Hi, my name is underthefloorboards!3 years of pleading before the hospital agreed to treatment.

underthefloorboards

Hi, I’m new here and looking forward to joining in the conversations, I’ve just started a high dose of steroids for an autoimmune disorder. I’ve been pleading for over three years for treatment, I acknowledge my condition was hard to diagnose but all I asked was to see if I responded, well I have and they are working, so angry that my condition has been allowed to deteriorate so badly during this time. I know this is not a cure and the dose will be tapered down to maintenance, pain was off the scale but now manageable, feel my body is not so inflamed, other symptoms reducing, thankfully. Have others experienced this sort of poor hospital patient experience, not just slipping through the floorboards but as one person once said to me ‘ not slipped you have been put there!

Albus_Scope

Hey there @underthefloorboards and welcome to teh community.

I understand that feeling very well, it really can feel like you've been bashing your head against the same wall for years, but we still aren't allowed to say "told you so" when something works. 😉
I understand they'll be wanting to keep an eye out for longer term side effects, as steroids can be quite nasty if used in higher doses for too long, but I'm really glad you've finally found something that works.

underthefloorboards

Thank you, reluctant at first but desperate, received all the info to make an informed decision, started off on 60mg per day for three weeks to reduce by 5mg per week until reach a maintenance dose, hopefully! Taking adcal vitamin D + calcium and Alendronic Acid once a week for bone protection. Too be honest having read the leaflet the Al. acid scare me most, but better than living as I was. My husband and family are already noticing the difference, at first I thought it must be a placebo effect in my mind but definitely not.

Rosie_Scope

Oh bless you @underthefloorboards, it's a massive pain sometimes just trying to get someone to listen when you often know your body best.

Hope you continue to feel the benefit of your medications and things keep improving for you ☺️