As the wife of someone with PMR (diagnosed last autumn and now at 7mg for a second time as he tapers down), is it normal for the Prednisolone to cause mood swings? I fully understand his exhaustion (I had ME many years ago) but my husband struggles with ‘being unwell’ and has become very snappy and irritable. The whole family feel as though we are walking on eggshells a lot of the time, and he takes umbrage at the mildest of comments, saying he is constantly being criticised. Is this normal with steroids?
mood swings: As the wife of someone with PMR... - PMRGCAuk
mood swings
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chrissiemac
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DorsetLadyPMRGCAuk volunteer
‘Fraid so, but so does having a chronic illness - also at his current level could be adrenal glands stuttering.
It’s difficult all round, and I’m sure in his better moments he wishes he wasn’t like it either.
Have a look at adrenals link in FAQs for your info -and if things don’t improve maybe talk to GP -know it’s not easy… but there is help out there, if required
healthunlocked.com/pmrgcauk...
Thanks. I’ll take a look at that.
I was horribly depressed and quite aggressive on higher doses of pred. I can be quite weepy just after I taper. I am still lacking in tolerance. I suspect that pred has actually uncovered some character traits that I always had but used to conceal much more carefully.
Thanks for your reply. He went through the weepy stage early on and low mood, but now just really touchy and snappy all the time.
I can avoid some of the damage that I am capable of doing because I live alone. It must be harder in a family household. I am feeling bad at the moment because the heat is effecting my joints. Perhaps he is feeling worse too?
Ask your g.p. if you can have dexamethasone fewer or no mood swings.
It is totally unsuitable for the management of PMR - what on earth suggested it to your GP?
PMRproAmbassador
Probably the pred - but my husband was the same and he was never on pred, just long term frail with many limitations. He said much the same ...
You say "at 7mg for the second time as he tapers" - if he was only diagnosed last autumn I'd say the doctor has created some of the problem by tapering the dose too quickly which presumably led to a relapse of symptoms, That can be very upsetting to many patients if they were led to believe this would be a short lived problem that was going to be "cured" by pred. Pred cured nothing - it is a management strategy that must be employed with care to have a much more steady environment which doesn't totally mess up daily life. Men usually do very well with PMR and have a relatively short journey though there are no guarantees. But too enthusiastic reduction of the dose, whether the desire is on the doctor or the patient's part, will cause relapse, leading to a yoyoing of the dose and making it increasingly difficult to reduce again, It is something to be avoided.
I can identify with the yo yo'ing. My mother suffered from it from her mid-70's until just before she died at 91. I don't think she ever felt 'right'. It's something I'm really trying to avoid although I do have concerns with regard to my ongoing treatment with the rheumatologist. This support group helps enormously, thank you.
Hi there, I have had to have my pred upped again to 15mg, I tried to go on 10mg but the pmr symptoms resurfaced again, so I think that I will be on pred long term. My family sometimes go on at me about exercise and I do try but I sometimes feel pressured as I don’t think they understand how pmr feels. Can anyone tell me what the best exercise is and how long to do it on a daily basis please. It just gets me down when family go on at me…. Thank You
If you want a selection of suggestions you need to post a new thread - this will only be seen by a very few people simply because of the way HU works, these internal chats within a thread aren't notified except to someone who is actively following the thread.
Before you do that - have a look at the FAQs because I'm sure there is something there. When you do post and have PMR and exercise in the title then you should see a selection of related posts listed once it is up, But tell the family that PMR makes muscles intolerant of exercise - you have to keep it simple and small to start and build up VERY slowly and gently. On one day you can do an amount that you don't feel next day - but overstep that and you may be suffering and unable to exercise at all for days, even weeks. For example, you start with a short walk you know you can manage - and every couple of days you add a couple of minutes to the walk, assessing on the next, rest, day. Eventually you find a walk that you find too much and you go back a step to "train" at before trying another step up. Repetitive actions are poison in PMR - the muscles must have time to recover so a low number of reps with a low or no weight is far preferable to normal gym approaches for the healthy, It is possible to do a lot of damage if you go at it like a bull in a china shop.
Not managing at 10mg early on is not a sign of longer term pred than it would be anyway - PMR lasts more than 2 years for the majority of patients. How did you get from 15 to 10mg? It is perfectly possible that even if 10mg is not enough 11mg would have been, You cannot do big steps down successfully - if you do. you may think that 10mg isn't enough and jump back to 15mg - when even 10.5 is what you need. Small steps with decent intervals works much better.
