I’ve recently relapsed and my team want to change me from Tecfedira to either Kesimpta or Ocrevus. I wanted to know what if anyone could share their experiences on either drug to help me with this decision? Like how is taking/administering the medication, any side-effects, how do you feel on it, is it making a difference?
Thanks in advance!
Hi,
I’m on Kesimpta. I’ve been on it for 19 months.
Taking it: Is fine. They show you how to do it the first time. Basically the thing looks like a large whiteboard pen and you just press it against your thigh, hold it, then release. Dispose of pen in sharps bin (which they also give you, and subsequently collect when full). The great thing about this is that you don’t need to go into hospital. After the loading doses you do it once a month, on the same day each month. I have travelled with an injection pen, too - with NHS letter to get me through airports. They do need to go in fridge, but can be out for a while when you travel. Really convenient.
Monitoring: You will have to provide occasional blood samples and do phone appointments where they check on your health. Blood samples in my case could be done at GP, also easier than trekking into hopsital.
Side effects: First few doses can feel a bit rough - mainly the first - so expect this when you start. For me, it was very much like a reaction to a covid jab, if you’ve had those, or like a mild case of flu that lasted a few hours. Best advice I had was to take paracetamol about 2 hours after the first dose, to head of the worst. Then be prepared to retreat to bed… for the first 2-3 doses I’d say, maybe take in the evening so you can just sleep it off.
Since then, no side effects that I have noticed. At one point I thought I was getting more colds - a few in a row, one lasted a long time - but that might just be chance. They monitor your blood to check you are not getting too immune suppressed.
Making a difference? Hope so! I’ve had no confirmed relapses since starting. I do get regular little “things” like pins and needles. Neurologist told me they would be very surprised if I relapsed on Kesimpta - they do annual MRIs just to check for safety.
Feel free to ask any more questions. I know it can be hard to visualise what these drugs actually involve!
Hi,
I’m on kesimpta as well. Started in June so done the loading doses and two monthly injections. I chose this as liked being able to do it at home and not spend time going to hospital.
really good support for first injection from MS nurse and had follow up telephone call after finishing loading doses to check how I was getting on. Felt a bit rough after first two doses, a bit like having flu for a day. I take mine in the evening and take paracetamol just before. Haven’t had any side effects apart from those first two doses.
I”m quite early on in treatment so not had blood tests or MRI yet. No relapse yet. Symptoms I had before are still there which is what I expected.
It’s quite difficult to decide between treatments but for me the convenience of administering at home swung it for me. Hopefully it will continue to have the desired effect.
Good luck making a decision and hope you get on with whatever you go for.
Steve
Thank you, I think the thing I’ve been concerned about with ocrevus is taking at the hospital as well but wanted to do a bit of research to see if anyone thought it was worth going to the hospital for.
I’m glad to hear that there is still monitoring for you and you’ve been okay with it for as long as you have. Both of these are supposed to be way more immune suppressing than Tecfedira so I’ve mainly been worried about side effects and day to day living.
Hallo,
Like you I had a choice between Ocrevus or Kesimpta (they also offered Ponvory). I chose Kesimpta. I haven’t been on it for long, I started at the beginning of June, but it is supposed to be one of the best.
Ocrevus has a much longer half-life than kesimpta, meaning it stays in the body longer, hence you only need to take it every 6 months or so, but I preferred the ‘little and often’ option.
The first dose makes you feel a bit fluey (though apparently not everybody gets this) but after that it’s ok. I still take a paracetamol before my monthly injection, but have now dispensed with the Benadryl, which was recomended for the first doses.
I mostly feel ok on it, I’m often quite fatigued but that might be the MS, not just the Kesimpta?