Anyone experienced taking the steroid prednisalone?

I have used this drug twice and each time reduced the dose until I was off them. They sort out the problem but I dread taking them so much, from the first tablet I felt disconnected from my body, jittery, depressed and couldn’t sleep. I know in the future when I have another flare up I will be on them again. It took me about six weeks after being off them before I started to feel ok.

There are several unpleasant side effects including, oddly, impulsiveness and disturbed sleep.
I could put up with that, the side effects I experience are far more serious and I wouldn't wish them on anyone. Hence my reluctance to take them this morning.
The only bonus was I could do the work of ten teachers and never feel tired. I drove my colleagues mad!

I have been on and off them since December 1977, newly wed and a patient in ICU. They may be the devil's work, but they saved my life.
In those days, the long term side efects weren't well documented and I was on extremely large doses for months at a time.
I'm paying the price now, .... but thankfully, I am still here to tell the tale.

I was prescribed these steroids for a rare auto immune illness some years ago.
The horrible moonface goes quite quickly once the tapering process finished.
Calcium supplements should be prescribed to avoid bone problems down the line.
There are several unpleasant side effects including, oddly, impulsiveness and disturbed sleep. Which is why I was up at the crack of dawn once, blithely ordering £100 of unnecessary items from Lakeland before breakfast!
Pros: I’m alive. Unexpected bonuses: hair never seemed to need washing and no ear wax!
n.b the drugs are the same - known as Preds in the US - brand names for steroids.

I found that when I started reducing the dose, my moon face disappeared. I was also very flushed.

Today I had to break open my Rescue pack of steroids and antibiotics. My GP agreed that I should hang fire with steroids, for a few days due to the horrendous side effects I experience. I have enough going on!

Mazgg I’m back again and as you might remember not a lover of prednisone my moon face developed quite quickly but weirdly I did not realise it When I did notice it a friend said I had been like it for a while When down to 2.5 mg think was back to normal.
Off the stuff now for very nearly two years and I think my adrenal gland just about back to normal 🤞. Strangely no one now seems surprised it has taken so long
Hope everything goes well for you.

An update, I was told by my consultant to go back up to 40mg which I did and I am now starting to reduce the dose and going on to an immunosuppressant, Mycophenolate.
To my horror I now have 'moonface' and a thick neck. I didn't think it would develop so quickly. Has anyone experience of this and how long did it take after stopping to revert to their usual face shape.

My side effects were because I was on very high doses for years and what I suffered was exceptional. I have had serious sides effects from many medications, including a heart attack. However, for many of us prednisolone has been a life saver. You have to weigh up the benefits and risks.
I am a delicate wee flower, not everyone is like me! .

Many people are fine and it would be plain daft not to take it, if you need it, on the basis of what you have read on an anonymous forum.

Can anyone explain the difference between Prednisone and Prednisolone. My dermatologist has given me a prescription for 'Prednisone' but my chemist has said they can't process the prescription because it was discontinued in 2019. I'm sure my dermatologist meant to write 'Prednisolone' but I have to wait for her to alter the prescription. I'm not liking the sound of all the side effects.

Gwyllt, I didn't think anyone was criticising you, nor did I think you were venting your anger. Your post was honest, just as mine was.
Everyone reacts to medication in different ways, but you never know until you try it.

I have had low dose Prednisole a few times for asthma and my only side effects were good - an increased appetite and feeling generally well and less tired than normal.

If someone asks for an opinion are you surprised to give it through rose coloured spectacles
Do you think they would value such

Grandmamaoftwo
I don’t know if you have been in a similar position to myself but I think you misunderstand what I was on about
The experience I had was horrendous and there are alternative drugs available. Equally with side effects and goodness knows how I would have reacted
I am well aware drug therapy can have side effect. We are all aware of some cancer treatments and the recovery time
I could have included far more but chose not to ramble on endlessly and be seen as a winger
I felt that if the mental health issues had been explained it would have been easier to cope with.
Particularly in the adrenal gland recovery stage I felt guilty as there were times I was incapable of doing much and felt people might think I was playing on it perhaps it could be compared to Chronic fatigue syndrome
Cancer sufferers have vital support from people like the macmillan nurses. Such support would have helped tremendously
I chose to write with the aim of possibly helping others who experienced nasty side effects. To say there is light at the end of the tunnel and it’s not their fault
Not as you suggested to vent my anger
Anger only hurts the person who is angry

Marydoll

*Gwyllt*:^The unfortunate thing patients are not told of possible side effect. I know I felt my problems were all in my mind and I should pull myself together.^

I remember my mother, DH and an emergency doctor telling me to pull myself together. I was almost suicidal at one point.
Then I saw my respiratory consultant, who realised what was going on. I wept tears of relief in his consulting room. I thought I was going mad.

An example of how bad I was is, that one night DH came home from work, made some comment about his meal, which was mince and potatoes. To my everlasting shame, I picked up his plate and poured it over his head!
Thank God, I got help in time.

I agree, the side effects are not always known until you start taking them. But such a life saving drug.

Referring them to the “Devils Tic Tac”. And the anger that you experienced as “Roidrage”, is about right.

I am so grateful for all the helpful replies. My G,P has prescribed a strong antihistamine to help me sleep and this is working to a degree. I feel terribly bloated from about 6pm onwards with horrible flatulence for which I was given peppermint capsules.
I am due to take my last dose on Christmas Day .

