@becca2807 

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becca2807

Changing from tecfidera to fingolimod

I've just had a call from my MS nurse about my medication. I have been taking Tecfidera since my diagnosis in 2015. I've not really had any relapses other than a few mild issues which I think was mainly aggravated by work stress (tingles in hands and a period of 3 weeks where I had an MS hug on and off). I get the usual fatigue and cognitive brain fog but usually put this down to stress, tiredness and when I haven't been listening to my body! I had an MRI scan in March (still not officially received the results from this!) Today I had a phone call from my MS nurse to come into clinic as they would like to talk to me about changing my medication from tecfidera to fingolimod. She said she would go through my MRI when I came into clinic. I'm pretty shocked and overwhelmed as I thought I was coping well on tecfidera and managing my MS. All I can thing is that my MRI scan must be showing something quite the opposite! Anyone else experienced something similar? I know it's important to listen to the advice of doctors and nurses but feel well in myself and with the medication I'm currently taking so not too sure what to do! I also hoped to start trying for a baby in the next year or so and new I would need to change my medication then. Not sure if I should be swapping and changing quite so much! Any advice or experiences would be great! Becca :)
@Cookie91

Hey! I’ve had a similar experience. I was taking Gilenya (Fingolimod) for a good few years and decided to come off it to try for a baby. I was really stable for the years I was on it. No real relapses just a few recurring symptoms like an ache I get in my right hand when I’m hot or stressed. I had an MRI a couple of weeks ago which showed a huge increase in the number of lesions, hinting that the Gilenya probably wasn’t working and was just masking the symptoms! I am now being put forward on to Cladribine so family planning will be delayed for a couple of years. Fingers crossed this slows down any further progression!

@Stumbler

@becca2807 , don't try and second guess this upcoming consultation. There are a few reasons why a change of Disease Modifying Therapy (DMT) would be proposed, so it's best to wait and see. Do let them know early in the consultation that you have aspirations of motherhood, as this will influence any DMT choice.