Another one bites the dust/all hail prednisolone
Another ground breaking systemic treatment, another “failure”. At least this time I’m well within the Guy's and St Thomas' dermatology system so I know my path to the next step should be much quicker and more painless.
After around 6 months on Abroticitib a Jaks inhibitor (brand name Cibinqo by Pfizer), with initially strong results, the effect began to wear off. Slowly at first and then rapidly. It wasn’t quite as miraculous as Dupilumab at the start but I’d have been very happy if those results had stuck around.
I immediately paid for a private GP appointment for £40 to get a prescription of Prednisolone. If you can’t get into your NHS GP and you’re in the position to, don’t muck around, get the private appointment. £40 to get the help you need is a small price to pay. Should you have to? Of course not, but the situation is what it is and when you feel like you’re being eaten alive the priority is not the fairness of the situation, the priority is to get you out of pain. There’s loads of different ones, Dr Online, push doctor, tap GP, I tend to do the rounds on all of them and see who’s got the earliest appointment.
I made sure to not hold back on how much I was struggling psychologically. There’s a time for a tough upper lip but it is not when you’re in front of a HCP. It ultimately makes their job much easier if they’re able to say that prescribing you a certain medication is an absolute necessity due to the damage your skin is having on your mental health.
My word Prednisolone is magic stuff. It’s given me a reset/relief that I needed desperately and allowed time for the real medication to kick in. I understand the negative side effects (decreased bone density etc) but when you feel like you’ve been dunked in a vat of acid and you haven’t slept properly in weeks I’ll take those side effects thank you very much.
I completely understand that HCP’s have to stress the dangers of Pred in order for it to be taken responsibly. However it can be a bit frustrating when you have no option but to take a potentially harmful medication and you’re constantly reminded how you “shouldn’t really be on it”. This is another reason why it’s important to hammer home the point that this is not optional, as otherwise they may resist giving it to you.
Pre pred:
Post pred (4 days later):
Fortunately I was able to attend Guy's as a walk in a few days later and I immediately felt in good hands. You can never underestimate how vital it is to an AD sufferer when they’re at their lowest to feel like they’re talking to a HCP who is fully empathetic to the situation and grasps the urgency.
Although there does seem to still be some bureaucracy in terms of actually getting the medication in patients hands. Again I can fully appreciate these are serious medications and protocols need to be followed. However you’re dealing with patients who are psychologically on their knees with every day being a challenge to get through.
I therefore do think there could be room for improvement here. Especially with the positive effects of Pred being on a timer before you have to up the dose and put yourself at greater risk. I’ve got a call with Guys tomorrow so hopefully I’ll have an update on my first delivery of my next medication; Upadacitinib.
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