Anyone experienced taking the steroid prednisalone?

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.

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.

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

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 .

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.

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

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

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.

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.

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.

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.

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.

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.

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!

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.

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 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.