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@DalJoy 

EditedLast reply

DalJoy

Stopping Gilenya (fingolimod) to start Kesimpta

Hi everyone I have stopped taking Gilenya today in order to start the 1 month 'wash out' period required before changing to Kesimpta (I have treatment failure on Gilenya having just had a relapse). Has anyone else been through the Gilenya wash out period? I'm fearful of having some sort of rebound while waiting to start the Kesimpta and looking for reassurance :)
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@Breezy19
@Breezy19
 

Hi @daljoy.I hate that I’m the first to respond, as I did have a rebound, and that’s not the reassurance you’re looking for. But I do still think I’m part of an unlucky minority, and I hope that perhaps my experience can still help you through this period. I kept a very thorough log of what happened. I first experienced rebound symptoms 6 weeks (to the day!) after stopping Gilenya. They were new symptoms that I’d never had before, and they were fairly obvious (super weak left arm and hand, affecting my ability to type and grip things). Other symptoms developed over the next few weeks. I was still able to function pretty normally throughout the rebound and continued working.By the time I got an MRI done, there were lots of changes, but by the time the rebound symptoms completely resolved (2months later), all those MRI changes had significantly improved. My advice? Keep in touch with your MS team. I probably waited too long with the new symptoms before getting in touch with them, because I thought “well this is to be expected” and just got depressed about it. It was actually someone on shift.ms who said I should tell my team. My neuro acted super quickly once I told them my symptoms. If I’d told them earlier, they could’ve acted earlier. In positive news, Kesimpta is great. Been on it 18mths now, and no relapses. Very easy to use, and the customer support (delivery, follow-up calls, app to help you track it) has been super helpful. I’m in Australia, so I’m not sure if the customer support program is the same everywhere. Odds are, I hope you will be like the majority of people and have no issues whatsoever. But I hope my story can reassure you in a way to know that a rebound isn’t the end of the earth, and if it happens, to simply make sure you flag it with your MS team. 👍😊

1
@DalJoy
@DalJoy
 

Hi @Breezy19 thanks so much for your great response. I am only doing a 1 month wash out with gilenya before starting kesimpta so I am hoping there is a lower risk of rebound. I've read that the risk really increases by 6 weeks. I'm really glad to hear you are having a positive experience with kesimpta. 👍🏻