Good afternoon all!
I was diagnosed with RRMS back in August 2007 and have been on numerous DMDs over the years with the latest one being Brabio (glatiramer acetate).
After a recent appointment with my MS consultant he has suggested / advised for me to move away from Brabio to something a little stronger to manage my MS a bit better and has suggested either Tecfidera (dimethyl fumarate) or Kesimpta (ofatumumab).
I have done a little bit of investigations to these but, with all medications, there are pro’s and cons to them all so I was just wondering if there was anyone out there in a similar situation to me or if there is anyone on either of the 2 suggested DMDs? If so, how do you find them? What side effects do you get? How “convenient” do you find administering these around your everyday life?
Any advice anyone can give me on this would be appreciated so I hope to hear from someone soon to help me decide.
Hi there, I’ve been on Tec for 3 years., started shortly after my RRMS diagnosis. Had some flushing in the first couple of weeks after starting but beyond that no other symptoms. I take them twice a day with food or sometimes in the morning a thick fruit smoothy for convenience.
Bloods taken every 3 months to check my lympho count, which have been fine. I’ve had no relapses in over 3 years, and MRI’s have been all clear too. I think they’re a great medication and would highly recommend them from my experience. I’m sure there will be other opinions along shortly. Might be a good idea to search the threads, this topic comes up often.
Kesimpta is a new MS med so I definitely wouldn’t rule that out either, though I personally dont know much about it. Good luck.
I’ve been on Tec for just over a year. Had lots of hot flushes and some stomach pain too at the start but that eased off around 3 months in and since have had mild flushing most, but not all, days and it’s just once a day for about half hour or so. So all in all quite manageable. The pills themselves are convenient compared to most ms meds I’ve heard about. The only thing I sometimes have to think about is spacing them around alcohol. I don’t drink much but do enjoy a glass of wine in the evenings, so when I do that I either take my evening tablet at around 4:30 or just before bed.
I’m afraid I don’t really know anything about the other drug you’ve been offered. Are you leaning towards one or the other?
Many thanks for taking the time to reply to my earlier post. I have also posted my question on another MS forum to try and gain as much feedback as possibl from others and have found quite a few people saying the same and that they’ve opted for Tecfidera too.
I guess my question / concern here if I were to opt for this also would be how manageable it actually is? I am just concerned that as I would need to take a tablet twice a day - every day that I may forget to take a dose? Did you find it easy to adapt to / does it become the new “norm” taking tablets twice a day instead of injecting? Any further advice you can share would be appreciated.
You have to find your own method which fits with your life. When at home I keep them near to the table. Take one with breakfast the other with tea. Have always taken with food never had any significant problems. Just restarted after a six month break. Occasionally forgot when out of routine, eating out or with friends or on holiday (if you can remember them). Usually remembered and used it as a good excuse for cheese and biscuits!
Ideally the capsule should be taken 12 hours apart, but is probably more important to take with food and not to forget. To start with it is suggested to take with something fatty, but when established managed 5:2 dieting. You will find your own way.
I keep mine on the shelf above the kettle which helps to remember and also set reminders on my phone. Even then I’ve forgotten the odd one here and there but very few and only when out of routine like has been said before. It’s surprising how quickly it just becomes your new normal.
Hi, I was on tecfidera, which was my 1st DMT for 12 months. I loved it! So easy to take. I set reminders on my phone. Sandwiched it in between food I enjoyed & had no side effects. Once I got to the 12 month stage I had to come off it though as my lymphocytes were dropping & not recovering. That was 17 months ago. I’m told it’s highly unusual for it to take this long for them to recover, but I’ve been on any DMT in the interim. Thank heavens my MS has been quiet. Would I try tecfidera again, yes, but I’d want my lymphocytes monitored monthly to ensure they did not dip too low. I hope that helps!
As others have said, I set a reminder on my phone, but am well settled into a routine of breakfast and dinner as tablet time. 12 hours apart is the ideal, but not essential. It really becomes the norm very quickly.
Hi I had tecfidera for about 4 months but had to stop it due to low lymphocytes and being positive for JC virus. Minimal side effects. Just stopped Copaxone having had it for 2 years but new lesions on brain mri and relapse due to likely spinal lesion. Starting Kesimpta on Thursday. Just want to get started on something that hopefully helps. Good luck with what you choose
I have been on 2 trials for this drug at Sheffield hallamshire teaching hospital first trial was one old drug tecfidera versus the new kesimpta and most recently just a trial for kesimpta which is the new name of ofatumumab I do an injection at home once a month since using kesimpta I haven’t had a relapse and no side affects except I think some weight gain but nothing serious I would def recommendd it I was diagnosed in 2017 when I was tecfidera I had new lesions on mri and some hair fell out but I know not everyone is same x