oskar 14/03/18
Last reply 1 month ago
Opinion

I’m seeking opinion rather than advice.
2007: I had a small relapse.
2008: I had a small relapse.
2009: I had a humdinger and started monthly Daclizumab and have had no relapse since.
A month or so ago, I was switched to Tecfidera, twice daily (Daclizumab is no longer avaiable).
The top and bottom is that since I switched from monthly subcutaneous to twice daily tablet, I’m a tad fed up and I have started to feel that MS is encroaching on my, albeit limited, lifestyle.
What do I have to lose by giving up meds do you reckon?

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stumbler
1 month ago

@oskar , well, you don’t really want to have another humdinger, do you?

If the Tecfidera is not agreeing with you, then Cladribine may be another option. Or even Ocrevus. If they’re not available then you could consider Lemtrada or Tysabri.

There are options available.


grandma
1 month ago

Oskar please don’t do anything in a hurry. We are all do different, as is our ms. What suits one might not suit another, and have you considered that your ms might have been encroaching anyway and it’s just a coincidence? Don’t do anything in a hurry and dmd’s need to be given a chance to work!😍


arbee
1 month ago

I started Tecfidera in Mid-November and it wasn’t until about late January that I started to feel human again, now in Mid-March I feel the best I have in years!

Everyone is different and maybe it isn’t for you but from my experience I would say stick it out for at least 8 weeks before throwing in the towel


potter
1 month ago

I have been on Tecfidera going on 6 years, I had my first mild relapse right before Christmas. It also took me three of four months when I started Tec before I felt on top of the world. I really did feel that way, I had been on Rebif for five years and always felt weak and tired the day after my shot. Give it a little more time. Potter


edgarleroy
1 month ago

Tecfidera sounds like it’s hard to tolerate, and twice daily, too. Cladribine is easy to tolerate – personal experience. Safer and more effective also. Much more convenient, only a few doses needed. Tolerability is a good reason to switch drugs. You will do worse with no DMT, so don’t do that.


oskar
1 month ago

Thanks everyone for your attention and comments, I now have plenty to raise at my next MS appointment, 22nd May. In the meantime I will persevere with Tecfidera.
Thanks again.


californiadreamin
1 month ago

@oskar Tecfidera gets almost magically better for most people at around 8 weeks or so if you can make it that far. Given your next appointment date, I would seriously see if you can continue with the medication till then. My wife had a horrible set of weeks in the beginning but now she doenst even notice if she took it.


andmasta
1 month ago

Have you ever looked into alternative courses of treatment such as controlling the condition with diet, relaxation, and health supplements? I was diagnosed with relapsing/remitting 12 years ago and avoided/refused any medications. It wasn’t easy at first, but once I found the balance that worked for me, my life improved greatly. The only thing I was advised to take, by a holistic practitioner, was 9000mg of spirulina a day. I then started adding other things to help bolster my immune system. Some of it was trial and error, but once I had settled on the right mix things improved. I haven’t had anything that is call a relapse in maybe a year. I still occasionally get some fatigue, but that’s always work related. There are various ways to avoid meds, you just need to find what works for you.


kase
1 month ago

The same as andmasta, I also don’t take medication. I was diagnosed in 2014 with RRMS. I am still completing my family so was advised not to start medication until I have finished. I was having daily symptoms of tingling, fatigue and sometimes dizziness and I lost vision in my left eye for around 3 months. Following this I decided to take my MS into my own hands. I have been following a low fat vegan diet (after reading ‘Overcoming MS’, exercise regularly and practise relaxation for around 5 months now. No symptoms at all!!! It’s life changing. Everyone is different though.


stephz
1 month ago

@oskar I can only reiterate that DMTs are impotant & the latest brain health report recommends starting one asap & staying on it https://www.msbrainhealth.org/report as it really affects disability later on

My neuro said that I should pick a DMT that suits my lifestyle & it sounds like Tecfidera isn’t quite working for you. I started it in January and the 2 tablets a day every day can be a pain – especially for spontaneous dinners…know you can change the DMT if you want maybe the MS Trust DMT decision maker is a good palce to have a look what suits your lifestyle – disvuss your worries etc with your MS team

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