the cost), which I get, however, I think that it for the patient to be deciding with their doctor. I was well monitored, so if the same level of care can be given to all MS patients when they take a high-efficacy drug, then the drug is much less of a risk.
When I had to move on to Lemtrada, I was also offered HSCT (or nothing at all), but at the time I decided the risks seemed worse than Lemtrada for me, despite being well monitored. Lemtrada has its fair share of risks, but the potential/probable risk or worsening disability was worse, so the side-effects and risks were a gamble worth taking. This worked out well for me, aside from being diagnosed with an Underactive Thyroid a few years or so after my last dose, but I’m confident that I made the right decision.
I hope that one day the approach will be to offer MS patients high-efficacy drugs ASAP after diagnosis, monitor the patients well, and hopefully we’ll see less disability progression, so less damage. Aside from improving our lives, we’re less likely to need help – so for UK readers, less need for traumatising DWP assessments perhaps?!
I'm excited to join Shift.MS as a Buddy Volunteer. When I was diagnosed I found everything so overwhelming, and after years living with the condition, I'd love to help support someone who is newly diagnosed. I've lived in or around Brighton for most of my life, aside from a year in Portugal and a year in Perth, Australia. I found I managed to cope surprisingly well with the heat in both, (although one was pre-diagnosis), with the drier climates, siestas, and air-con...a must have! I don't think I could handle it now though as my heat tolerance has worsened. I love to binge Netflix (especially if it's a True Crime documentary), listen to music, write, and get out to see friends (on a rare good day)
I also enjoy going to gigs, comedy shows, and the cinema. I can play guitar, but I have problems with grip in my hands, which makes this difficult for me - maybe one day I will be able to manage this again. I studied for an Open University degree over 8 years, and graduated in 2021 with a BA (Hons) in Creative Writing and English Language. I currently live with my family, and we have a pet cat called Morgana.