Mum took prednisolone for while starting with a high dose which made her “as high as a kite” then reducing over a period to a long term 5mg.
It’s role is to suppress the immune system to counter an auto immune condition, because of that it makes you much more susceptible to infections. Transplant patients often have to take it long term to counter rejection of organs, apart from infections there are other long term problems associated with prednisone

Gwyllt:^The unfortunate thing patients are not told of possible side effect. I know I felt my problems were all in my mind and I should pull myself together.^

I remember my mother, DH and an emergency doctor telling me to pull myself together. I was almost suicidal at one point.
Then I saw my respiratory consultant, who realised what was going on. I wept tears of relief in his consulting room. I thought I was going mad.

An example of how bad I was is, that one night DH came home from work, made some comment about his meal, which was mince and potatoes. To my everlasting shame, I picked up his plate and poured it over his head!
Thank God, I got help in time.

I have been taking Prednisolone now for four and a half years as it is the only drug which deals effectively with polymyalgia rheumatica. It worked like a miracle as soon as I was diagnosed and prescribed and I was very lucky to have a GP who carefully advised me of “side effects” and how to reduce the dosage very slowly to avoid flares. I am currently on 1.5mg daily and am self-weaning very slowly, have never had a flare and my goal is to eventually get to zero Prednisolone but in the case of PMR there is no way of knowing. I also get brilliant advice and input from PMRGCAUK, which has been a godsend. The excruciating pain of PMR meant that I had no choice but to get on with it but I am very grateful that such a drug was available, as I have lived a reasonably normal life while taking it and dealing with the side effects as and when they appeared.

Prednisolone
Glad some have had positive experience
But in my mind it’s like selling you soul to the devil
I was on high dose prednisolone for vasculitis in February 2021 two hip replacements had to be postponed
Turned out to be isolated aortitis which dissected in April and repaired in June
Anyway developed muscle myopathy which is apparently quite common
Come august started to get depressed could sob for hours on end Gp and husband pursued me to try anti depressants
Anxiety set in and was given something for that
Bad dreams and restless legs followed
Couldn’t walk it off due to hips the myopathy had meant I was on crutches
Came of lot
Continued to reduce prednisolone very slowly thought that would sort me out
Not totally taken on board effect of prednisolone on adrenal gland and how it causes it to atrophy
2-6 weekly one article said the 2-8 I was patient GP said 3-4 months then changed to up to 6 months
So tale goes on the main problem was bouts of fatigue and to lesser extent tearfulness
One article said it can take 1-3 years and a retired anaesthetist friend looked at me blankly and said of course it can take a long time to recover why do you think so many people never get off them
The unfortunate thing patients are not told of possible side effect. I know I felt my problems were all in my mind and I should pull myself together
Nearly two years now off the stuff and feel really fantastic got two new hips and can walk five miles
Eyes teeth bone seem to have escaped side effects
The devil can now take a jump and I’ve got my life back

i was it after a broken bone it mad e sick like doing speed stopped i after2 days
its in my eye meds for post surgery soon to stop

I take a course of Prednisalone when I get an Asthma flare up. I start to feel better after three days. The only side effect I get is loads of energy, I can’t stop cleaning the house, or tidying up around the house,, it’s a strange feeling when I don’t even feel well enough. It really boosts my energy levels.

Because I am immunocompromised, due injecting biologics for RA and other RA meds, my consultants are very reluctant to prescribe oral steroids nowadays, unless in an emergency.
I do have a rescue pack of steroids and antibiotics, but if I do have to use them, I have to contact my GP immediately..

I had no idea I had RA, because high doses of oral steroids and in injection form for brittle asthma were masking it for over fifteen years. I used to be in excrutiating pain, whenever I came off them. It was my wonderful respiratory consultant, who decided to investigate why I was in so much pain.
In my late thirties, a dexa scan should I had the hip of an eighty year old woman.
However on the occasions I do take them, my pain levels decrease so much.

I call them the work of the devil, in fact I would tackle the devil himself, when I am on them. However, they did save my life, when I was in ICU at 22 years old.

My DH takes steroids regularly and has to increase to 40mg when he has an exacerbation. I describe him as ‘brittle’ or on a bad day ‘hypomanic’ when he's on high doses. Like MD’s colleagues, I dread it but it has to be done. Luckily biologic therapy has helped to reduce the amount of times he needs high doses. Unfortunately prolonged use of prednisolone has stopped his adrenal cortex making cortisol when needed so he remains on a maintenance dose and has to adjust his dose if he has an infection, stress etc.
He also developed osteoporosis.
BUT I agree with MD, steroids have been essential.

I’m glad that you have been able to talk to people who understand. It took me years to get people to understand what prednisolone could do to my husband.

I often have to take prednisone at a similar dose due to lung and other autoimmune issues- sometimes for many months. I would not be here without pred! The main issue for me is the insomnia.- which does improve over time. It’s supposed to be best to take the whole dose early on waking I presume to reduce the insomnia. I also find my appetite increases- I even enjoy hospital food! I have not found a way around the insomnia but avoiding all caffeine might help a bit. I’m never quite sure if avoiding caffeine helped - or I just adapted!
The other issue for me is the tendency to overdo it- so be careful to pace yourself.

Personally for me 8 weeks would be to quick to come right off, but then I’ve been on them 16 years, ring your dr and tell him your side effects

Been on continuous steriods 16 years prednisolone and other steriods you should have been told to come down very slowly if you taper too fast then you will get side effects the key is very slow, I’m not saying you won’t be free of side effects but take it very slowly