amy_johnson 13/03/17
Last reply 1 year ago
Tecfidera no longer seems to be working!

Hi guys,

I hope you are all doing well. I’ve got a quick question and am hoping you can help me.

I was diagnosed with RRMS at the beginning of last year, and I have been on Tecfidera since June. It seemed to be working really well for me and once I got over the first few side affects, I was ok with it. But in December I had a relapse, the first one since the end of May. My MS Nurse believed this was brought on by an infection I had. Once my infection cleared up and my body started recovering from my relapse, I started to feel ok again. But last week I began getting new symptoms, and old ones returned. I thought this was because I had pushed myself with moving house and thought if I rested for a couple of days, these symptoms would disappear, but they haven’t. They have got worse. I spoke to my MS Nurse today and I’ve got an appointment with the relapse clinic on Wednesday, and she advised me that we will most likely have to discuss other treatment options, as she thinks Tecfidera is no longer effective.

So, my question is, what treatment would you recommend? Has anybody had a similar experience with Tecfidera and moved to a different treatment? If so, which have you decided to go with?

Thank you in advance for any advice you can give me!!!
🙂

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potter
1 year ago

I have been on it for 3 years and haven’t had any relapse, DMT’s can work better on one person and worse on the next. I am sorry you are going to have to break in a new medication. Potter


mrratcatcher
1 year ago

Tysabri seems to suit some people.


krys
1 year ago

Hi,
I was on Tecfidera for approx a year then I had two relapses very close together. I had an MRI which showed new lesions. They stopped the Tecfidera and I received Lemtrada last July. So far so good , no further relapses.
Maybe you need an MRI to check on activity and this will help you decide which is the way forward regarding treatment. Read and research as much as you can about treatments so you are able to make an informed choice.
When I spoke to the consultant about having Lemtrada I felt it was like a job interview. 😃
Hope it all gets sorted for you quickly
Krys


kattyazz
1 year ago

I was on it for a year, no previous experience to compare it with… turns out I had stupidly dismissed relapses as minor flare ups ups erroneously… anyway genuinely thought I was doing ok (was chuffed to be on tec) but I had a few new lesions and doctor shocked me by saying we need to step it up when he saw my MRI results – gonna be starting lemtrada at some point soon… guess this had taught me listen to your gut… I swear I knew one of my relapses was a relapse but I was shy to ask my GP or ms nurse for fear of being labelled a drama queen/hypochondriac- anyway hindsight is great. Hope you’ll get it sorted v quickly xx


christine-lever
1 year ago

I was on Tecfidera for two years with no side effects. I had a relapse last Year and so my neurologist ordered an MRI. He phoned me to tell me the relapse was due to new lesions. Great! He told me to stop the Tecfidera and organised for me to start Tysabri at my local hospital. This took a while but I finally went for my first Tysabri infusion on March 1st.
I was upset that I had finally found a medication on which I had no side effects and hated having to go off the Tecfidera. I had previously tried Betaferon injections and also Gilenya both of which made me sick with constant infections.
I hope all goes well for you and that your next medication works for you if you need to change you DMT.
Christine


californiadreamin
1 year ago

Minor comment on this part “Tecfidera is no longer effective”. I would only caution that there is still every reason to believe its helping, but just might not be sufficient any more. Sorry to hear about your relapses, hopefully you will get something to get them under control.

Do you know if you are JCV positive or negative? I think that would impact my decision on which medication would be best.

In addition to DMTs have you considered diet, exercise and mindfulness etc? Our family is following OMS pretty aggressively and consume things like flaxseed oil daily. It given us a lot of hope and seems to be very complimentary to medication.


amy_johnson
1 year ago

Thank you all so much for your help. Had my appointment at the relapse clinic today and they have started me on a 5 day course of steriods. Seeing my neurologist next Wednesday so I will read up and do my research so I’m ready to discuss every thing with him. Thank you again for your comments, I really really appreciate it!!!!

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