As you can see if you read my profile I have spent almost the whole of the last 4 months struggling with a long list of frightening mood changes which have and still are making my life a misery. I cannot go on any longer. I began to think I am going insane. One of the family googled "Side effects of prednisolone tablets" and an NHS site popped up and under the section titled "Mood Changes"it listed all of my symptoms! The advice was that if you have any of the symptoms listed to ring 111 immediately. I did that yesterday which didn't help much as the report from them to my GP has yet to arrive. I am due to see the Consultant on Fri after an 11 week wait for an appointment. I will tell her again about the symptoms although she ignored them when I told her at my only visit so far. I wonder if anyone has been in this situation? What do you think will happen next? Are there other options that don't involve steroids? Any help at all would be such a relief.
Severe mental reaction to prednisolone: As you can... - PMRGCAuk
Severe mental reaction to prednisolone
"Are there any solutions that don't involve steroids?"
Not in the UK I fear unless you are in the small number of patients who respond very well to methotrexate. There is one person on the forum who uses hydroxychloroquine very successfully and a couple who don't use anything with the resultant high level of symptoms.
There are a couple of biologics, Actemra and Kevzara, which are used in the USA but which are neither approved nor funded by the NHS for PMR under any circumstances.
Luckily, such severe adverse effects of pred are very unusual but we do meet it occasionally.
Thank you for replying so promptly. From the sound of it I will have to somehow get off the Prednisolone and tough it out. I really can't carry on like this. I am absolutely toxic and have upset so many people in the last months. Will see what is said at the hospital but my first thought is that as the doses of Pred get lower apparently so does the severity of the symptoms. Do you think I might be able to achieve a balance doing this?
The severity of symptoms will lessen on lower doses. I had high levels of irritability and was quite irrational and emotionally labile on higher doses. This wasn’t helped by many months of insomnia. I eventually sought help from my GP for this so things improved roughly 6-7 months after starting high doses of pred for GCA. I look back at those early days and think what a nightmare experience. I was frightened too. Get all the help you can and think that this is not you, it’s the medication.
I am so grateful to get your message. You are right is is frightening. The lack of sleep is tough. I average about 3 hours a night for the last three months! What the most difficult thing for me to cope with is the laid-back baggy person I was has turned into twitchy mean spirit witch who everyone tiptoes around. Anyway thank you again. You have given me hope which is wonderful.
The insomnia is likely to be contributing quite a bit in my experience. I get particularly cranky for about 4 hours over midday, so I'm certain is is pred dose related. It is dire. Might yr dr be persuaded to part with a low dose of Alprazolam or some other medication for you to use at night from time to time to see if that helps till your dose of Pred is lower. FWIW I have found that no tea or coffee after midday helps, as does cutting out the little alcohol I consume. Splitting the dose seemed to help with the irritabilty but not the insomnia! Grrrrr......
Many thanks for offering some excellent advice. I think you tips about tea and coffee will certainly be the way forward for me. Thanks again.
Difficult to say - part of the problem is that you need enough pred to manage each new day's top-up of the inflammation. If you are on even slightly too low a dose of pred the inflammation builds up again, like a dripping tap eventually fills a bucket unless some water is scooped out on a regular basis, and you end up back where you started.
Your best option since you are under a rheumy already is to ask to start methotrexate or leflunomide which seem to have the best record for steroid sparing and then you might be able to achieve some sort of balance. As I said before, one person on the forum does very well on hydroxychloroquine and he stopped pred very quickly after starting it. All you can do is ask to try.
Unfortunately no other options in the UK, and many powerful drugs have some pretty nasty side effects…. Hopefully you will get some answers from your contact yesterday with NHS111.
Bramble2000 suffers from Pred as well, so hopefully as I’ve tagged her she will be along with some advice for you…
I feel very sorry for you.I have suffered some terrible side effects too but my mental instability hasn't been as bad as yours.Please report it to the National Drug Association as well as your Dr.
They will only look in to things if enough people report what has happened to them.
My side effects have been life threatening so I am working on getting well and staying well.! God bless
Thanks for answering my plea for advice. As I am British I will not be contacting your US National Drug Association. Many thanks again for your kind good wishes.
Raewynne lives in Australia not US - but you can report your side effects through the yellow card system -
I, of course bow to your superior knowledge but no I won't be following your suggestion. Thank you anyway.
It was only a suggestion, and although you do need to give your details the information does remain confidential…. and it may well help others in the future.
But of course, it’s your choice, and I wouldn’t want you to think I was putting any pressure on you. I do hope you can find something that give you pain relief without the major side effects you have with Pred.
I sympathise with you, at times I thought I was going insane on pred. It has become much better now I an a lower dose.
You have given me hope for better times ahead. Thank you
Absolutely agree with Bluey-1, tinlid, who echoes my experiences. I'm on 20mg atm, and experience some pretty awful days with sudden bad temper and uncontrollable sobbing. I am due to start methotrexate shortly and hope for some improvement. The happy-go-lucky, confident, energetic me has disappeared for the time being, but I believe that was the real me, and she will return!