Hi there, I was put on 15mg pred as this is what I started on and it really helped, but because I went down to 10mg I have had a flare up so the doctor put me back up to 15mg. I still don’t feel too good at the moment and above my knees is very tender, is this right? or could that be something else? I really don’t understand pmr in-depth, is there something, a booklet or book I could get to help me please…. Thank You
As PMRpro said, you need to start a new thread so that others can respond to your questions. Just briefly, a 5mg drop in pred is huge. The experts on here will advise you if you start a new thread of your own and call it something like "New to PMR, advice please", and then ask your questions in the body. Go for it, so many wise, experienced people here to help.
Thank you for that, I am not very technical and unsure what to do regarding a new thread, very new to doing this, but I will have a go and thanks again 😊
You should see at the top of the page, an invitation to ask a new question. You need to exit this thread. I'm sure you will be able to do it. Xx
As said -go to top of page and tap WRITE -takes to new page -Also have a look at this link -
healthunlocked.com/pmrgcauk....
Link missing!
Not now… 😊
There is a whole load of the sort of info you are looking for in the FAQs - there is a link at the top of every thread, just below the post. These are based on personal experience and medical facts.
healthunlocked.com/pmrgcauk...
DorsetLady has written introductions to PMR and GCA for new patients
There is a book written by one of PMRGCAuk's founding members, Kate Gilbert which you can get from Amazon and also as a Kindle e-book, which is her story of surviving PMR. And of course the website for the charity
pmrgca.org.uk/information-a...
which has details of Kate's book
As mentioned by PMRpro have a look through FAQs -maybe start with this -healthunlocked.com/pmrgcauk...
read.bookcreator.com/B0azEx... is a link to a nice little booklet that's pretty spot on in describing PMR and daily life with it. Very helpful for family and friends and even doctors who just don't get it.
Buddy, One thing I have noticed is that The Well try to bully you into being what you were before. So they make loud noise about your weight gain, prod at your swollen ankles, suggest much more exercise, and hope they don’t have to do much more for you! I live alone and am more a victim of my friends than my children, although they aren’t that consistent with help either. I find I have to be insistent with doctor, when needed, and explicit when help is needed from kids. Exercise doesn’t come into it except some stretching and walking. Figure out what you can actually do, enjoy that and banish anyone who makes you feel hurt and diminished! I’ve been stuck on 7-8 mg for 18 months. Getting stabilised on 8 has helped enormously. I also take 4 paracetemol a day for aching and sciatic pain, which also seems to help with brain fog! Activity still exhausts me. I do what I can and try to be cheerful. I have just lost my husband and now a brother. I’m doing my best and if anyone insults me, I just take a chunk out of them!
yes, most definitely chrissie. It can also degenerate into shouting. It's probably part of our nature which is exacerbated by the pred. am constantly apologising. till on high dose and trying to reduce. PMR is right about fast taper making him depressed if he relapses on flare. Happened tome, weepy too. Stay with it and once the n=mood shifts to reactive don't poke a stick at it as he won't be able to stop himself reacting first. It's a trying time all round.
Both high doses and low doses made me feel up and down. Low doses can be because of sluggish adrenal function which I certainly had and you’ve already been directed there. I agree that it’s a shame the doctor thought the Pred could be reduced so quickly, potentially leading to disappointment and frustration, not to mention the physical effects of yo-yoing.
My OH is being treated with anti-depressants to help him sleep....but if course he's not depressed....oh yes he is!....finally had chat with him yesterday about being nasty/snappy, very quite etc...he said what is there to be happy about!.. ...to which I replied, that is depression!......and pointed out what there is to be happy about.....He's 77 and first time being ill!!.........
Today he's cutting hedges, so hopefully the chat helped....
I recognise that response only too well! My husband is 75 and is ‘not depressed just fed up being tired’. He can sleep at the drop of a hat but is nasty/snappy and becomes almost obsessed about things that wouldn’t normally have bothered him. When we question anything, we are all ganging up on him. Really finding it so difficult to handle.
Exactly as it is here...Idon't think they can accept their bodies letting them down.....
