So I’ve been on ofatumumab (Kesimpta) for around 2 years after 2 rounds of alemtuzumab and others.
It’s been pretty uneventful, and other than the horror of the loading doses, all has been well. However…after my last two injections, I have developed an awful burning sensation over multiple parts of my body. It comes on 24 hours after the jab, and then increases in severity, only to die back down again after about 3 weeks.
I have not changed anything in my life; no new drugs or whatever. I realise correlation does not imply causation, but it seems odd to me that this is happening after each jab.
I guess what I’d like to know is if anyone else has experienced this? I have spoken to my MS team about it, but I hadn’t made the link between Kesimpta and the sensation.
I don’t know whether this is any help at all but, I started kesimpta last October and was doing well on it. Then February/march time I noticed a decline in mobility and increased spasticity, then the spasticity got worse from the waist down in both legs and my left arm, the psoriasis started, it’s at its worse the day after I do my injection, I’ve recently experienced stabbing pains in my legs in various places and a flare up of Trigeminal neuralgia. Because my ms has been deemed as being highly active I’m reluctant to just stop, as there’s no appointments available till August to discuss a change in DMT. I would suggest seeking help from your ms team.
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Hi,
I’ve been on Kesimpta over 2 years and I don’t think I’ve had a reaction like this. Certainly nothing correlated to jab time.
Your MS team must have hundreds of people on Kesimpta and might be able to say if they’ve seen this before. It sounds like a difficult dilemma. If your pain is in fact unrelated, it would be a shame to ditch Kesimpta and get a relapse on top of it all.
Perhaps it’s worth thinking about what other DMT you might try if you do decide to switch.
Have you tried pain relief for your burning sensation? Perhaps a GP or your MS team could prescribe something for nerve pain. I’ve used amitriptyline (before Kesimpta, symptoms not linked) and it started to work well after about a week.