How benign is benign? Would you ever decide to stop treatment?
I haven’t posted here before, although I’ve sometimes browsed. But now I’m pondering a big question about possibly benign MS: How benign is benign enough to consider stopping treatment – when that treatment has a significant negative impact on your quality of life? I won’t be making any snap decisions, but I’d be very grateful for people’s views to help me think!
Here is the long story: (Apologies, it’s rather long!)
I was diagnosed in 2001 when I was 28. I had three relapses within a year, including optic neuritis, loss of sensation, and some quite bizarre movement difficulties in my right arm and leg. I was living in Germany at the time, where the diagnosis and treatment processes were very efficient, and I was put on Copaxone straight away. (At the time it was difficult to get it in the UK.) They were not terribly upbeat about the prognosis, possibly because of the movement problems, and I was advised to change my career as a classical musician, which I did.
I continued on Copaxone for about 5 years, until I wanted to get pregnant. In that time I had one sensory relapse, but nothing major. I then spent nearly 5 years either pregnant or breastfeeding. All that time I felt absolutely great, as far as MS went. (I think it is established that pregnancy can be positive, and I have since read that extended breastfeeding may actually have an ongoing beneficial effect.) As soon as my second daughter stopped feeding, seven years ago, I had a relapse and asked to go back on treatment. They wouldn’t give me Copaxone again, as I had quite a lot of atrophy from injecting, but put me on Avonex instead.
Avonex has been a trial! After 7 years, I still have quite severe side-effects and I give up the best part of a day every week to sleeping it off. However I’ve counted my blessings as otherwise I’ve been very well. I have only had two relatively minor sensory relapses in the last seven years, and MS only affects me in a minimal way. I have some minor sensory disturbance and loss of strength in my right side – I don’t like to try and do things like open jars (or play the viola). I had an MRI last year, which was free of any new activity. I feel unbelievably lucky to be honest, knowing how MS can affect people.
At my annual review recently, I asked the big question. Could there come any point when they could say that my MS had turned out benign enough to justify stopping treatment? The weekly Avonex days mean that I’m currently losing significant quality of life to the gamble against the future. I guess the point of any treatment is to maximise quality of life. And although my family can step in and help out, I’m still missing out on chunks of my kids’ childhood.
The neuro was slightly surprised, but he said the answer is that they literally don’t know. In light of the fact that I’ve been so lucky so far, the question is a reasonable one. He said that there’s no hard evidence one way or the other to support a decision – I think it will be pretty much down to gut feeling. However he also said that if I stopped treatment, the guidelines may not allow me to change my mind if I were to go on to have a minor sensory relapse – only a fairly disabling one.
So basically, either I have been very lucky to have been treated from the beginning and to have responded to treatment, in which case it may not be a good idea to stop. Or I may have been destined to have a benign disease course anyway, in which case it may not make much difference. Or a mixture to the two. I’m now 45 and have got so far – the future looked rather different at 27.
Incidentally, I think have discounted switching to one of the newer immunosuppressant therapies. I know quite a lot about them now and they make me very nervous, particularly with looking after kids.
I appreciate how lucky I am to have this dilemma at all of course. But it’s still a real dilemma, and it would be very interesting to hear from anyone with any thoughts or similar experience. Thank you for reading – if you made it to the end!!
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