has anyone taken siponimod

Welcome and introductions
1

hi i have now been diagnosed with secondary progressive ms and have been asked if i would like to take the above drug
janie 54

2

Hi Janie, I have posted this same question, as I am supposed to starting Siponimod on August 23rd provided the nurse coming out next week, to do some checks and take some blood, finds everything ok? I had RRMS for 16 years and have detreated significantly over the last year. I’m 58. Please let me know if you start it and how you get on - I will do the same with you.
Good Luck, (It’s scary after 6 years injecting and the last 10 on Tecfiedra,) but needs must I guess.
Debs1

3

Sorry, not sure if I responded correctly before or whether my post is awaiting posting. just in case debs I have similar history to you , rrms and now after 17 years have moved to secondary progressive. Am awaiting to see if I can take siponimod and if I will go ahead. Have you had any advice on side effects or efficacy of the drug. Will definitely keep in touch
Janie

4

Thanks debs
I am the same had RRMS for 17 years and now , like you, have deteriorated and have secondary progressive. Will certainly keep in touch and like you have to have the checks first if I decide to go ahead. Have you had discussions with anyone reference side effects and efficacy of the drug?
Janie

5

Morning Janie, The only chat I’ve had with anyone regarding Siponimod is my consultant who was very ‘I’m changing your drugs as you have deteriorated’, and pointed out that if I wasn’t already taking medication would have even been offered it, then the MS nurse who in fairness answered what questions I could remember (Iwas in a bit of a haze still when I saw her) but the booklets she gave me were as much information as i have, like you I’m having trouble finding anyone who is already on it.
I do know the percentage of it holding back advancement of the disease aren’t necessarily great, but I guess its better than none!
I have the nurse coming to do the bloods and checks next week, I’ll let you know the outcome.
Take care Debs

6

Thanks so much debs, yes please let me know how you get on. I am trying to find a dmd doctor to chat over. If I find one and get any further information, will let you know. All the best, take care and hope all goes well with the bloods.
Janie