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