Hi, well the steroid journey has not been without difficulties and I must say, now that I’m at 0.25mg on my taper, I wonder if anyone else has suffered from anger, rages, going off on one at the drop of a hat and in general being disposed to short fuse issues?
I have been very carefully especially initially with trying to keep stress free, my wife has not always helped in this as she can be quite volatile at times and I get triggered unfortunately.
I must say, I feel as though I have really changed, I seem to explode at the most innocuous thing and lose control and rage terribly, often when there is tension or aggression in the air from a 3rd party.
I seem to have little tolerance for reasonable discussion at these times, I thought it would ease as I tapered, but it’s as bad as ever, it takes me a while to come down.
One downside was that at 3mg, I had a flare up, possibly through family stress, but also I had a bad episode of anger, I felt as bad as I ever did the next day with PMR at its worst! Pain to the point of not being able to move and I was an emotional wreck, crying uncontrollably, that is just not me.
Anyway, I went up to 5mg and it seemed to work and I quickly tapered back within 2 weeks.
My wife is often on the end of this unfortunately, I think my marriage of 49 years is at the end now, there are other issues, but this has definitely contributed massively to it, I’m at a loss to explain it all, I’m normally well balanced and reasonable, so it is out of character, although I do have an east European heritage and those genes have not helped at times in the past.
I do know that I have changed, is it permanent, that is the question?
I am interested to see if anyone else has these issues as I have not seen any posts to that effect?
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Spazzy55
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This is a really common side effect of Steroid treatment “ roid rage”. There have been countless threads about it. Please try not to throw the baby out with the bath water, this is not you it is the steroids. I find that I can control it if I remain mindful but regularly slip up. I have explained to my long suffering husband but we still find ourselves having ridiculous arguments. I am confident this will go when I am off the steroids. It is worse when I change my dose, taper or flare. I take myself away from the family and read on the bed if I feel potentially volcanic. You are not alone. X
Ah yes - the dreaded "roid rage"! Lots of people suffer from it, especially at higher doses of pred. But I can assure you that PMR itself can cause similar effects - I had PMR for 5 years without pred and my rages then could be epic!!!
There are thousands of posts on the forum - there are probably plenty about it but they have disappeared amongst the many others. One is linked in Related Posts - but they need the right words in the titles so have probably missed many others.
I was sure that DorsetLady wrote a post about it - but I can't find it.
And this is an interesting thread though as usual here it wandered around the topic too
Oh no - almost never alone with anything here!! The NE of England charity funded a DVD about PMR and GCA effects on us, it was called "You are NOT alone" and can now be watched on YouTube via this post
Don’t think I wrote about roid rage as such -but did one about dealing with anxiety. But as you say it very often comes up in other posts - like one you have linked.
There is a link in FAQs-but not dire it would be a great deal of use -but have linked both anyway -
Actually looks as if run up to Christmas might be bit wet -himself was complaining they hadn’t had rain for 6 weeks and water for irrigationing crops was likely to be rationed -so Mother Nature has stepped it! But it’s always a bit hit and miss!
Yes - had noticed the forecast was a tad mixed!!! They can't decide here, looks like warm and wet after the weekend but it changes from one day to the next!
While there is roid rage there is also low cortisol emotional upset too. Are you familiar with adrenal function and low Pred? It can make one feel overwhelmed and I remember having a very short fuse at both ends of the Pred reducing journey as have others. I did find that it amplified what stressors were unready under the surface and counselling really helped. How do you feel in terms of energy and wellbeing on low doses now? Are you getting other seemingly unrelated symptoms?
Indeed I am feeling increasingly overwhelmed and low in mood Snazzy 🤔
I believe this may partly be as a result of tapering (now at 6mg). However I do think it’s also the other side of the coin of ‘roid rage’. In trying not to lose my cool irrationally with others, I’ve begun to realise that I turn the anger onto myself - blaming myself for being weak, exhausted, overweight, no good to anyone etc - and that process can lead to depression 😟
Thank goodness for my lovely husband and this wonderful forum xx
My roid rage was well gone by 10mg but the short fuse miseries were the absolute worst from 7-5mg but still hung about after that. I have to say though there’s nothing like chronic illness to expose psychological issues that we have carried around too. It seems like there is nowhere to run when normal life and old strategies come to a halt.
