I think I’m having a relapse – what are my choices?
This section will help you with making the right choices when you are having a relapse.
How many relapses can I expect?
Every person is so individual. If you’re diagnosed with relapsing remitting MS and not on treatment it would be unusual for you to stay relapse free over the coming years. If you have two or more relapses in two years, that would be an alert that the condition is becoming more active. You should feel confident to ask for assessment to start a disease modifying drug or change the one you are on to a stronger treatment.
If you’re already on first line disease modifying drugs and still having relapses, that may be your alert to talk to your care team and say: “I don’t think this drug is working for me, do I need to swap to another first line, or do I need to escalate to a second line treatment?”
Recovering from a Relapse
A relapse is caused by inflammation of the myelin covering the nerve fibres. Relapses cause inflammation but your body has the natural ability to remove inflammation, and is fantastic at recovering. But don’t be surprised if you do not get back to one hundred percent of your natural level of function before MS ever came into your life.
Steroids can help to remove the inflammation quicker than the body would do naturally, even though the outcome of that recovery has already been pre-programmed. It is worth weighing up the speed of that recovery versus the potential side effects of using steroids.
It may take 12 to 14 weeks if you leave your body to do it on its own, but if you take steroids you may speed up that recovery. But the degree of that recovery has already been pre-programmed.
What is this relapse stopping you doing?
If you feel like it’s starting to really impact on day-to-day function, for example: You’re struggling to look after your children, struggling to get to work or finding work really difficult. That is probably a signal that you should start to think about clinical attention.
Can I afford to allow natural recovery to occur? So that’s the question. And you might want to do something like, watch and wait versus steroids. And then maybe do some sort of pros and cons.
The very first time I was offered steroids for a relapse was not long after we moved to London and my nurse felt that as my symptoms were affecting my mobility and strength and I was about to start a new job that it would be a good idea to kick start my recovery.
Well, it’s to do with the impact, like how much is this relapse affecting me?
What are your choices?
If you’ve had a relapse before and you’ve had treatment, it would be useful to think what worked and what didn’t work for you as a person and ask yourself: “Can I afford to sit this relapse out or not?”
There are pros and cons of self-monitoring versus taking steroids. A pro of self-monitoring is that it’s natural and there are no trips to hospital, you can just do it yourself. The cons are about the delay of recovery. On steroids you get speed of recovery but there are side effects that come with them too.
People say: “Do you know what, I don’t like what steroids do to me, I don’t like the fact that they make me moody or they keep me awake all night.” So we would want to discuss that because you’d want to be, all the time, thinking: “Is this the safest option for you to do?”
Things were slowing down, I was tripping up and I asked my MS nurse for a prescription, and she gave me some steroids and within a couple of weeks I was back to normal.
I get a horrible taste in my mouth, I end up with insomnia, waking up in the middle of the night. I get sores inside of my mouth and blisters. So it’s all of those factors I have to apply and think: “Is it worth taking that to feel worse in the hope that maybe it’ll settle quicker?”