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Anyone experienced taking the steroid prednisalone?

(42 Posts)
Mazgg Wed 15-Nov-23 11:35:31

The hospital dermatologist prescribed this for an autoimmune condition called Morphoea which affects the skin.
The initial dose was 40mg for 2 weeks, reducing gradually over an eight week period. I am experiencing side effects as detailed in the leaflet. Insomnia, anxiety etc. I feel so jittery, weak and wobbly that I wish I had said no when he gave me the choice. Of course at that time I didn't know how bad it would be. I have come down to 30mg from today and wondered if anyone has experienced this and how long it lasts. I have to tell dentists etc. about it for a year after finishing the course.

nanaK54 Wed 15-Nov-23 11:43:38

I'm sorry to read this.
My DH has to take them with regularity, but is fortunate to not suffer too many side effects.
It might be worth contacting your GP to ask if you can 'come down' more quickly.
Wishing you well flowers

crazyH Wed 15-Nov-23 11:47:54

Mazgg - I have had them a few years ago , during an exacerbation of my asthma. I never read the side-effects, because I will be imagining all sorts of symptoms. It sorted my acute episode and I have not needed another course since. I take my regular inhalers etc, of course. No one will take any medication if they read all the side effects.
Of course, speak to your GP if you are experiencing any troubling symproms. Good luck !

Blossoming Wed 15-Nov-23 11:52:45

Hello Mazgg I had to take this after contracting the immensely nasty Stevens Johnson Syndrome. This is an auto immune disease and can be fatal if left unchecked. Fortunately it was in the very early stages and the treatment worked. I lost most of the skin off my fingers and hands and had to wear protective gloves. It didn’t spread very far luckily

As you will have been told it suppresses the immune system and I could not go out apart from hospital visits for monitoring , including frequent blood tests.

I was told to take it first thing in the morning to reduce the risk of insomnia. I’m not sure if I really had any side effects as I was already feeling so unwell. By the time I’d finished the tablets I felt much better. I was told to ring the dermatologist if I had any bad symptoms, I can’t remember which ones now.

If it is affecting you badly I would speak to Dermatology and seek advice. Perhaps a lower dose might be appropriate for you.

joannapiano Wed 15-Nov-23 12:03:53

I have no trouble taking Prednisolone to alleviate my asthma at times. I have a lot of allergies and am reluctant to take many drugs, but am always fine with this particular one.

Franbern Thu 16-Nov-23 08:37:11

Back in the 1980's I was taking this drug in very large doses for most of that decade to try to control ulcerative Colitus,. Alsio having steroid enemas. Ended up having a full Ileostomy.

I was so unwell during that decade that I have no idea if I suffered any side effects from the drug. However, I am pretty sure (and Doctors tend to agree) that my Osteoporosis now is probably due to my long term use of steroids.

harrigran Thu 16-Nov-23 08:49:06

DH was taking it while having palliative chemotherapy, he had just about every side effect listed. It can be quite brutal as long term it can lead to Osteoporosis.

glammanana Thu 16-Nov-23 08:55:55

I have just finished a 2 x week course of these steroids and found them to make me very jittery and unstable.
I was being treated for Covid/Pheumonia and in hospital for 7 days the nights where scary as I had really black dreams,I would prefer never to take again .

Georgesgran Thu 16-Nov-23 08:58:08

Both my DF and DH took this - neither experienced any side effects and the benefits were very noticeable. However, it’s important to stick to the instructions and reduce the dosage properly.

Mazgg Thu 16-Nov-23 10:01:07

Thank you all for your replies. I was prescribed calcium and vitamin D3 to run along side to overcome the added risk of osteoporosis.

Marydoll Thu 16-Nov-23 10:13:26

I have been on and off them for nearly forty seven years for lungs problems. They saved my life when I was twenty two and newly married.
However, I developed osteoporosis in my thirties, due to the high long term dosage.
They did cause several problems, but the benefits outweighed the risk.

HowVeryDareYou2 Thu 16-Nov-23 10:14:08

I took Prednisolone for Vasculitis (an autoimmune condition), earlier this year. I had a course of 13 weeks. 10 a day for 4 weeks, then reduced by 1 a week for the remaining weeks.

I'd never felt so strange - after 3 weeks, I had the typical steroid "moon face*, then shakiness, a feeling of being detached from reality (spaced-out), huge increase in appetite, puffy fingers and feet, nausea, and just about every side-effect there is. The Neurologist told me I had to take them and finish the course, which I did. When I saw him recently, he apologised for the way the tablets had affected me, and agreed that I'll never willingly take them again.

maddyone Thu 16-Nov-23 10:20:50

I’ve taken Prednisone twice recently to help control the asthma flare up I’m suffering from at the moment. It has improved my symptoms but certainly not made me symptom free even after two courses. I often take a short course to help with asthma symptoms. I also took high doses of steroids when I was hospitalised with Covid, and also twenty years ago when I was hospitalised with Clostridium Difficile. I don’t really have any side effect except some disturbed sleep.

annodomini Thu 16-Nov-23 11:12:11

I took prednisolone, starting on 20mg and gradually decreasing - for six years when I had polymyalgia rheumatica. I had no ill effects except for the 'moon face' for a year. In fact, I was positively euphoric when the drug took immediate effect. But that was me and this is about you. 40mg is a big starting dose and maybe as you reduce it, the side effects will also reduce, though I hope you have made your GP or your dermatologist aware of these symptoms.

Marydoll Thu 16-Nov-23 11:33:48

40mg is a normal dose for me. I used to have a moon face and flushed cheeks. My colleagues dreaded when I was on it, I resembled the Duracell bunny.
However, long term use affected my mood and I was at one point psychotic and it also exacerbated my post natal depression. Much to my regret, I couldn't breastfeed because I was taking it.
It wasn't a pleasant episode in my life, but I would have died without it.
On a lighter note, a GP friend asked if I was back on steroids, as I was rather bloated. I was actually pregnant! 🤣

HowVeryDareYou2 Thu 16-Nov-23 11:44:49

I should have added that my starting dose, for 4 weeks, was 50mg daily. I've taken lower doses, for 1 or 2 weeks at the most, for Asthma, and never had a problem then.

Marydoll Thu 16-Nov-23 14:46:35

Mazgg, remember steroids affect your immune system
You will need to be very careful of viruses.

HeavenLeigh Thu 16-Nov-23 17:28:54

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

HeavenLeigh Thu 16-Nov-23 17:31:17

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

Margiknot Thu 16-Nov-23 20:09:40

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.

Ali23 Thu 16-Nov-23 21:36:33

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.

Marydoll Thu 16-Nov-23 22:10:32

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.

Lilypops Thu 16-Nov-23 22:44:34

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.

dotpocka Thu 16-Nov-23 23:11:47

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

Gwyllt Fri 17-Nov-23 07:50:11

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