DMT stands for Disease Modifying Therapy or Treatment. Sometimes also referred to as DMD – Disease Modifying Drug. These get offered to MS patients upon diagnosis. The best bit (note the sarcasm) is that your neurologist tells you about them briefly, points you in the direction of the MS Trust’s website where you’ll find tools to compare the available treatments, and tells you to “choose” one. Thats it. Currently there are around 20 different ones, ranging from oral tablets to injectables to infusions. No guidance is given on which might be more suitable based on your current medical situation or history, you’re literally on your own (a theme, in my experience, that continues for MS patients). Now DMT’s are designed to suppress the immune system in the hope that it doesn’t attack our nervous system and cause more damage. Nothing is guaranteed, they “can” reduce the number of attacks. That never sat well with me, these drugs are serious and ALL of them have side effects and can damage you elsewhere…

So I chose a daily injectable called Copaxone, mainly because I am absolutely useless at taking pills (or was, I take that many now I have pill sorters for each day and timed reminders on my phone 🙄) I was on the contraceptive pill for about 15 years and how I don’t have 7 or 8 kids is beyond me! I’d semi-regularly open the pack to find I’d not taken one for 2-3 days, take all the missed ones and that current day only to repeat the process in a couple of days time 🤷🏻‍♀️ useless! So I figured remembering to inject would be more pronounced in my mind. And I was right, I never missed one and all went well for around 18 months, although the “auto-injector” they send with it is fucking savage so I dropped that pretty quick and just injected manually. It’s a subcutaneous injection and I had plenty of squishy bits to inject into only one day I accidentally hit a vein. That was some scary shit; hot, feint, lightheaded, heart racing, I honestly thought I’d pass out. So I basically scared myself out of continuing on it.

I switched to an oral drug called Tecfidera. Side effects were fairly manageable and consisted, for me, mainly of flushing. Like I was having a hot flash all red in the face, neck and chest, easily sorted with an anti-histamine. Unfortunately it drove my lymphocytes too low. Those are small white blood cells which help to protect the body. This is bad as they keep certain, dormant infections in the body under control, most importantly the John Cunningham Virus ( JCV), a type of human polyomavirus which affects more than 50% of all human beings but is completely harmless when you have a normal functioning immune system. Something that we don’t have when taking DMT’s and when you are JCV+ and your lymphocytes drop too low the virus can become active which leads to a condition called Progressive Multifocal Leukoencephalopathy (PML) which will kill you, no fucking about. So they took me off it.

I actually felt better in myself not taking anything and stayed relapse free, so I stayed DMT free for a few years. Unfortunately the sudden death of my first dog sent me into a flare up (sort of a pseudo-relapse where old symptoms flare up due to stress) and I panicked. A decision I regret to this day followed.

I spoke to my neuro and he agreed I should restart DMT treatment so I chose Ocrevus. A drug that is administered by infusion in hospital every 6 months. Very convenient as one day twice a year I got to sit and do nothing for the day while they pump a bag of medication into my veins and the other 363 days I could go about my normal life. Only after the first treatment things started to change for me and it pushed me from RRMS (relapsing-remitting MS) to SPMS (secondary progressive) which means my body no longer has relapses and then recovers. I just progressively become more and more disabled. Fan-fucking-tastic.

Obviously big-pharma will hear nothing of it, there is a group on Facebook called “Did OCREVUS fail you?” which has over 4000 members, all of whom have been adversely affected by Ocrevus, but unless you are hundreds of thousands, at least, you stand no chance against a $47billion company, even less likely now they’ve been bought out by Roche, a company worth almost $200billion. So we all have to accept “it is what it is” and damn well get on with it. And we do.