Hello 👋🏻 so it’s been a tough few days…
I was due to start taking Tecfidera on Wednesday but as soon as I held the pills in my hand I had a marvellous panic – is this really what I want to do? Am I ready for this? Have I thought about this properly?
After much thought and discussion with family and friends, I spoke to my MS nurse to let her know where my head had jumped to. Now that we’ve spoken, I’ve decided I’m going to take a bit of time to address my concerns and refine my decision. I have an appointment with my neurologist at the end of January and I’ll be discussing treatment with him then.
This is my current stance:
I’ve had 1 RRMS attack. I recovered 99% with steroids. I’m 20 years old. I have genetic predisposition to a few diseases. I want to have children one day. I think I know what triggered MS in me.
Therefore, I’m now planning on going without a DMT and monitoring things routinely. I don’t fancy many of the very common side effects from any DMT but more importantly, I don’t want to take a DMT that could send other aspects of my health into deterioration in the long term.
If/when disease activity and/or symptoms start to concern me, I will possibly try Copaxone. If this works well and I am happy and comfortable with my quality of life then I will continue to take Copaxone until either (a) I have had NEDA for 3 years or (b) it stops being effective.
If I have had NEDA for 3 years on Copaxone, I would stop taking a DMT. If there was ever any cause for concern then I could restart Copaxone.
If Copaxone stops being effective in the future, I may be willing to try either Lemtrada or Ocrevus if I feel comfortable with it.
At the moment, I think this is the most sensible plan that considers my concerns and aspirations.
I was wondering if anyone else has had a complete crisis in confidence whilst starting a DMT like I just had? Or if they have devised a treatment “plan” like this? It’d be great to know other people’s perspectives, opinion and advice.
Thanks for reading folks!
Finding it easier to keep smiling now that I’ve got a bit of time to rethink things.
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