When Ema was diagnosed, injectable MS drugs seemed to be keeping symptoms under control. But a severe relapse made her consider more powerful treatments
When I was first diagnosed, not at all comprehending the seriousness of what I was being told, my reaction was quite blasé. Nonchalant. Insouciant. Unlike the approach of so many people more recently diagnosed, I didn’t immediately get online and start researching my options. Well, I bought some flaxseeds and vowed to stop drinking.
Once my first notable relapse was all but over, my first MS nurse (I’ve moved region a few times since it all started), handed me a booklet that outlined the key things you’d need (want?) to know about the injectable DMDs: Avonex, Rebif, Betaferon and Copaxone, and told me to go off and make a choice. The criteria I elected to use for this most important of decisions was: a) how many times do you have to inject every week and b) how long’s the needle? I like to think efficacy and possible side effects were also a consideration but, hey, I was 27! I did not have time for this.
Injections for Rebif are thrice weekly, sometime followed by pretty nasty ‘flu-like symptoms’, although I was lucky to never suffer these. I was on this for about a year, feeling fine and diligently filling in my Rebif branded injection diary, when a regular blood test revealed I had a low white blood cell count. No worries (I was still pretty casual about the whole chronic illness game), Copaxone it shall be then!
The reason that I didn’t go for this the first time around is because you have to inject every day. Yes, you heard me correctly: every single day. My second MS nurse (I lived somewhere different now) went through site rotation and why that’s so important with me, and then I was off – with a new (this time Copaxone) branded injection diary that I would, again, be filling in diligently. I really didn’t like the daily routine of this particular drug. I found injecting into my arm (the fleshy part near the top) impossible – eventually my husband did it for me – and also really painful. But, the most important thing is, I didn’t have a single relapse whilst on these DMDs.
A devastating relapse
In 2011, I got married. My husband and I decided we might want to start a family and, on my nurse’s advice, I stopped the Copaxone. Two things:
1. we (I) hadn’t really thought seriously enough about the prospect of children, I just really didn’t like the injections and not doing them anymore was great;
2. I wish I hadn’t stopped.
2012. Moved again. No sign of MS – well, apart from an odd sensation, like sand under my skin in my hands. I go to meet my new MS nurse; I tell her how ridiculous I feel saying I have the disease when I’ve been completely fine for five years; I tell her that I think it’s benign; I tell her I’m thinking about coming off medication for good.
Famous last words?
2013. The year of the “devastating” relapse (words of my MS nurse). As this relapse (and I think it was actually three spaced out, the third being the devastating one), slowly began to retreat, the issue of medication was back on the table. My neuro, nurse and family were convinced that Tysabri was the one. I was unsure. I’d heard about PML (or, rather charmingly, progressive multifocal leukoencephalopathy) and I didn’t want to take the risk – still, despite everything, remaining blinkered to the very real long-term risk of further relapses. But I took the JCV test, just to see; obviously I was positive. After thinking, and then thinking some more, veering between yes and no, reading, and rereading any information I could find, I went for it. After the first infusion, I panicked constantly, seeing everything as a possible sign of PML. After the second, I was (maybe) a little calmer. Now, after the eighteenth, I barely think about it at all. Although my absolute and final red line was always drawn under the twenty-fourth. I’m now considering my ongoing treatment options.
If I were diagnosed now? I’d go straight for the hard stuff. Kick MS down before it has the chance to even stand up.
This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.