Monday, 7 June 2010

Who the hell calls a drug CABERGOLINE?

19th May - 7 June

The frail and poorly little chickens who end up with an unhealthy dose of Prolactinoma will eventually end up with drugs of some sort that will reduce the tumour. Quite early on , my GP indicated that I would end up on a drug called Cabergoline (which appears to be the generic name for Dostinex).

I put my prescription in my wicker basket and skipped down the yellow brick road to the nearest pharmacy. They gladly took the prescription and asked me to pay up front - only then to find that they didn't stock the drug, telling me I could wait until the following day. Errr .. no! A quick refund and a trip to ASDA and .. they also didn't have the drug! Third time lucky - Boots (the chemist) found it under the brand name and managed to dispense twice the amount that the prescription had asked for. Well done Boots - I didn't even have to cash in my reward points.

One of the things I've been curious about is what it's like to take these drugs. Will it be like taking smarties and completely painless? Or will I spend half my time face first in the crapper!?!

Well, for me, it's been like this.

Wed 19th May - Take my first pill in the evening (started straight on 0.5 mg)

Thursday 20th May - Fine until midday - at which point my head spins and I spend a lot of my time resting my face on my laptop keyboard at work.

Friday 21st May - Seemingly fine all day

Saturday 22nd May to Wednesday 26th May - *cry* To be honest. I couldn't believe it! Nausea - dizzyness - more nausea. Those days were great days for lying flat on my back! A great way to lose weight as well as I was damned if I was going to sit down and have a Sunday roast in that state. Now! Caveats apply here. I suspect that it was the Cabergoline but there is no real way of knowing. I have two very young kids in the house and they have a great track record for bringing home bugs and passing them to Daddy. If you're on Cabergoline though - at least you can contrast and compare with my own experiences and make up your own mind. Around the 25th of May I spoke to my consultant who advised that if the nausea didn't subside, I should consider dropping back to 0.25 mg for a week. As I felt I was turning a corner on the Wednesday, I stuck with the full dose.

Thursday 27th May - Monday 31st May - Okay. Firstly the sickness passes. This is great because almost a week of moaning about sickness has bored me to tears. My poor wife must be fed up of my 'pity me' bollocks by now. Then for two days, I feel utterly fantastic. The kind of 'grrrrrreat' that falls out of Tony the Tigers mouth when he's trying to flog you a box of sugar saturated corn flakes. Could the drugs be working already? Is it just up, up, up (in more ways than one) from here? Well that 'high' lasted two days and so far has yet to return. For the remaining days of this period, I returned to the normal subdued 'me' just without the afore mentioned head spin.

Tuesday 1st June to Thursday 3rd June - 10am every day I slip in to a fog. Concentration goes out of the window and you can forget getting me to a) make any decisions - b) evaluate anything technical - c) follow the thread of any conversation - d) get a joke or remember the punchline - e) remember where I put my phone - f) remember where I put my phone again - g) WHERE THE HELL DID I PUT MY DAMN PHONE!!!

Friday 4th June - Monday 7th June - Fatigue has returned. From the moment I wake up to the moment I crash in to bed, I'm a dead weight. Limbs ache all the time. Around lunchtime I'm scuffing my feet across the floor. Mentally I'm wiped out also. I'm falling asleep all over the place (in the bath yesterday - in the waiting room at the hospital today as I waited for a blood test). The worst thing about this - and the last six months really - is the guilt. Guilt that my poor wife ends up having to pick up the slack. Sickness and Health? Better or Worse? No dammit! She deserves a break. It's only been three months since she had her left knee rebuilt after dislocation problems. Now she's running around wiping my arse for me. I owe her one.

This week I finally get my visual field test - and I also get my follow up consultation with endocrinology. I'm in half a mind to beg them to sort my hormones out and fix the damn fatigue. Perhaps I'll handcuff myself to a nurse and swallow the key .....


  1. Ugggggghhhhhhhh! I totally remember those days! I'm sorry it's affecting you so much :( I remember thinking I would rather be blind that go through all that crap. Good luck w/ it, I hope it gets better for you!

  2. Hello,

    My boyfriend started the cabergoline treatment 8 weeks. he still feel some of the side effects (swollen hands and feet). He's afraid that they're going to increase his dose. How long did it take for you to get used to the prescription? Any other advice? warning you have?

  3. Hello Alisa - sorry for the delayed response.

    I'll be honest, my experience of Cabergoline is that it was fine at low doses but that issues appeared as they increased the dose. For me there were (and still are) a number of subtle but nasty side effects.

    1 - Fatigue. The tough issue here is that it was fatigue that forced me to seek medical advice. Now I find the treatment makes me feel like an 80 year old all day / every day.

    2 - Mood. Since taking Cabergoline I've had changes in temper. I'm irritable and bad tempered all the time. Combined with point 1 and I'm not much fun to be around.

    So the initial nausea passed in a week or so - but there are lots of on going problems.

    Your boyfriend may not hit these specific issues but, as a partner, you have to be prepared for the possibility.

    Naturally, you need to speak to your Dr before making changes to your medication. Personally, I would have expected that if the side effects were temporary, they would have gone by 8 weeks.

    I came off Cabergoline for a while because of these issues and went on to Quinagolide - but that was even worse for me so I'm back on Cabergoline again. I hope he has better luck than me.