10 things I wish I knew before long term use of pred -

[amberx]

(I'm a rambler, just to pre-warn and I'm currently sleep deprived and emotional after more hospital/GP visits - just wanted to get some things off my chest 🙃)

1. Insomnia will be your new best friend. You will get SO incredibly tired to the point where you have zero energy, but will you be able to get to sleep? Ha. a good nights sleep will become a distant memory.

2. Hairy. Face. Honestly, if someone would've told me I'd become the bearded woman - I'd have ran out of that door before they could even prescribe me prednisolone. It's not even like it's a full on man beard, just noticeably furry. Everywhere.

3. Your moods will be like it's that time of the month every. single. day. One minute I'm absolutely fine, the next I'm either sobbing into my cereal or getting so angry at the fact I can't find my house keys. Which brings me to number 4..

4. You might as well stick post it notes on absolutely everything because chances are you won't remember anything. My memory is like a sieve, and when I can't find something - number 3 kicks in. Usually with tears. Lots and lots of tears.

5. Moon face. I remember hearing about this and just thinking it was a slight exaggeration - but it's not. Moon face is absolutely spot on. Face on, my ears disappear and I look like a hamster storing food for the winter.

6. You will want to eat EVERYTHING. Your appetite will be like you've never been fed - every time you eat something. This, alongside the moon face and the bloating, makes you feel like you're about to just float away like the balloon you currently feel as though you resemble.

7. Your skin will go back to the teenage acne years, and they're not just little spots or pimples. Oh no, that would be far too generous - they are like craters and the scars they leave behind are just the cherry on top. My four year old could play dot to dot on my face.

8. Everything you do will be like you've had every ounce of energy squeezed from your body. The simplest things leave me with absolutely no energy. I can't play with my son like I used to because it takes absolutely everything out of me. Which again, leaves me an emotional wreck (see number 3).

9. Your skin becomes like a peach. Chances are you will bruise over nothing. I wake up with new ones every day. Skirts are a thing of the past as my legs look like they have been profusely (for less of a better word) battered.

10. This one is what I wish they'd told me more than anything - when you're on oral steroids for a long period of time your body almost becomes reliant on those tiny little tablets. And then when you stop taking them, your body freaks out and chances are you will need them again. And again. And again. Until you just have to accept that maybe you're destined to be a round, hungry, spotty, bruised, furry, emotional wreck with the memory of an 85 year old.

These are just my own personal points from what I have experienced with long term pred use. I'm not saying everybody experiences any of these or that this is what will happen to those who are taking steroids - this is just what I wish my doctors would have told me beforehand so that I could've prepared myself a little more for what was to come.

My life has changed dramatically due to taking 40mg a day for a long period of time. I'm no longer comfortable with a lot of things I was beforehand - I am extremely self conscious of my face and my skin - of the horrendous bruising and the ridiculous bloating. No - they don't cure anything, they don't take anything away and they don't stop the ache in my heart from reliving what I've been through the last year and for what's yet to come for me. But amongst all these things, I am grateful because of these, I can be a mum. I can wake up at home with my son instead of a hospital bed, I can take him to pre school and I can kiss him goodnight. And that's all that matters to me.

It'd be nice to hear if anyone else has similar side effects from long term pred use or if there is anything I haven't experienced?

[Minushabens]

I can relate to plenty of that! Even my consultant, who prescribed the stuff, told me I had a moon face last week. My really big problem at the moment is swelling. I have really bad swelling around my face, stomach, feet & legs & struggle badly to get dressed some days. He has reduced me from 10/day to 7.5/day but as yet I'm not seeing any real change.

I've also started to bruise really easily (which might be down to BP medication either)...that's really embarrassing as I look like I'm being beaten up every day.

[amberx in reply to Minushabens]

That's good to hear! the moon face is horrendous isn't it, I always get "it's not THAT bad" when I definitely know that it is. Oh I'm so sorry that's awful, I hope with the reduction you start to see some difference.

Yes the bruising makes me feel embarrassed too, I went back to the GP cos my legs were SO bad and so sensitive and painful, they sent me for more blood tests that I haven't heard back from yet so I'm guessing it's just down to steroids. I hope things get easier for you.

[WheezyAnne]

The mood swings are unpredictable, so people don't know how to approach you. My work colleagues said they didn't know how I was going to react when they came to ask me a question. Makes you withdraw, become isolated, lonely. I have had cataracts removed in both eyes and have more growing on the lenses they put in. I have Osteoporosis. My skin is paper thin. More susceptible to fungal infections. I am still here though and looking forward to seeing my sister and family for Christmas.

[amberx in reply to WheezyAnne]

Yes I get that 100%. I barely leave my house anymore but they also make me a little anxious and it's almost as though I'm afraid to go anywhere incase the worst happens but I'm working on it. I'm sorry, that musnt be easy for you but you're spot on with the positives - you are still here and that's the main thing.

how did you know you had osteoporosis? do they test for that or do you only know when you've broken a bone?

Take care ☺️

[WheezyAnne in reply to amberx]

The Consultant referred me for a bone scan every two years because I have been on and off oral, inhaled and topical steroids most of my life. It is like having an MRI. My bone density has been deteriorating.

