Has anyone done the same as me?
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.
Hi, Your post caught my attention, as all of that has crossed my mind too. I have to see my MS nurse to tell her what DMT I want to start, and the answer is none of them really, but I was/ am leaning towards tecfidera. It’s not an easy decision, and one I am also back and forth on... I have had 4 months to decide and still not sure. I think your approach is valid, and at any point you can always change your mind. Casey x
Hello I am 48 years old and diagnosed with RR in 2017. I was told I had MS for at least 15 years or more. I wish I would have known only to save my legs. I now have progressive. I have been on Ocrevus for 2 years and really like it. The side effects are manageable. I really hope that things get better for you. I really in courage treatment!!!