Last reply 2 months ago
Tecfidera

I need some advice..
I have been on this drug for the last 3 years..I have hated it every step of the way..the flushing never really got better for me, it’s just unpredictable. I continue to tell my nurses that I no longer want to be taking it, they then push it on me again giving me more tips to try, so I do..and it’s no different.
The lifestyle I have doesnt allow me to sit down for big meals before taking it – I NEED my coffee in the morning to be alive basically. I work two jobs…which are either one on on with patients or in front of a classroom of students & as you can imagine having the flushing in those times is less than nice.

I have my check up in June and I am once again going to tell them that I am done with this.
To be honest I have stopped taking the fill dose for the last little while because I just cant take it anymore.

Does anyone experience the same or have any advice for me when going in to speak with them? It’s like they wont take no for an answer.

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stumbler
2 months ago

@newfiegirl11 , how have your MRIs been since you’ve been on Tecfidera? If there’s been no visible progress, then this won’t help your case.

But, having said that, it’s your body and your life, so your views are important. Additionally, the stress that this situation is causing you is not conducive to efficient management of your MS.

There are a range of alternative Disease Modifying Therapies (DMTs) now available, so do your research upfront so you’re aware of what you find acceptable. These links should be useful :-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf
https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

These are UK-based websites, but the information cuts across borders.


newfiegirl11
2 months ago

I havent had any new lesions since being on the Tec..but at the same time I havent been taking it as prescribed for a while now, because I havent been able to manage it..so is it even really the cause of this? Know what I mean?

The only other thing I have changed since my last relapse is smoking cannabis (1 draw) after work, and more on the weekends to help with my stress relief & headaches.

Who’s to say what had actually been helping.


rogersouthall
2 months ago

I was on Tecfidera and perhaps had an adverse reaction, low white blood count making me prone to infections then contracted the JC brain virus,after 7-8 months they reviewed it and suggested another drug, my response was a negative, why so long to keep me on the first, their response was I may of got better, amazing, so I took the decision to have a break and see what happens, I now take CBD oil and vape the odd cannabis when I can and yes, I suppose I will re visit the situation but when you read the plus side of a drud the negatives seem to risky, we will see.
I write a monthly blog, on there are my contact details, feel free to call
http://www.wholesorts.com


potter
2 months ago

I was on Tecfidera for 6 years I would go through periods that I felt overwhelmed with it. I would have no energy and just feel bad in general. Like a puppet with no puppet master to pull my strings. I decided to take one a day for a couple of weeks until I felt like I could handle it again. It only took a week and I felt like myself again. My neuro wasn’t happy about it but he said I could do that when I felt over medicated if it kept me on it. I only did it a few times but it did improve my out look on staying on Tecfidera. I am not suggesting that you try this, Tecfidera is not a good drug for some people. Potter

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