[lakelover in reply to WheezyAnne]

I might be wrong but I don't think cataracts grow on the lens they put in after surgery. I would suggest that what you have is posterior capsule opacification. I had this & it was treated with lasers quite painlessly. The biggest problem was the 30 mile drive to the hospital.

[WheezyAnne in reply to lakelover]

Thanks for that. I am not good at the technical bits, just know that the thickening is coming back. I will try and remember.

[EmmaF91 Community Ambassador]

I wish I knew about ‘red’ pred sooner - maybe I wouldn’t have developed reflux if I’d started on the enteric coated pred earlier.

I do relate to the mood swings and forgetfulness, insomnia and fatigue, aches and pains, spots and bruises!

Luckily so far I’ve avoided the moon face (but the big belly not so much 😒).

Sorry to hear that it’s interrupting your life so much 😔, but as you say it keeps you at home with your son! X

[amberx in reply to EmmaF91]

what is red pred? I've never heard of it, I thought there was only the lovely little white ones 🙃

The many joyful things about steroids eh!

Thank you, I just never expected any of it which I don't think has helped anything but it has, and I have to be grateful for that x

[EmmaF91 Community Ambassador in reply to amberx]

‘Red’ pred is enteric coated prednsolone (similar to the outside of ibuprofen). It’s tastes like sugar/smarties, and is slightly better for your GIT/stomach.

We never expect these things but learning how to adapt is what makes us strong! Xxx

[EmmaF91 Community Ambassador in reply to EmmaF91]

Oh also the constant muscle spasms and cramps all over - I tense a muscle and it spasms 🙄. Also get an occasional blurry eye but it self resolves so I ignore ignore ignore 🙈🙉🙊

[amberx in reply to EmmaF91]

I get cramps too! Mainly in my hands, fingers, legs and feet - drives me insane 😭 if I hold a pen for too long or sometimes even if I'm brushing my teeth my fingers will cramp 🙄

I have never experienced the vision issues though (touch wood) but I already wear glasses so I doubt I'd even notice 🙈😂

Yes - ignore ignore ignore sounds like what I would do! Xxx

[shirl13]

I've was on and off pred from 1967, then in 1991 I was trying to get back to work after maternity leave and they put me on pred to stabilise me. As the weeks, months, years went by my maintenance dose went from originally wanting to get me down to 2.5mg to 20mg which I am now still taking. After 27 years I still don't like what pred has done to me on top of those you've listed I also have osteoporosis, diabetes, muscle wastage, but also as you stay I am still here and not 6 foot under and able to nag my husband and grown up sons lol. Thinking of you

[amberx in reply to shirl13]

Oh my goodness, 27 years is a long time I'm sorry you've had to endure them for so long. Is diabetes from the long term steroid use? They don't warn you about all of those long term complications do they, but you are here and that's what matters isn't it. Thank you, you too x

[shirl13 in reply to amberx]

Everything other than my asthma is from long term steroid use but it's swings and roundabouts you take the good with the bad

[omahjoa]

Hi Amber. I don't get the facial hair but when my steroids go up which they often do I get the chipmunk face and have thin skin, bruise easily and am exhausted all the time. I haven't had a break from pred since October 2016. Starting Mepolizamub next week so hoping things will improve. I eventually gave in and went on antidepressants as I could not stop crying. Apparently a side effect of pred. It has helped a bit. I also get incredibly hot all the time and an awful headache. Trouble is I can't breathe without the pred. My whole life has changed and it gets really lonely. Lets hope the mepo works. Lots of love xx

[amberx in reply to omahjoa]

hello omahjoa, it's not the nicest thing is it. Oh my gosh, has it been a high dose for all that time? and I hope mepo helps you out, I am currently having mepo injections every 4 weeks and yet to see any improvement but I've heard a lot of positive stories too. Yes, the low mood and emotional state I am constantly in is exhausting on its own - I cry at everything and have to explain that I can't help it it just happens haha. I 100% understand that, it's like having the choice between all of those side effects or the ability to actually breathe/stay out of hospital. I'm glad I'm not the only one who feels like this, I actually look forward to seeing my nurse every 4 weeks just so that I can rant and speak to someone who even remotely gets it (even if it's not through personal experience). I hope mepo works for you and that things get easier for you.. take care xx

[omahjoa in reply to amberx]

Will keep you posted xx

[Xebanks]

My heart goes out to you. I can't imagine being on steroids long term. Just came off a six day pack and literally felt like I was going to die most days. I wish there was another option, but unfortunately there isn't. Hope things will get better for you over time.

[lejaya]

I'm often on long course of pred and I get the moon face to and awful swelling of my stomach to the point my hubby's mum asked if I was pregnant!!!

I get terrible insomnia to I'm on 40mg atm and haven't really slept in about 3 days

however they keep me out of hospital 😀

lejaya

[Hidden]

I totally agree with everything you have written but would like to add the loss of eyesight which I have experienced thanks to 40mg prednisone long term prescribed use.

I developed posterior subcapsular cataracts in both eyes and have had to go privately to have the cataracts removed and new lens fitted.

The opticians and two ophthalmic surgeons all confirmed these are directly caused by long term use of high dose corticosteroids.

I’m still waiting for my long awaited treatment with Mepolizumab for severe refractory eosinophilic asthma.

Take care🌸🌺