I received my first batch of Siponimod yesterday. After waiting months for them I was then really worried about taking them - I’ve never been on medication before and really don’t like the idea.
But I started today on an increasing dose. Today I’ve had a slight headache but that could be down to the weather or worry about starting the tablets or anything, and its not severe, so no problems so far
Sounds like you’re starting your titration period. I think I am lined up for the same thing in a few months’ time. But slightly different - I was on Tecfidera for a number of years before they took me off it. Well, the Tecfidera did me well, 22 years since diagnosis I think I have been lucky! I will be interested to hear your progress. By all accounts should be fine… Good luck.
Hello, I’ve just finished the titration period of siponimod and will be starting the full dose tomorrow.
I’ve just read the instruction on the dispensing label of the full strength pack and it tells me to take one tablet twice daily…its only meant to be taken once a day!
I shudder to think what would happen if I followed the dispensing instructions.
On the plus side - no real side effects from these tablets, lower BP and a slight headache and thats it. I’m lucky cos I’ve borrowed a BP machine and can keep an eye on my BP and will keep my IQVIA and MS nurses informed.
Hi. My Mayzent is arriving tomorrow at last!
Can’t get hold of the nurse who is supposed to be here
when I take the first tablet! I’ve been leaving here messages no response. I’ve been waiting so long for this medication now when I receive it I can’t begin to take it! Did you have a nurse with you on your first day of taking the medication? Glad to hear that you have been alright with it so far
Hi Dorajack, no i didnt have a nurse with me but she did phone me the day before i started them just to go through taking them, and the evening after my first dose, she is also supposed to be phoning me tomorrow when I go onto my full dose. I think it depends on the area you live in if the nurse comes out to you.
In Cornwall the Drs and MS team are supposed to keep an eye on me ( I dont hold out much hope of that happening )
sounds like you had a wait to get your tablets - I was told I should start them in March but only received them last week!
I wonder why the nurse has to be with me when I have my first tablet and for you it wasn’t necessary?
Maybe I’m special ha ha. I’m in Essex. I’m excited and nervous to try this medication. Mind you I will try
anything that will help this shit illness. Keep well
I thought the nurse had to be with me but she keeps in touch and as it happens I’m quite glad cos I would have had to take the day off work.
I was worried about taking them at first but like I said, I didn’t suffer any side effects. I didn’t drive on the first day as recommended cos they can lower blood pressure and make you lightheaded and dizzy.
Hope you get hold of the nurse and start soon, take care