I can finally wave goodbye to the little bugger that is prednisolone!
I've been on 10mg of pred every day since I was about 16, after a bad patch of pleurisy and also finding out my ABPA had come back to visit and sent my IgE levels to a ridiculous 2000 (they're meant to be below 500 from what I can find out). Because it was the allergic response to aspergilliousis, I was given pred rather than anti fungals. I'm not sure why, you'd have to ask my doctor, but I think it was more the allergy that needed treating as it can cause tonnes of lovely issues.
Anyway, it took years for my IgE to down to more acceptable levels, so I had to stay on 10mg long term. At the time, it also had added bonus of helping the pleurisy I had too, which, if I remember rightly, was an absolute bitch that hurt daily. Thankfully now its not as constant, but still there. When it's bad, I have to increase my pred to 30mg for 5 days, but also go to clinic for an xray as the pain is similar to a collapsed lung - they need to rule that out to be sure.
I've wanted off pred for ages, although I think its a mixture of hating the evil tablets that leave the most disgusting taste in your mouth if you're not quick enough when you're swallowing them, and also because I don't think they're doing what they should anymore. Pred has horrible side effects, and although its hardly a bad thing that I don't get them anymore, I also don't feel the benefits (I'm so used to side effects off various stuff that when the side effects stop, I can tell the medication has stopped being useful too). The side effects ranged from various stuff like moon face (thankfully I only ever had that when I was on 20/40mg alternate days for over a year), fluid retention, insomnia, constant hunger, mood swings (cheeky shites may comment that there is no difference...), poor bone density, bruising all the time, I could go on! I've also read that it breaks muscle down, and makes all your fat deposits go to areas like your tummy, it basically does the total opposite of what dodgy gym steroids do. Whenever someone would hear I'm on steroids they'd make a hulk like joke - sadly its useless! I think I've definitley noticed that, as I think its a factor in my slower than I'd like improvement in the gym. I can be stuck on the same level for months noticing no improvement on ease or stamina, and I'm sure that's because I'm trying to gain muscle on top of a medication that wants the opposite.
So I'm stable *knocks on every piece of wood in a 3 mile distance* which means my Dr thinks its perfectly fine for me to come off it, as the original need for it has cleared up and its not really needed for anything else. Plus it'll probably be better for my bones as my last bone scan came out as -1, and for someone who trips and walks into things on a daily basis, thin bones are not on my wish list.
It took a couple of weeks of taking 5mg and 10mg per day (which evened out as 7.5mg) then 5mg every day for two weeks, before I had a test done to check my cortisone levels. That involved a blood test, an injection of synacthen, another blood test 30 mins after that, then another, an hour after the injection. Thankfully my nurse brought me a proper cup of tea, as the test had to be done first thing in the morning, before I'd taken my steroids. I woke up so early I didn't even bother eating breakfast as the earlier I wake up, the more I cough, and just feel sick instead of wanting my usual bowl of coco pops.
The test came back fine (obviously) which meant I was actually fine to stop the 5mg a day completely after getting those results! I'm still on steroid inhalers, but I need to stay on those as they help with daily things.
It's been a very long 7 and a half years or so, but I'm finally freeeee! Out of all my meds, I really hated pred the most, and that seems to be echoed in a lot of other people's views too! However, I'm not adverse to a 5day course of 30mg if it helps whatever the problem is.
So today was World mental health day. It seems a shame that so many people only feel able to speak out about mental health on one day of the...
Hemos. Nearly everyone with CF has probably been there at some point. Its just one of those 'things' that comes hand in hand with sh...
This country (or in most cases, the world), is pathetic about disabilities and those who have them. I can only speak from my own experiences...
I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this ti...