I’m hoping to get some advice on if anyone has had any experience with either Tecfidera or Kesimpta. Following my first meeting with my Neurologist, he has given me the option to pick one of the above.
I understand that Kesimpta is perhaps the more potent of the two, with significantly higher levels of protection from relapses, but also acts as a worse immunosuppressant. I wanted to reach out to the community to understand a little more about each treatment, and the relative merits / drawbacks of each.
My neurologist has a slight preference of Kesimpta, but has left the decision to me based on the relative risks of both drugs and what I think would suit me best. Being 23, it feels like quite a big decision.
Hi, ive been on Tecfidera over 3 years. No relapses since starting it, annual MRIs all clear too etc. So i would recommend it. Next to no side effects, just some flushing during first few weeks after starting meds. 1 tablet taken twice a day with or after a meal, so breakfast and dinner for me. Im not a big eater in the mornings so i usually take with a thick fruit smoothy. Blood tests every 3 months are no real hassle either. There are, like most DMDs some potentially serious risks, but they are vanishingly rare.
Good luck in your choice.
Hi, I was on tecfidera & got on with it well, other than after a year, I had to come off it as my lymphocyte count had dropped too low. It took about 2.5 years to recover, which is unusual. I was DMT free for that time as I couldn’t take anything else. So lucky as I had no relapses whilst on tecfidera or whilst I was meds free.
Just started on Kesimpta - done 3 injections. Next to no side effects.
Kesimpta is meant to be more effective. If both had been offered to me at the start, I’d have picked Kesimpta for that reason. I hope that helps - good luck.
How long should it take for Lymphocytes to recover?
On a similar journey except I had a relapse when off DMT put back on Tecfidera and lymphocytes dropped again so now not anything. Been offered Aubagio without explanation even though I suggested Kesimpta. Not seen anything that would explain the decision.
Does the patient information leaflet for Kesimpta have any warnings about low lymphocytes?
Hi CRD, I’m no expert, other than my own experience. I was advised lymphocytes often dip up until you’ve been on tec for 6mths, then they pick up. Mine didn’t, kept dropping, reached 0.3 and I came off it. No-one could explain why they took 2.5 yrs to stabilise above 1. I had monthly bloods done. They moved about all over the place. There was no rhyme or reason to it. They’ve never reached pre-tec levels. Very frustrating.
Not sure how I came to be offered Kesimpta, but very grateful I was.
They aren’t sure exactly how Kesimpta works, but it doesn’t target your lymphocytes. You have to get 3mthly bloods done to check for immunoglobulin levels. Hope that helps?
To echo what others have said and add my own spin. My Lympho count has been fine since i started Tec, so i guess everyone’s situation is different.
That said, Kesimpta is newer so that would imply it might be a more effective DMT at managing relapses, hence if i was starting my MS journey over again today that would likely be my choice.
That said, Tec, in my experience has been great for me.
Thanks for the replies. My Lymphocytes were good before starting Tecfidera. My understanding is that a dip is expected. The normal expectation for the general population is it should be at least 1.0 Some centres have a limit of 0.8 others 0.5 before considering taking you off Tecfidera. I found it no problem taking it. Going out for meals in the evening and forgetting to take the capsule was a good excuse for cheese and biscuits before bed!