“It seems like there is nowhere to run when normal life and old strategies come to a halt.”
That’s it exactly Snazzy. My previous strategies majored around organising stuff ( can still do some of that), helping out and socialising (not so hot when fatigued).
And don't forget the time of year - short, dark days, lousy weather, all that socialising expected at this time of year, you may even have looked forward to it and had plans. My daughter is in the middle of exams and studying and in her new big house where she'd looked forward to having people round for the first time ever - not an option, snowed under with work. And even I am struggling when there are 2 days of no sun and bitter cold one after the other and it had snowed so the paths are not ideal. Different reasons but a similar result - down and no obvious ways to get out of it.
Agree 100% Pro, it’s a difficult time of year. Sorry to hear about your cold and ice - we’ve just had wind and rain, bad enough but different.
My daughter too is working and studying and as she puts it, ‘freaking out’ about getting assignments in over Xmas and New Year, when her son (aged 7) is off school too.
Both daughters have invited themselves and their children to our place for Christmas, from 23rd to 27th. I’ve been madly planning and pacing, hubby and I have got decos up, pressies wrapped, food in freezer etc. I know they’ll all help out but I just hope I can pull off seeming relaxed about it all (feels about as demanding as getting an assignment in! And I feel awful for putting it like that 🥹).
Hopefully the grandchildren will perk me up - they usually do!
All the best to you and thank you so much for all your support xx
Don't get me wrong - I far prefer the cold and ice here to the UK wind and rain!!! But we usually get lots of sun and when it isn't there it feels so different.
No. mine wouldn't come to me because of the studying - I'm not going to her for the same reason. no distractions. My grandchildren are all in their 20s - they aren't a problem!!!!
Yes I am thanks, being on 0.25 mg and having no symptoms of distress from 5mg tapering down, my Rheumy believes my Adrenals are back up and running actually, even without a test. Yes I found it both ends and in between, lol.
Everything else is fine tbh, I believe I have done remarkably well compared to how I have read others have managed on Preds, though it’s never easy anyway.
I have lost a lot of muscle and strength, possibly coinciding with Sarcopenia, but I do believe Preds also affect you, so I’m slowly upping my physicals.
I don't know - one lady a few years ago was down to a really low dose and apparently doing fine but luckily her rheumy's standard practice was to do a synacthen test - and while she was functioning really well under normal day to day conditions there was absolutely no reserve adrenal response when under stress requiring the normal spike of cortisol to deal with it. All that you are describing does suggest to me that a synacthen test and possibly referral to an endocrinologist might be a very good idea. There could after all be something else going on and rheumies are notorious for underestimating endocrinological wobbles!
I must admit, the way my Rheumy talks, it’s all formulaic and I feel as though I’ve just fallen off the end of the PMR conveyor belt, for all the interest shown in our discussion with what I’d learnt on here. Although I’d decided early doors my taper rate and times, she was ok with it , but sounded a bit pissed off about it in our meeting today!
My husband complained I'd got very irritable recently, and I said no, its him being annoying but then realised I'm being completely unreasonable at times. Now I'm really trying to let things go and not feel I have to argue about everything..... Irritability is mentioned as a common pred side effect. Ive been on it 6 months.
In short yes. Often I felt I was given little leeway from my wife, when I was facing medical and mental challenges. At first I had to be on 40mg of pred which was not pleasant and very scary. Its a different game now as it's the second one year of this shite disease and it's looking like it will be at least a year longer. However, we talk it through and I show her posts like this one, or medical articles to try a different achieve some measure of understanding. It's not been easy. At one point I reminded my wife that when we married it was supposed to be "in sickness and in health"... However, we had our 46th anniversary last week... which is longer than most. I think we'll make it. Btw as part of my drug regime I take 60mg Nortriptolyne, for nerve pain and as a side effect, mental calmness. Maybe ask your doctor about this or similar. Very best of luck with your situation.
