What Has Symkevi / Symdeko Done for Me?

For those of you who don’t know, I have Cystic Fibrosis and last year I was very lucky enough to have been given a drug that helps keep my health a bit more stable.

In July 2019 I received Symkevi (Symdeko in the US) on compassionate grounds from the drug company Vertex. It was not available on the NHS at the time but in November last year the government approved it for use within the CF community which was absolutely amazing!

I was very lucky to not have any side effects straight away and tolerated the drug really well but as time went on I did develop a couple…
For the first 5 months being on Symkevi I had headaches every day, at first I thought I was just dehydrated as I never drink enough during the day but the headaches were relentless.
The only thing that helped them slightly was Dioralyte, it seems that electrolytes were the key. That didn’t stop them coming back though…
The other side effect and the most annoying was the insomnia. I’ve never really had problems with sleep before Symkevi and I hadn’t changed anything else in my life so I knew it had to be the drug. I’ve recently told my consultant about this and he has prescribed Melatonin to help me sleep.

So that’s the bad points out of the way, here’s the good!

First of all I felt I could breathe deeper. Not all the time mind, but I do catch myself breathing slightly deeper than I ever used to.

My stomach issues are so much better!
With CF I suffered from bloating a LOT and because my pancreas doesn’t work my food doesn’t get broken down so I have to take tablets to do it for me.
With Symkevi I hardly ever get bloated anymore and I don’t need as many tablets to digest my food. This came about a month or 2 of taking Symkevi.

I don’t need as much insulin with my food anymore, this is probably one of the best things that Symkevi has given me. I used to need around 6 units with lunch and now I only need 3 units at most.

Another great way that Symkevi has helped my life is that when I get a cold I can actually fight it off! I’ve never been able to do this as when I got a cold in the past it used to go straight onto my chest and I get a chest infection then need to go into hospital for 2 weeks.
Which leads onto my next benefit…

I haven’t actually needed IV antibiotics since I started…
I had a hospital admission 3 months after I started but this was because I had a horrendously bad virus and they gave me IVs straight away because they thought I had the flu. Luckily I didn’t and my chest was perfect and wasn’t affected at all.
But since then I haven’t needed anything.

Symkevi never gave me any increase in lung function sadly or weight gain but I guess that’s because my lungs are already badly damaged. But I’ll take stability over nothing at all.

There is another drug on the horizon however and this one gives much better results.
Trikafta is already licenced for use in the US but of course, Britain is lagging behind…
This drug is my dream, I really hope that we don’t have to wait for it too long because honestly? I’m getting tired. Every single day is a battle and I need a break.
But I know that Symkevi has got my back and I wouldn’t be without it now!



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