Four really, really stressful words to be told. It’s a bit like being told ‘I know you can’t breathe, but we’re taking your oxygen away from you’. No Hydrocortisone = death, pretty quickly.
It’s been a little bit stressful the past few weeks trying to sort this. There’s been a supply problem for Hydrocortisone in the UK recently, lots of patients have had issues. I don’t know the ins and the outs fully, and I’ve been told so many different things by different people, but the long and short of it is some pharmaceutical companies bought each other out and some types/brands became unavailable. The now already limited brands aren’t stocked by every wholesaler distributing to pharmacies, meaning you can’t just go to any pharmacy and get the script, you have to work out who supplies your pharmacy to make sure you’re getting the right brand. It also comes down to money- money can be made if a patient accepts the generic (cheapest) brand, so I’m told.
It gets more complicated because the NHS will only fund 10mg tablets. 2.5 and 5 mg tablets are manufactured but the NHS won’t pay for them, which means they’re not available. However, as adrenal insufficiency patients, we tend to dose in 2.5mg and 5mg multiples as well as 10mg, meaning we have to split the 10mg tablets in half or quarters. The problem is, only a couple of brands of Hydrocortisone are licensed to be split in half: the pharmaceutical company of the generic brand available everywhere and charities associated with AI have categorically said that this generic brand should not be given to us to treat AI for less than 10mg because the compound is not evenly distributed through the tablet meaning they can’t guarantee we’d be getting the right dose when split. And, unluckily for us, it was some of the brands which you can split in half which vanished off the market.
I rang around a few pharmacies and found out the different wholesalers and still no Hydrocortisone in stock. I’ve made ‘friends’ with the pharmacist over the road and he managed to get a box (30 tablets) of the brand I need in with some difficulty. Then we worked out how long I’d have left if I used the generic brand for my multiples of 10mg and the other brand for the 5mg and 2.5mg (nothing like additional maths to add to the already complicated maths of your condition!) and he said he’d ‘work on it’. We also had a bit of ‘time’ because I’d been told to stress dose by the hospital, which helpfully meant that all my doses were in multiples of 10mg for a couple of weeks! After much digging around on his part, we found out that, for now, one pharmaceutical company bought out another company and while they’ve got a different name on the box, the tablets inside are the original brand. Except this might also change in the future, so for now I have to open every packet I’m given before accepting it to make sure the tablets are still the same and hasn’t changed. A very minor convenience in comparison to not having any!
That pharmacist was great. I very much appreciated his efforts to make sure I got what I needed!