I said I'd write something about my experience with my new drug Fingolimod (Gilenya) but have been avoiding it for a long time now. I think I just didn't really want to re-live the first few months as to be honest, they were hell. Once I was well enough to use the internet I searched for hours to try to find anyone who'd had a bad time on the drug but couldn't find any negative stories. If you're telling a positive story of your experience with Gilenya I hope this doesn't sound like I don't like your blog, there are a lot of talented writers talking about the positive side of Gilenya at the moment & I love having a read. I hope I can join you in being positive about it soon but apparently I'm a bit of a medical anomaly. Well, I hope I am, it was horrible. Just in case anyone is struggling with the drug, or thinking about starting & can only find positive stories, here you go:
I started Gilenya on 18th December 2012, I went into hospital for the compulsory 6 hours monitoring after taking the 1st dose (I believe in the early days of this drug being available someone died in the first few hours so they're understandably a bit cautious) and passed the time by watching TV on my iPad (good idea if you’re wondering how to pass the time and don’t fancy 6 hours small talk with random staff). Unfortunately I felt quite dizzy throughout the whole of the 6 hours so was kept for 8 hours in total, wish I had kept my mouth shut about the dizziness. I did have the quite bizarre luxury (?) of having two MS nurses with me the whole time, 2:1 care for 8 hours, a bit strange but I wasn't going to complain! I think they were just there for the novelty of me apparently being the third person in Nottingham to get the drug? Who knows.
The next day I was ‘resting’ at home and felt nauseous so went upstairs to fetch my sick bucket (yes, I have a dedicated sick bucket), I sat on the side of my bed with the bucket on my lap and must've fainted/blacked out as next thing I knew I was lying on my back on the floor half way across the room, arms above my head, bucket thrown towards the wall. Wish I knew how I ended up so far away from the bed and on my back?! Annoyingly, just before I'd gone upstairs I'd taken my phone out of my pocket and left it on the coffee table downstairs, so I just lay on the floor for 5 mins till I felt I had enough strength to get up & go downstairs to phone my husband. Luckily he'd only just left the house to go to college (I think. Don't really know if I'd been out for a long time?) so he arrived back home in about 10 minutes. While I was waiting for him to get home, I called my MS nurse just to let her know what'd happened, she said I needed to come straight back to hospital, NOW. Such fun. This resulted in more monitoring, 3 hours ish? I think? And I was sent home again, this time with some lovely anti sickness medicines - Ondansetron & Metoclopramide.
Over the first week I gradually felt worse & worse and had to make the horrible decision that we wouldn't be able to travel home for Christmas. I haven't had a relapse-free Christmas for the past 4 years now so this was particularly hard.
In week two I started throwing up 2-3 times a day, I couldn't even keep water down, partly as my taste buds were being silly so water tasted disgusting, and unfortunately it still does. I ended up suffering approximately three weeks of throwing up 2-3 times a day, taking me down to a ridiculously skinny 7 stone 3 lbs., with my eyes so dizzy/spinny/wobbly that I kept them shut for about a week. I ended up spending about 4 weeks in bed as even getting up to go to the toilet & back made me vomit. Did I tell you that I was regularly waking up in the middle of the night to vomit? Yep, being woken up at 3am with just enough notice to grab my sick bucket which was living beside my pillow. Literally no other reason for waking up. Thank God I always had a couple of seconds notice of the impending vomit or this could have been a much messier tale.
After approximately 4 weeks I was able to open my eyes enough to watch TV (I’m sure a normal person would say ‘and read books’, but I’ve only read 6 books in my life so thats not really a thing) and finally managed to venture downstairs without throwing up! Throughout this time my balance was very dodgy, I listed to the right, even when I was sitting down I still drifted uncontrollably to the right (very weird). Walking was a mission, I couldn't do it without help. I only managed to walk when leaning on both of my husbands arms, and even with this support was still falling into walls, doors, banisters, floors... I also had very weak legs, I fainted/collapsed-not sure what happened this time, once more on the way to the toilet. Even with assistance I was still falling to the right.
The next delightful chapter of this horrible tale was that after a month/5 weeks of being on Gilenya, my left eye decided to float around on its own, think lazy eye style. I could see, just about, but it was double vision if I had both eyes open. Luckily if I held one eye shut I could see mostly fine. This did slowly improve but it took about 2-3 weeks to be able to see straight out of both eyes and a further month and four visits to ‘eye casualty’ to see single vision when looking to the left. And a course of steroids.
At the beginning of March I managed to get up from a chair and go to the toilet on my own (woop woop!) so could be left on my own enabling my husband to finally go back to uni (AKA 'vicar factory') part time, then full time a week later.
Throughout the whole duration, the side effect that has upset me the most (as there's literally nothing I can do about it) is the ridiculous amount of hair loss, especially as according to my neurologist & MS nurse my hair is not falling out (um...do you want to come round and explain that to my hoover?) and if it is, its just because I'm old. Thanks. I'm 26.
Unfortunately, as you may have already guessed, the second part of this story was me having a new relapse. Yes, I had a relapse whilst taking Gilenya. Actually, I've had two relapses now, but I'll tell you about that another time.
Luckily the story does get a bit better but it was really tough at the beginning, especially as I wasn't expecting it. I wish someone had warned me of how horrible this little pill could be, but I’m glad I started taking it as I would have always wondered.
Just in case you’re curious, in addition to the hair loss, here are the side effects I have experienced on Gilenya so far:
• nausea - am still taking meds everyday for this
• vomiting - 3 times a day for approx. 3 weeks
• fairly constant light headache - think 80% of the time, but the majority not quite bad enough to take paracetamol for
• seeing stars - lasts approx. 30 mins, like a migraine but with no pain, occurs approx once a week/bi-weekly and is something I’ve never experienced before
• itchiness - just randomly for no reason, like on an arm - very weird
• stingy eyes - in the corners and when looking to the extremes of my vision (although apparently the extremes is normal, even though I've never had it before)
• weight gain & increased appetite, which isn't necessarily a bad thing apart from the fact that having put on two stone since Christmas I can only fit into two pairs of my trousers and ZERO dresses - I had to buy a new dress the other day for a wedding, obviously that was quite traumatic (wish there was a sarcasm font)
• And, what might be the only real positive, according to my husband I have become 'quite giddy', I think he means hyper? Positive? Maybe its taken him until now to realise how absolutely hilar I actually am? ;)
