Last reply 2 weeks ago
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 🙂

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cookie91
2 weeks ago

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
2 weeks ago

@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.


cookie91
2 weeks ago

@stumbler , you’re absolutely right. Try not to second guess the appointment. If there are two things I know it’s that we can’t second guess anything with MS and everybody’s situation is different!

Good luck with your appointment 😊


rogersouthall
2 weeks ago

Becca2807 whatever the reason it is nothing to stress about, I was on Tecfidera for sometime and it was not right for me, everyone reacts differently, all will be well.
Hope things are going well, take a read of this months blog http://www.wholesorts.com i write monthly and it shows those with MS the things that I deal with and for those none sufferers it gives an idea of what MS is all about.
We are a decent bunch on here, a mix, so please feel free to chat anytime


vanessa
2 weeks ago

Hi!
I’m going throiugh something similar! I’ve been on Copaxone for 8 years with no relapses, symptoms flare when I’m tired but overall I feel normal! I gave birth to a baby December 2017, my scan showed improvement in pregnancy however my scan I had this January showed I had one new lesion and neuro wants to change me to Gilenya. However I have said we are trying for another baby so he said I can stay on copaxone for now. However in my eyes no drug is a cure and if I feel well do I risk changing when I have a toddler to look after? It’s so tough! I’d say if you are planning to have a baby copaxone you can conceive on…


becca2807
2 weeks ago

@stumbler and @cookie91 Thanks for the advice! You were right to not try second guess the contact from the MS team. I do get so frustrated sometimes with how they approach conversations and contact people with MS (who are more often than not, extremely anxious individuals like me!) The phone call I had this week was very much “This has been suggested for you” (but with little explanation) rather than “We’ve been looking at your notes and have found another treatment that may work better for you. Would you like to come in and discuss it further”.

I have lots of information on gilenya now so will spend the next couple of weeks weighing up my options. It does sound like the drug will fit in better with my lifestyle. I just want to make sure I have plenty of time to transition onto it as I am away for 3 weeks in October. It sounds like the screening checks for gilenya are quite intense so will require more hospital and GP visits than I’m used to on tecfidera.


becca2807
2 weeks ago

Thanks for the family planning advice @vanessa. I think we are another year off on trying for a baby so I’m now weighing up my options and think it might be worth changing to gilenya in the meantime. I am not looking forward to lots of the tough decisions you’ve had to face in regards to your pregnancies and trying for a baby. Sounds like you are doing a great job with your family and considering all options carefully.


becca2807
2 weeks ago

@rogersouthall thanks for your advice and the blog suggestion.

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