I’m so sorry to hear what you’re going through. I can sincerely sympathise as I was the same when on high Prednisolone. I was started on 70mg as my inflammation was so high and I was in a bad way as I got hit by both PMR & GCA whilst travelling over to the US from U.K. last Christmas. I had no idea what had hit me but it was unlike anything I’d ever had before.
By the time I got to see someone in California after I’d been discharged from the ER with “myalgia, anaemia, elevated inflammatory markers” I could barely function. Fortunately I hit lucky with a wonderful PA who diagnosed PMR but said she hoped I’d not also got GCA. Both diseases I’d never heard of. She consulted a rheumatologist who confirmed PMR and also GCA due to the excruciating headaches, eye, neck, shoulder pain I was suffering with.
She hoped I could taper off as I was only there for 6 weeks but that really backfired and the GCA returned with a vengeance. So, the Rheumatologist insisted I stayed on 70 until I could return home, mainly to keep my sight safe,
I can barely even remember some of this awful time. I certainly don’t recognise myself during it. The insomnia was terrible and the mood swings very scary, even to me. I could have killed I am sure😞 I’m a patient, placid person normally but wow, I transformed into a constantly irritable, anxious, angry person and my sense of humour was first out of the door...
As the steroids eventually reduced this thankfully improved, so I want to give you hope that you will be yourself again, but it takes time.
I got another downside as I developed steroid induced hyperglycaemia, which put me back in the ER and on insulin for the first time in my life. All in all the most terrifying time in all my 68 years on this earth and I was traumatised. I still am to some degree. I am still waiting to see a rheumatologist here after returning at the end of January which is dreadful. I did get put under the diabetic team, so I am also managing the rather tricky job of controlling my type 2 familial diabetes for which I’d never needed anything more than a tablet a day. All in all a traumatic almost 5 months of my life I hope never happens again.
Please rest assured, that as the evil but entirely necessary steroids reduce you will get yourself back - and the angry, volatile person you became will diminish.
I wish you all the very best!
Your message shows what a strong person you are. How on earth you coped with all those ghastly symptoms when you were trying to negotiate health provisions in a foreign country I don't know. Made me think it is time to put on my big girls pants and stop whining! Thank you for giving me hope of better days ahead.
Yes, I was in that situation. I started on 15 mg of pred and all was fine for the first few days. I was euphoric, but initially that was the relief of having no pain. Then during the second week, I started to lose my mind and became totally manic. I became a danger to myself and those around me (I'm not exaggerating) and I felt suicidal. At the end of that second week, one night I was particularly bad and I realised that I wasn't safe to be in the house alone, fortunately I had the presence of mind to realise that it was the meds and not me, and got myself to my friend's house a few doors away. She took one look at me and instantly took my car keys away from me and I stayed with her until I felt more calm. By coincidence, I had a doctor's appointment next day, and he reduced my dose to 10 mg and then I had to reduce to 7.5 mg after another week. In retrospect, I am not surprised that happened, as I have a paradoxical reaction to a number of meds, including most anti depressants. By a stroke of luck, I am extremely responsive to the pred and around 5-6 mg seems to be the amount I need to control my inflammation, which is just aswell, since pred is pretty well all we have for PMR. Also fortunate is that below 7.5 mg, any psych effects are manageable for me, though I do still get a bit jittery at times.
Anyway, I was pretty impressed by my doctor's handling of the situation. I was monitored very closely by the GP and received several follow up calls to check on my mental and emotional state. I am concerned by your consultant not taking this seriously. I think quite a lot of people get a bit manic in the early stages of pred and I am supposing that my reaction to it is fairly unusual, but it was taken very seriously. I would think that your GP would be the best person to help you manage this.
Thank you for replying. I think you are blessed to have a supportive GP. I like my GP very much but her advice so far has been woeful. I am currently taking 8mg so I am prepared for a rough few months whilst I gradually reduced the pred. I admitted to the doctor who I spoke to that I had considered suicide and planned it too but couldn't do it because of the family. My father did do it when I was 11 and has left me with emotional damage! Anyway, sorry to ramble on. Many thanks again I really appreciate your kindness.
I have PMR and GCA. I also have epilepsy. My reaction to steriods (only an injection fortunately) was psychotic ....complete personality change ....angry attacking my children (verbally not physically!) And hallucinations. I was given methotrexate instead which so far has worked for me. I was also given actemra for the year that is allowed in the UK and am now leading a normal active life only on methotrexate pain free. Its worth giving MTX a try good luck
The words 'normal life' jumped off the screen when I opened your post. I am so glad you are well again. Unfortunately I suspect I will not be offered methotrexate as I have a problem with my liver. Am due to hear next week if they are going to operate on my bile duct to relieve the liver. I hope they can. They have certainly thrown every scan known to man on this so fingers crossed on this. Many thanks again.
You are not alone, I’ve sobbed and got angry all at once, my husband has took all of it. I started on 20mg I’m now on 10mg I’m struggling to breathe also which respiratory are going to see me about as they don’t understand why now fluid is going. I’m hoping now I’m on 10 things might calm but I have anxiety due to a subarachnoid haemorrhage and take medication which was recently changed ( doesn’t help).