Hi Spazzy,sorry to hear of your marriage breakdown after so many years.A sad time for both of you deep down .Sorry you get these awful feelings.Yes,I blame pred for the rollercoaster of emotions that a lot of us have,tearful,anger,depression,but if you are feeling rage,then maybe you should speak to somebody,even if it is just a good friend.I am on 5 mg now starting to reduce to 4 1/2 mg this week and I am forever in tears.Something on TV,Something I can’t do something somebody says,EVERYTHING!!Guess it is just the nature of this damn disease and its treatments,remember we are still poorly and the mental side of things is overwhelming at times.I hope you can get some help and some peace in all of this,thinking of youxxx🎁🎄🤶😜
Life is so not easy and at times relentlessly challenging and you are experiencing nasty side effects of a drug that's completely necessary which is lowering your mood and causing distress and difficulties within your relationships. Wouldn't hurt to discuss this with your doctor because I don't think you should be suffering as much as you are.
Hopefully your doctor can suggest helpful treatment because you definitely need a circuit breaker.
What a lousy situation, I really feel for you.
Be proactive otherwise nothing will change and you will remain quite miserable and you don't deserve that.
I am sorry you are dealing with the psychological effects caused by different dosages of pred. I am very familiar with these. However, I have never gotten down to the dosage you are on, so I don't know what surprises that will bring. I started on 15 mg and was then consumed with energy (I spent 3 hot days making my garage the cleanest it had ever been). I think my next phase was extreme sensitivity (empathy!), tearing up when hearing on the news about a toddler who drowned. My next phase was one of speaking my mind (some things are better off not said). The next phase was one of verbal confrontation with a sad specimen of humanity. Though it was well-deserved, it did not serve me well at the time! Although in the long run, it did -- I can now validly ignore this person, who surely feels "invisible." Next, came shingles...oh, how I hated that "visitor" attacking my body and refusing to leave for months. I was ecstatic when brighter days arrive (shingles gone).
In talking with a nurse friend, I explained that prednisone changed my personality: Energetic, extreme sensitivity, unusual assertiveness. There were "phases." certainly. The final phase was confrontation--a departure from my normal personality. Dark days followed, just like the climate at the time. Spring arrived, a time of renewed coping skills. Love and laughter and remembering that "some things are better left unsaid." 😄 Have been able to help others in my surroundings dealing with strife.
During my dark days, there were angels on this site who came to my rescue. They were generous in telling me about their dark days. They were "open," and I will never forget that. While I call them angels, they did not call themselves that!!!
I now realize I was also lacking Vitamin D! I take D with K, making sure to take it with a fatty food. It helps! I give it to my daughter as well, and she has noticed better well-being.
I've not been successful at lowering pred. Who knows what will happen when I do. I am due to start Kevzara injections.
Spazzy, don't be too hard on yourself. I'm impressed by the wonderful support and advice from other posters. People who have lived a similar journey as yours are so helpful. Good luck, Spazzy. (I love the name you chose, it makes me smile. 🙂
Did you try using the search field, this comes up quite regularly! I suffer very badly, & it nearly ended our 43 years of exceedingly happy & contented marriage. Now I have got down to 1mg & things have settled down a bit. My personality changed completely, & I don’t yet know if the old me will come back, OR if I can blame the steroids for its tbh. I have been diagnosed with 12 medical diseases over a short period of time, &m as my husband says ‘you are ill all of the time, it’s only a variation according to an individual day’! It’s a lot for any carer to put up with, & adding my irritation, impatiences & rage to it…nit a pretty picture!
Sorry to hear that you’re suffering. I’m only in my fifth week of pred so can’t comment on ‘roid rage’. I know I have become far more impatient, intolerant and judgmental during the last few years but have put that down to increasing age and the state of the world and this country, particularly since 2016. I was obsessed with the news and know my stress levels were through the roof which probably contributed hugely to my PMR. With the help of my husband I am working hard on letting that go - stressing over something I can’t change. I’m also trying to break contact with anyone who tends to rattle me - luckily my husband and immediate family don’t fall into that category.
