I have been on REBIF for years and my consultant has suggested researching the possibility of switching to Ponesimod or Kesimpta which weren’t available when I first went on my REBIF 22 treatment (approx 20 years ago).
Has anyone any similar experience? The REBIF has been successful in my case, steadying out to no major relapses for a long time, but the option of pill format or once a week injections is tempting.
I’m currently injecting three times a week and the site areas are uncomfortable, but certainly not unbearable. I have no other noticable side effects.
Obviously I’m thinking ‘if it’s not broke then don’t fix’, but the option of switching to something which might restrict relapses and help me longer term (I’m 53) are tempting.
Also, I have concerns changing meds unsuccessfully might mean I might not be eligible to go back to Interferon.
Hello @JO-70
Kesimpta once-a-month, for JP, I’ve had no problems but can’t speak for everyone.
It’s done wonders for my constant back ache imo.
I really look forward to next month’s dose: I have noticed I always feel lethargic in the preceding days b4 I have it and then I pep up again after.
I was on Avonex DMT for a good few years b4 it started to wane, then went on Lemtrada IRT, which really didn’t agree with me.
Tbh if your current DMT still works, why change it? Hope you can decide hich treatment to be on.
Hi,
You’re a superstar first and foremost for coping with 3x weekly injections for such a long time. I have been on Rebif, then Copaxone and now I’m on Ponesimod.
I get a lot of infections over the winter months, moreso since starting on Ponesimod, but I am asthmatic too so I don’t do well in the cold and damp weather conditions and I also have A1AT so that probably doesn’t help much either.
Ponesimod has been much easier for me to manage in terms of site pain (there obviously isn’t any now) and it will be a lot easier to travel abroad with my medication - no need for ice packs and specialist equipment etc.
I’m under a significant amount of stress at the moment and I’m experiencing some new and unpleasant symptoms, also a flare in old symptoms in terms of loss of bladder control on particularly bad days. I’m on my 6 month mark for Ponesimod so due a re-scan to see if there is any new activity going on, or whether this is all stress related.
I think overall the transition from copaxone to ponesimod went well and I much prefer the daily tablet to injections, side effect wise I am now immunosuppressed and my hair has fallen out quite a bit and still does, my nails are extremely weak and snap / peel. But I accept this over the side effects I was experiencing from the injections.
