I have had a call from my ms nurse today to inform me I need to call my GP and have some bloods taken to check liver function and make sure i’m fit and healthy and then I can start my journey to start Siponimod.
I’m feeling excited and really glad something is happening to try to stop/slow down this disease but as someone who has always shied away from taking even paracetamol - I’m nervous about the side effects.
I know everyone reacts differently and i know its a case of wait and see, but I just wanted to share
I’ve also been told that I might be able to start on this drug.
An MRI is planned to see if there are any new or active lesions, apparently this is one of the criteria ?
Basically that damage is already done !!
Why we cant just go on this drug anyway as a precautionary measure to safe guard future progression is beyond me.
My consultant said old lesions dont count, even though they might be causing issues !
I’m also on the Simvastatin trial, which is to see if the drugs slow’s down MS progression.
The impression I had was that so far Simvastatin results are not very promising ?
Wont know for another year or so if I’m on the placebo or the actual drug.
Apparently a good liver function is vital for Siponimod, so that will come down to blood tests…
I have got to have bloods taken next week to check blood count, liver function, renal and VZV (whatever that is)
then if that is all ok a IQVIA (??) nurse will come to me to take blood for geno typeing so i can get prescribed the correct strength tablets
i did ask my ms nurse about fampridine which i believe you have started but she ( and i agree) thinks its better to try one at a time so hopfully i will get on well with siponimod and maybe try fampridine
its strange because i have always shied away from taking medication but now im up for all i can get that will help
how are you getting on?
I will try anything to get back as much “normality” that is possible.
Did your nurse mention an MRI scan before siponimod can be offered ?
My consultant said you have to be showing more recent lesions or lesions that are active.
He also said to try one drug at a time, hence Fampridine first and then a combination Fampridine & Siponimod.
He said that this combination is best available currently for SPMS.
I was told I dont need to have a mri, as the one I had last year will be fine.
Can I ask if you pay for Fampridine? and how much is it? I was under the impression the first 2 weeks trial are free then you need to pay - not sure how my finances would take to that if i was eligible
No payment as I live in Wales.
Fampridine has just been made available free on the NHS here in Wales.
For us it’s a months trial, reassessed after 2-3 weeks.
We do still need to meet tight criteria at the reassessment to stay on the drug.
I’ve also tried Sativex for a while but found it did nothing.
I really do believe that being on the Simvastatin trial has opened doors to being allowed the chance to try drugs such as Fampridine ect.
When I first started the Simvastatin trial I was a bit poorly and was asked on a few occasions if I wanted to stop, but I offered to continue, I believe this was appreciated by my consultant and MS clinic in general.
Having people start these types studies and stop half way through doesn’t help at all.
I will say, even though we get these drugs free here in Wales, I will without hesitation come off them if I feel theres no improvement or the amount of improvement does not justify staying on them.
I did this with Sativex.
I could still get Sativex now if I wanted to, but it would just be selfish, as it did very little to me, yet it might help others in the que ?
Just because these drugs are free in Wales, it doesn’t justify staying on them when it might benefit someone else more.
There is no point in staying on a drug which is not helping, you might as well move on to something which might help - not all drugs help everyone in the same way
Siponimod will be the first treatment I will be trying, fingers crossed it works with little side effects
once ive been on siponimod for a while i may try other meds
Update - 2 weeks ago i had a nurse come to my house to take some bloods for geno typing, an ECG blood pressure and pregnancy testing (negative im glad to say) This was all to find out if I can metabolize siponimod and to find the strength of tablet I can tolerate.
I had a call from my ms nurse today to say I can have the tablet and it will be the stronger one- but there is a delay with the pharmacy getting the tablets to me and we have no idea how long that will be.
So its good news… but more waiting!