Symkevi Diary – My Experience on Symkevi (Symdeko)

My 5 Day Experience on Symkevi (Symdeko)

Symkevi (Symdeko) packaging
The Symkevi (Symdeko) packaging

I’d been on Orkambi for three years when I was given the opportunity to switch onto Symkevi. Symkevi (or Symdeko in the States) is the second generation modulator that targets the cause of CF at the gene/protein level (for some of the CF population).

The initial ride with Orkambi was troublesome, especially on the chest and it took me about 8 months before I had built up to a full dose. Initially, I started on a quarter dose, and even this lead me to being on my NIV almost constantly for 3 weeks.

People often ask me if Orkambi made a difference to my health. As I started it just after becoming really ill, and having a big decrease in lung function it is difficult to compare like for like. Either way, I had stabilised on Orkambi. My lung function didn’t change, but I felt a bit sturdier, like I was able to keep weight on better.

Symkevi (Symdeko) Diary – The Side Effects & More…

Symkevi Diary – Day 1 (Wednesday)

Symkevi (Symdeko) – Quite nice and slick!

I started Symevi at the end of a two-week admission for IVs. I was told I was able to take my final dose of Orkambi in the evening and then the next morning I could take my first dose of Symkevi. They said that everyone that had switched over from Orkambi found the change over easy and they didn’t expect me to have any side effects.

I didn’t really notice much the first day – but I remember my sats were 96% in the evening. I thought it was an issue with the machine, and it must be broken, but no, these were my sats and I wasn’t complaining! I hadn’t really got any expectations of what Symkevi might do, and kind of forget that I’d changed over.

Symkevi Diary – Day 2 (Thursday) 

The next day when my physio came in, I remember remarking to her that I felt like I could go for a run. We laughed and said jokingly, ‘well maybe it’s the Symkevi!’ 

 Symkevi (Symdeko) morning tablet
The morning dose of Symkevi (Symkevi). This tiny pill contains not only Tezacaftor but Ivacaftor too!

Anyway, I went home that day, and found I was remarkably less tired than usual after the packing/unpacking and traveling. In the evening, I started feeling ‘weird’. Almost like an anxious, wired feeling with a racing heartbeat. But I also coughed up some old looking gunk from my chest.

That night I had some difficulty sleeping…

Symkevi Diary – Day 3 (Friday)

Today I felt quite good and decided to take my dog for a walk. I thought I’d take her by the river so she could run around in the open spaces, not expecting to get far. But I started walking and then just found it easy so carried on! I ended up walking 5,000-6,000 steps which is extremely out of character, especially the day after being released from hospital!

I only needed to sit down once – again, usually I’d be stopping regularly and be struggling to catch my breath. I definitely noticed my lungs were feeling good and breathing was much easier than usual. The walk was a pleasure! 

On the way back from the walk, I treated myself to some sushi for lunch. I noticed I was having difficulty finishing it. I assumed it must be that my body didn’t need as many calories as it wasn’t working as hard. I was just surprised as I can usually polish this usual packet of sushi off and have room for one (or two) other accompaniments!

Even going to the park earlier in the day, I found I was almost manic with my activities in the afternoon. Usually I’d do one activity and that would be it energy wise for the rest of the day (even when feeling good – when not feeling good, I can barely do my treatments and medication as I’m so exhausted!).

But You Look So Well - Selfie on Symkevi (Symdeko)
Wired as hell and in a wedding suite unattended – what could go wrong?!

I washed my make up brushes – a job I pretty much never do. Definitely noticeable that I had more motivation and energy to do things.

I coughed up some decent sputum including some plugs over the day.

But I also felt completely wired. Like I’d drunk a ton of coffee (or I imagine – I don’t like coffee) or taken too many drugs at a festival washed down with one too many vodka red bulls. It reminded me very much of the time, in the early 2000’s I went to an event called the May Day Ball in Oxford…  and my friend and I took the majority of a packet of Proplus (caffeine tablets that people used to take before they could get their hands on normal recreational drugs – I jest but, you get the picture!), as well as whatever cheap version of red bull they had…. Had a great time (I think…!?) then cut to getting in at 8am and lying in bed with my heart pounding unable to sleep! Wired as feck!! 

I noticed that food felt really strange in my mouth. It was almost like my mouth was cleaner so I could taste food more intensely. Textures and temperatures of foods put me off. I recall trying a tiny bit of brie and just thinking how cold it was and not a pleasant feeling in the mouth. 

Again, I had quite a troubled night of sleep.

Symkevi Diary – Day 4 (Saturday)

Cystic Fibrosis Blog - Fancy Wedding Suite
This is the room I got ready in and was *really tempted* to open the chilled champagne that came in and get in the big copper bath! “The Symkevi made me do it!”

