Treatments and personal choice
Hi all, I am new to this forum but a very kind lady at MS Society pointed me in this direction. I will preface this by saying I am 42, married mother of 2, work full time, busy life, and was diagnosed in Oct 2020 with RRMS after a period of Optic Neuritis effecting my vision. Very few symptoms outwardly over the 4 years but many lesions on my brain and spine on my first MRI and some new activity since.
My question, or room for discussion is around treatments, I refused treatment for the first year as it made little sense to me to put my body as increased risk of the side effects, however eventually relented and took Plegridy, I was on this a year but my usually sound mental heath took a dip among other things, I then did a watch and wait approach and the following year after a new lesion (no symptoms) was put on Tecfidera, managed this only a few months and the gastric issues made managing day to day life a challenge. I decided as the pressure was massive, after lots of research into the alternative medications I was offered, to go back on Plegridy as I had no relapse and no new activity and 'better the devil you know'. However, after blood tests last week we found it may be effecting my liver and my immune system is lower than ever, and I am just losing the will to live with the pay off of treatment at all. I absolutely know that the treatment is to prevent longer term issues and progression of the disease but I cannot seem to make sense of taking treatment which limits my liver function, immune system and effectively gives me flu for 6 days a fortnight, as even being worth it. I am also fully aware I am very lucky to have minimal symptoms at this stage despite the many lesions and I am not naïve enough to think this will always be the case. I feel if the neurologist and MS nurses were not as judgemental when I say I'd rather not do treatment for a while I would give myself some time and see if 'normal me' feels better without pumping this stuff into me on the off chance it helps at some point, but never knowing if it actually will. I just need to feel clear about my journey and wonder if anyone at all has deliberated in the same way and what helped them. I realise MS is such a personal journey but I hope that some of you may share yours. Any advice, words of wisdom, support, anything is much appreciated. Laura :)
I think what you’re describing is very common and a lot of people suffer with side effects because unfortunately all meds targeting MS and your immune system will have side effects. Sounds like you know the evolving natural history of MS is something to avoid if at all possible. Only you can know - if you do unfortunately progress and end up in a place you don’t want to be, will you look back and wish you’d tolerated the side-effects or be happy with your decision to go without meds? The only other thing I’d say is you’re on the lowest efficacy medication available (along with copaxone). If I were going to have to suffer side effects from a medication, I’d at least want it to be from one that was likely to help me.
@mellowmedusa So very grateful for your reply. You are absolutely correct, Plegridy is low efficacy because they do not feel my MS is bad enough to warrant higher efficacy treatments yet, despite the lesions showing up like Christmas lights I am guessing the lack of outward symptoms have some bearing on their decision possibly. I take on board your comment about how I would feel if I end up with bad effects of MS having not treated it sooner and I do consider this, but also consider the fact that I could end up in that place despite treatment and also be constantly unwell in the meantime with infections, a poorly liver and possible poor mental health. I personally would prefer a watch and wait approach for a while and see if going in at a higher efficacy treatment in future as the disease no doubt evolves, makes it feel like a more beneficial option but even as I type that statement I question myself. Its a minefield honestly! Again very very grateful for you taking time to respond.