New Meds - Fingolimod

On Thursday 13th November 2014 I started my new medication - Fingolimod

For anyone about to start this treatment or considering starting it, here is a play by play of what to expect...

Arrive early in the morning at hospital and get your very own room. You'll also be assigned a cardiology nurse to spend the whole day with you.

ECG heart test which is sent of to the cardiologist who gives the OK to go ahead and start treatment

If all is well then off you go and swallow the pill!

You'll be hooked up to heart rate monitors all day and asked to do a urine sample at some point

On the hour every hour your blood pressure is checked and a HR reading is taken

Your heart rate is expected to drop but to be honest I didn't notice anything except for being a bit sleepy (but that may have been because I was lying  in a bed all day!)

LUNCH TIME [You'll have Nando's brought to you if you're as lucky as me!]

6 hours later you have another ECG and this is sent off to the cardiologist who hopefully gives the OK. They are basically checking to see that your HR has gone back up to where is was in the morning or higher. If it's lower you will need to stay in for a few more hours until it peaks.

Take home one weeks worth of tablets and wait for a delivery of the next lot!!

Thats what happens while you're there... i'll move on to what happens after in my next post.

P x

'The only thing we have to fear is fear itself'

Truth is, I'm scared. 

I'm going in to hospital on Thursday to start a new treatment (Fingolimod) which will require me to have my heart monitored for the day due to the effect is has on the resting heart rate. Doesn't sound like a big deal really but I've been taking injections three times a week for over a year now with little effect on my condition. I've been off any form of medication for one week now and come Thursday, it will be two.

Two weeks without my 'protection'. (Not that it was working anyway !!)

I'm scared though. Scared of starting a new drug which will in it's own way, take control of my body. With a history of heart problems in my family I can't say I haven't thought of all the possible outcomes, including the not so great ones. To add to the complications, I must remember to take this pill (on top of all the rest) at the exact same time every day and if i forget it even just for one day... I'm right back in hospital on that heart rate monitor.

Fingers crossed that this one will do the job and give me a little breathing space between the relapses!

This year has been relapse after relapse. Loss of sight, loss of feeling in every part of my body including my mouth (which still hasn't recovered yet!).

Whats next? MS is delightfully unpredictable. Each relapse brings news symptoms, new experiences and new challenges. This is one aspect of the illness I try to embrace.

Embrace the uncertainty. Take on the challenge and educate yourself. To anybody newly diagnosed I would say to give this a go as it's helped me manage my MS massively.

I get upset and scared, of course I do; but by not getting upset about the unknown, I eliminate about 90% of the crying!

I was reminded today of  a great book I read called 'A Million Little Pieces' by James Fray. Truth or not, I loved it. I engaged with it and I have a part of it tattooed on my ribs. This won't work for everyone but reading and re-reading a book with words to encourage me and remind me to 'Hold On' really help when you're going through a moment of fearing the unknown. A simple phrase keeps me focused and reminds me that giving up is simply not an option.

I will 'Hold On' and I will Beat MS.

P x