Last reply 1 week ago
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.

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caseyxo
2 weeks ago

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


nutshell88
2 weeks ago

Hello,
no you are not the only one
I stopped treatments 2011 dr in uk indicted i take gilenya 2013!i agreed they prepared mri but i panicked and didnt go
2014 i was the first patient to tske tecfidera i was staying in Edinburgh
but couldn’t tolerate the treatment then stopped it
i stop treatment without telling neurologists usually
you’re so polite x


lori123
2 weeks ago

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!!!


keepsmyelin99
2 weeks ago

Hi @caseyxo 👋🏻
Glad to see I’m not alone but sorry to hear you’re finding it hard to decide too! When you see your nurse, please raise any concerns you have. I didn’t have any concerns when I last saw the nurse and so I can imagine I sounded pretty stupid on the phone saying “but what about the risks?” and then started listing stuff I’d never mentioned to her before 😂 I hope you can find something that works well for you. Thanks for commenting 😊 x


keepsmyelin99
2 weeks ago

Hi @nutshell88 👋🏻
It’s reassuring to read that you’ve had some stopping and starting too 😅
When you were in Edinburgh, did you go to the Anne Rowling Centre? I go there now!
Haha 😂 I wish I was as bold to just stop and not tell anyone but I thought I’d better keep them informed to avoid getting disappointed looks at my next appointment.
Thanks for letting me know about your experiences x


keepsmyelin99
2 weeks ago

Hi @lori123 👋🏻
Thanks for commenting your experience and recommendation. I wanted to post my situation here to avoid being closed minded because I know I can let my stubborn nature get in the way of decisions and that I might regret that later. Thanks for what you’ve said – I’ll consider it over the next few months 😊
I’m glad you’re liking Ocrevus, I hope it continues well for you! X


nutshell88
2 weeks ago

@ keepsmyelin99
western general at first some handsome neurologist lol cant recall his name
he referred me to dr willler Anne Rowling yearly visit./Royal infirmary too.
little france eh? 😜 but I used to stay at quarter mile looking at the meadows from my window 😇 it was far from the hospital my job and also my college


keepsmyelin99
2 weeks ago

Nice! @nutshell88 I’ve been along to Anne Rowling 2 or 3 times since I was diagnosed but I’m actually going to have my appointments at a hospital closer to me. I like Little France but other takes me a few hours to get there so I always have to leave at 6am to be there on time!


nutshell88
2 weeks ago

@ college aye righ’
it wasni close to me either x


lori123
1 week ago

@keepsmyelin99
Thank you so much for responding. I hope things get better for you! Have a great day!!


stumbler
1 week ago

@keepsmyelin99 , you were right to make the decision to reconsider. We can get caught up with the tide of this condition and just agree to whatever. After all, it is your body.

Your planned strategy seems reasonable. Only time will tell whether it’s the right strategy.

Copaxone does seem to be the right choice for you, which is compatible with your family aspiration.

Just keep your spirits up and your stress levels down.


keepsmyelin99
1 week ago

Thanks @lori123 ! You too ☺️

Thank you @stumbler ☺️ felt so much less stressed recently and it’s been really easy to keep my spirits up with Christmas just around the corner 😂 hope you’re doing well and thank you for your opinion, I appreciate it!

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