I have to address your comment about being of eastern european heritage. Vey broad statement - pretty sure that has nothing to do with it. I have always thought that scratch the surface, we’re all the same world wide. Both my parents came from Eastern Europe. My father was the nicest, gentlest, wisest man you could meet despite fighting in two world wars and surviving being a prisoner in a Siberian camp. My mother was nothing like him - enough said - I have to get it from somewhere😉.
At low doses it is likely to be adrenal function sparking the anger, so it will improve soon.
Ok, so an autoimmune disease is something we are doing unconsciously to ourselves, so the main thing is that it is asking for some sort of change - whatever that is will depend on the individual. You feel that your personality has changed - some of this may be down to the illness and the meds but there will be underlying factors.
Illness provides an opportunity to look at our lives and where we may be unhappy or not fulfilled. We can benefit from counselling, stress management, mindfulness training or meditation, relationship counselling etc etc - the whole range of tools we can use to find out more about what is going on and identify the best solutions. If you are thinking about ending a partnership of 50 years, and you haven't done any of this already, then I think it would really help.
One of the main things is not to let unconscious forces shape our lives but to take charge. You could start by looking at the anger. Anger is a short-term biochemical event when we feel righteous and justified, but afterwards, often, ashamed. Do you know what is underlying the anger you feel beyond the stimulus of adrenals/steroids?
An effective technique for dealing with anger which just needs some commitment and practice is the following. Don't engage, take yourself out of the situation, distract yourself with activity. See if you still feel angry in an hour.
Well done for getting so low on the steroids by the way! A real achievement!
You are definitely not alone! I offered a bed to a friend in dire need a few weeks ago and it very quickly became obvious that it was a bad idea! I have never had anyone so totally un-housetrained in the house and so unaware that she was leaving drugs around to poison my beloved dog. Then she started doing stuff with pins and left them all over the place. That was it - she had to go. As it happens she has got onto the council housing list and landed on her feet but the stress wasn't good for me at all! She noticed I became ratty at before a meal - which I had told her about anyway but still insisted on turning up a couple of hours late for lunch! I am not certain roid rage is entirely to blame but really!!
Thanks yes - expected to be waited on hand and foot too! Her claim that her previous landlord was physically abusing her seemed to be a big lie. Well if he had done - why would she crash there one night last week??? Some people who say they are always truthful don't seem to understand the word!
I did say it would be next time she was late! Trouble was she was bringing lunch and I was worried because she is an appalling driver! She had one accident while here.
a bit off topic..,, aged 17 in 1979 diagnosed with Stills disease which manifests as rheumatoid disease for me with similar symptoms to PMR and Lupus. Treatment was steroids for several years but I’ve no idea of dose. I was 17, bed ridden, my Mum my carer as I could not lift a glass to take my own meds.
I’m posting to say I am aggressive, I’ve had job issues as a result and relationship issues as a result. Was this the steroids I guess I’ll never no but felt it worth commenting that I was once shy and retiring and after Stills abated in my mid 20s, I was not.
It is awful not feeling yourself! While undiagnosed in worsening pain and stiffness, and on higher doses I would excuse myself and go upstairs to be alone and spare my (new) husband my wrath. I likened it to post- partum depression where I had NO emotional regulation. But now I had both physical pain and mental distress.
Things got better as I was able to manage the PMR with medication and with support from my therapist. A good friend hugged me in my first few months with PMR and assured me that I was still me, somewhere inside. I even returned to work recently after 6 years off. My GP mentioned plenty of his patients don’t make it below 5mgs of pred because they feel so horrid going through adrenal insufficiency.
Both high and low doses of pred can cause what you are describing. You are not alone. I understand the marriage challenges…my active husband misses his fun-loving wife. I feel I’m much better now and our disagreements are not that frequent, but then again he has low tolerance for conflict overall. PMR has taken a toll on our marriage, and sadly he seems to have more trouble with accepting my PMR than I do. I tend to blame the OMR, and he focuses on the medication….which is better than blaming one another.
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