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Moving from Rebif to MS Pill

My partner has been on rebif injections (3 x weekly) for 10 years and is thinking of moving onto the MS pill (she is diagnosed R/R).

Has anyone been on rebif for a number of years and moved onto the MS pill? If so any experiences - good or bad?

Thank you :slight_smile:

I was on Rebif for about 4 years until I had two disabling relapses within 3 months. My neuro and I discussed options and I decided to opt for Gilenya (fingolimod). I’ve been on it 2 years now with no relapses and no side effects. You have to have the first dose in hospital as you have to be monitored for at least 6 hours but that was just a long, boring day.

Do you know which tablet your partner is considering? Good luck to her, I didn’t mind self injecting but I certainly don’t miss it :slight_smile:

Tracey x

I was on Rebif for approx 10 years also. I did pretty well on it for this time but then i started to feel unwell and my ms symptoms were getting worse. My neurologist decided rebif was not working for me any more.

I was reluctant to change medication at first because my ms had been pretty stable up to this point but i really felt so unwell that i had nothing to lose.

I started Tecfidera 14 months ago. I am doing much better now. I was nervous about trying something new but this new drug is turning my life around for the better.

It’s been a slow improvement over the 14 months but i am now making progress each day. I am really pleased i decided to change.

Which drug is your partner moving onto? I feel drugs are moving forward in the treatment of ms and i feel we should be open to try new things.

I never expected to see an improvement in my ms.

There are side effects of Tecfidera but they have not caused me many problems. I flush still but it doesn’t bother me. I have not had any stomach problems. I eat a normal diet.

For me the pro’s of this drug far,far outweigh the cons.

Teresa.

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it is reassuring for me (a tecfidera user) to hear good news stories such as your’s Treek.

too often the www is a soap box to groan and moan, but there are some topics of conversation that can inspire optimism.

for me, i already consider myself to be very lucky; i might have been diagnosed as having MS, but right now, the symptoms are slight and manageable. combined with this, is that i have a very proactively minded neurologist who was more than happy (without pressuring me) to get me on a DMD of my choice.

due to the mild nature of my disease and my relatively few number of relapses, i have no real control by which to determine whether the drug holds any benefit for me. i merely take it out of good habit; an indulgence of the statistics that suggest it to be one of the best drugs out there; an assumed investment on a future unimpeded by an incurable lurgy.

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Hi Paolo!

I am definitely seeing improvements now. It has not happened overnight though.

14 months ago i was housebound. I had a lot of pain in my face/neck/jaw area - i decided not to take neuropathic pain relief for this (my choice!). It can only be the Tecfidera that is lowering my pain as i don’t take any other medication at all.

I am starting to be able to smell things again (very poor sense of smell and taste for several years previously). Taste is slightly improved.

My fatigue has improved and i am now getting out of the house again. My feet were a bit numb and now i can feel them much better.

Even though i am still experiencing the flushing - every time i flush i think the Tecfidera is reducing my inflamation/lesion . The more i flush - the better - because i feel this drug is working.

14 months ago i would have never believed that i would see improvements - i believed Tecfidera would hopefully just stabilise my ms (if i was lucky)

My neuro believes i have a pretty bad lesion or inflamation that has been been causing my symptoms. I believe this inflamation/lesion is reducing. I think i have a little way to go yet but if i can continue to improve like this - i will be the happiest person alive!!

I’m so glad i moved onto this drug - of course,it might not be the same for everyone but its worth a try.

Don’t expect to see an overnight improvement though - it’s been a tough time but i believe if i had not changed medication i would have continued to get worse.

p.s the rebif kept my ms stable for those 10 yrs so i don’t regret taking it - but for me - it was the right time to move on as it just stopped working.

Teresa.

Treek… is your neuro in the habit of scheduling annual MRIs?

Mine does. I do not really care too much for the results (unless a red flag is provoked,) but the medical bods over here like to have pretty pictures in order to definitively measure any improvements attributable to a certain drugs, dietary / lifestyle change over time.

Medicine is science and science is peer reviewed. I imagine the kudos given to the neurologist who is at the forefront of a process that could reduce an active MS into a benign one, would sustain an ego for quite some time! :slight_smile:

I hope things continue to go from good to better for you! For us all!!

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The answer to your question Paolo is no!

In 10 years i have only had one MRI and that was part of the diagnosis process.

Too expensive apparently! I would have liked one before starting Tecfidera and then one at a later date.

I have had to fight to get my drug changed - it wasn’t easy! My neuro is a (choose expletive of your choice) :slight_smile:

He is very set in his ways - and doesn’t listen to his patients.

The turning point for me was when he was unavailable for my appointment so i saw a new neuro and she agreed to change me onto Tecfidera. I have insisted on staying with the new neuro and have refused to be treated by the old one.

Teresa