This was an interesting day(!) We were going to a wedding in the Cotswolds. The couple knew about my health issues so kindly offered me the use of their room so I could get ready in that and miss out on the actual ceremony. Honestly – people like this make my life so much easier. They were of the mindset that if I could attend any of it they’d be delighted, and not to worry about the boring bits!

So I was in this super fancy hotel room getting ready. I almost felt a bit drunk, certainly wired and hyper. As I was getting ready a member of staff bought in some fancy biscuits and a bottle of chilled champagne and two glasses. I didn’t do this…. But… I had this strong urge to run myself a bath in their enormous copper bathtub which was in the middle of the room and to start drinking their chilled champers in the tub. Talk about taking the piss!! Instead I put Kisstory and started to enjoy the beat. I actually felt like I was coming up on drugs.

When I got downstairs and started mingling with people, I felt like I was on a completely different planet to them. Everyone seemed sensible and I honestly felt drunk or as high as a kite, and I promise you I had not touched that bottle of champagne or any other alcoholic drink!!

I felt so jittery and unable to relax I decided to have a glass of the champagne being offered. I rarely drink but thought it might help settle me a bit as I felt so wired. At first, the drink went down Far Too Well!! And I thought, ‘oh that’s helped matters, I’ll have another one’. But within a few minutes through the second drink, I felt as if I was really pissed. To the level where I needed to go and sit in a room quietly, on my own and not converse. I could barely stand up and decided not to finish the second drink.

At the meal, which looked delicious, I really struggled to eat much at all. My stomach felt sort of knotted and I had no interest in food… And was feeling really jittery after an uncomfortable and disturbing encounter with a magician (I’ll tell this story another time!)

As the day wore on, I become more and more tired. My heart rate was raised for me and I was having difficulty with my balance (not due to the booze as I stopped midway through the second drink!). I felt really quite uncomfortable both physically and mentally, as well as having little interest in food. Honestly, the cheese and cake in the evening part was hard work to even attempt to eat!

Gary Stringer from Reef
Getting a photo with the lead singer from Reef, Gary Stringer – very friendly chap!

The high point of the wedding was the appearance of the band Reef, which the Groom had arranged.

The lead singer, Gary Stringer even hung around afterwards, so obviously we had to get a photo with him!

I drove a few of us back to the couple’s house as they kindly let us stay. I went to bed and just could not sleep. My mind was in overdrive, my heart was buzzing; I did not feel good! This lasted throughout the night, and I ended up having a bath at 6am as I felt so weird and wired. I thought it might relax me. But I just sat in the bath as wired as before. I felt like I was in some weird documentary or drama highlighting the dangers of drugs!! 

Symkevi Diary – Day 5 (Sunday)

I was really wondering if I should stop taking the Symkevi that morning… but decided I should speak to the doctors first. I remember in the morning trying desperately to find something with 10 grams of fat in it for my dose. 

The newly married couple were having a BBQ at the Groom’s parent’s house. They had got caterers in and the food looked beautiful but it tasted so unappetising sadly and my stomach felt so knotted I couldn’t face it. I told my boyfriend that I would not be driving home as I felt so odd and hadn’t slept, and luckily he was tired from the day before, so we didn’t have to stay too long. 

But You Look So Well Festival Time
This is how my brain felt after five days on Symkevi (Symdeko)

I found my balance was quite bad during the day and my heart was racing too.

I felt so bad in the daytime that I called the ward to see if there was any CF doctor on call that weekend but there wasn’t so I planned to call tomorrow. Either way I knew I wasn’t going to be taking any Symkevi tomorrow.

I barely slept the following night either. I felt like I’d come home from being at Glastonbury for a month, but without the relief that comes from being around comforting soft furnishing and clean toilets! 

Symkevi Diary – Day 6 (Monday)

I managed to speak to one of the CF nurses and explained the situation. She advised me to stop taking Symekvi immediately, which is good as it’s what I was planning to do anyway! I felt like I was in a different world when I was trying to explain the situation to her! 

I felt like I’d spent a month partying at a festival … but to be fair I’m not sure a month of partying would be worth it for how dodgy I was feeling! I felt like I didn’t know my own body which was one of the scariest things. I was hoping the benefit my chest felt would carry on when the side effects stopped. Assuming they’d stop quickly!!

Symkevi (Symdeko) Side Effects

So whilst my chest felt better, and I gain some energy, this drug gave me some of the craziest side effects I’ve experienced in my life:

  • Racing Heart
  • Insomnia
  • Loss of Appetite / Altered Sense of Taste
  • Nausea / Stomach Pain
  • Headaches
  • Feeling Wired
  • Balance Issues

In conclusion, felt like I’d benefit from this drug if I could take maybe 10% of the (normal) strength I’d been on!

Visit the Vertex website or CF Trust site to learn more about Symkevi