I was on higher doses in my younger years and I never got this not even weight gain but I was more active.
Take care
Wendy xx
Oh dear you do have a lot on your plate at the moment. I do hope things improve soon for you. Many thanks for taking the time to respond.
You’re welcome, it’s horrible having cormorbidities , I have too so it’s even more difficult for drs to diagnose but getting there, the Serositis is crippling, it’s easing from lungs now but terrible in stomach so it’s just a very light evening meal in fact a tuna wrap, that’s it, my stomach just bloats too quickly and becomes painful.
Good luck
Wendy xx
Yes. I had that problem. It got so bad my husband of then 40 years said he felt we should take some time apart from each other. I had the reaction from one other drug in my life,too, about ten years ago. But we talked & realised it could be the same with pred. I tried to be more aware of it, & he tried to tell me patiently when I was ‘bad’! I was able to reduce fairly quickly from 15 to 10mg (tapering, but not as slow as I would have done). I chose to endure the flare ups, without increasing, but that’s not a good thing to do! I only had 3 hours sleep for ten years due to other medical complaints & that was one of my worst problems. My doctor helped to alleviate that issue, & though it’s not fully resolved, I sleep about 5 hours now. We are back to being as happy with each other as we’ve been for 43 years! But I suffer from Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration….& it’s hard to live with that lot…as my hubby said ‘you are Sick every day’, & it’s true…there’s always something flaring, playing up, etc, & that makes life tough. You’re not alone!! S x
Your comments about your husband seemed so familiar to me. I have been brutal to him since all this started and he has wished himself a million miles away. We have been married 54 years and had 8 children but this illness has changed everything. I think your post is inspirational as you have so many health issues and you battle on. I really really wish you well and will never forget your post. Thank youx
Thanks very much. Very kind of you. I only shared it because I can see others are struggling..but I guess also to show you can battle through it all…for many years, & try & find out what’s causing some troubles & put them right. 54 years & 8 children is a great achievement., well done. Keep fighting & remember to ‘be nice’!! Your spouse is in the battle with you, not against you!! S x
I’m so sorry for how you are feeling; I’ve never had this reaction since being on pred, but I remember well the depths of despair before it. I really had to hammer this home to my rheumy and you should too. Cry if you have to - you probably will anyway - and let them know how close to breaking you are, they should be able to do something, surely. This is my second time with PMR and this time I’m taking Lefluminide as well. It has really helped me to reduce steroids quickly with no issues, so perhaps this is something you could suggest. This will be challenging for your family too - I hope they know why it is happening, please make sure they know; this is NOT your fault.
Sorry I can’t be more help, my heart goes out to you.
Good luck with your appointment xx
Thank you for posting. I will definitely ask the consultant tomorrow about Lefluminide. It is tough on the family but nobody has abandoned me yet. I wouldn't blame them if they did! You must be an expert having had PMR twice. Hope it leaves you soon, this time for good. Thank you again.
at 20 mg pred I ended up in er, out of my mind, thought I was having a stroke. One doc said I was having a panic attack, see a counselor. But another said that pred drives some people crazy, it just does. I was crazy. As I reduced, it got better, but now at 4 mg., I’m still mostly crazy but nothing like I was. 😋. I live in fear that I will develop gca and be put on higher doses because I could not tolerate them.
Same here. The thought of needing a higher dose terrifies me. I would need a straight jacket and a padded cell.
I was on 40mg pred for a short time in 2016 with Oral Lichen Planus - I collect AI conditions. Talk about insomnia and steroid rage - awful.
At Eye Casualty in June 22 when I was initially treated for GCA as an emergency the doctor produced 60mg of pred and told me to take them. I stared at the pills in horror and announced ‘the drug of the devil, I’m going to need help with this’. Can’t say I got much help but not sure what could be done. The GCA symptoms did disappear over the weekend before the US scan the day after starting treatment .
Some people on here seem to cope well on steroids. I have not been one of them. If you’re struggling you are not alone and the only help is to remind yourself, this too will pass. Any bizarre reactions are due to the medication, not you as a person. It will get better. Slowly does it. I never want to go back on those doses again. Mind you, low doses may bring their own issues once the adrenals need to get going. The deathly fatigue is another phase although it’s been there for me on and off since the start. Off for a Syncathen test tomorrow so we’ll see if the adrenals are capable of anything. What a roller coaster and we all have different experiences and reactions.
A quick update after visit to hospital. Finally saw the consultant geriatrician (that came as a bit of a shock!). I was referred to her as I needed someone to take an overview of everything going on with my health. She was very thorough and I got answers to all my questions and it was lovely to finally be heard by somebody in the flesh! The outcome is that I will get from 8mg to 5mg quicker than I intended then stop at 5mg. i think she had the results of all the scans for gallbladder stuff but did not say much as I have a telephone consultation on 2 May to hear what if anything is going to happen. One of the scans showed fluid in my uterus so a referral to the gynaecologist is being arranged.
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