My son is very different, in fact the other day he said, you females get a raw deal with health, us males do have it easier.....I know what he means....DIL going through menopause, major foot problem, daughter with PMT...he lives with it
OH didn't say anything.....
yes we can but it hurts. we feel we can't hold our end of the bargain and that make us angry. we are at the cusp of control and losing it. Someone says something that doesn't sound right or seems critical and we are oversensitive. That bit is the drug. We react and often people argue back or just counter. That would normally be seen as reasonable but inthe heightened condition it's like lighting the blue touch paper. We just explode. Done it many times and apologised many times. It's horrible but you see it happening and can't stop it.
My OH is a very deep quiet person...and we are both very direct....I have had P MR for over 10 years with a very restricted lifestyle....in last two years for me no driving... I have always been independent, I haven't expected him to change his lifestyle at all in those years, only to take me to hospital.....he has been ill since February....when I point this out if pushed to.....he agrees......
This morning he went walking for an hour, cutting hedges in garden, today, me, just cooked a meal, and lying down this afternoon......he hasn't lost his independence like us physically.....not easy for any of us...we all react differently...
Yup - it was ditto here. I just got very stroppy and that made me feel rather guilty. Luckily he retreated to "his" room with his TV and 2 or 3 computers and a DVD player. Ate so little for a long time that he gave up joining me for lunch or dinner and when he did start eating towards the end he stayed in his room as it wasn't my mealtimes when he wanted to eat.
That is my husband exactly and I’m the one with PMR. Part of it I think is he hates my being ill, particularly with something he can’t understand which is rendering me incapable of doing everything I used to.
He hates you being ill...but can't imagine how awful it is for you!Sounds like my former husband. Decades of love and devotion from me but he couldn't raise a finger to help when I was ill (not with PMR).
I am delighted to say that 15 years ago I walked out (with 2 dependent children)...if I could have afforded it, I would have done so sooner. I think the younger generation male is much more empathetic. and hopefully women have greater financial independence.
Well done you, that was very brave. I’ve thought about it many times of course but the devastation for so many other people, children and particularly grandchildren would be too much for me to cope with at my age.We soldier on.
a pity but well done. ageing male who understands.
...and hopefully the exercise will help too. I find it helps tremendously when I feel a bit down.
I often think I'm not a very nice person to live. When tapering, even on a very slow schedule, my mood is low and I'm irritable on the days I'm on the new dose until I eventually get used to it.
Thanks. I always expect a reaction when he drops down 1mg but he has been on those dose for almost3 weeks.
That's a steep drop.....probably not helping with the moods.....half mg over several weeks might help.....if he thinks dropping quicker will see the back of PMR....unfortunately...no....
I think that is what he expects, and he is desperate to get off them. I’ll keep trying to mention the lower drop but he doesn’t see that his mood and behaviour is a problem so unlikely to listen.
Why is he desperate to get off them? If diagnosed and managed correctly (i.e. no quick reductions) then pred will help you. I started down this road in 2017 (20mg) and am now on 1.5 to 2mgs a day 5 years on. Life is, on the whole, good and because of my (not GP's) management I can function reasonably well at 78. I'm also disabled so maybe my expectations aren't as high as an able bodied person but I am thinking that your husband has maybe set his goals too high and, yes, there could very well be depression there. Are you able (with the help of family) to speak to his GP and ask him to call your husband in for a bit of a chat? Maybe your husband will listen to a "professional"? At least you have the backing of your whole family. Good Luck.
Remind him that if he gets off the pred before the underlying cause of the symptoms we call PMR has gone into remission then he will end up back where he started. It really isn't a case pred bad, no pred good. And yes - I know I am probably preaching to the converted and he won't listen never mind believe you. I had one of them - made caring for him very difficult.
Does he drop the 1mg at one go or taper using old dose and new dose? It's taken me 2 months to get from 5mg to 4.5mg(now alternate days 4mg and 5mg). Basically ok now though due to just having had a bout of shingles I'm not going to reduce again for another couple of months.
The GP and rheumatology consultant both said to drop 1mg at a time and then wait 4 weeks, have bloodstone and if ok drop down again.I suggested dropping 0.5 which I’d read on here, but he is determined to follow the doctors,
That is standard - trouble is, they have never done it themselves. Top experts say not more than 10% of the current dose - it is always above 10% from 9mg and rising ...
That was the initial advice from my GP and the first rheumatologist I saw but it just wasn't manageable for me. Thankfully my current rheumatologist is happy with a very, very slow taper. Hope your husband finds a taper plan that he is happy and copes with.
Hi, steroids cause quite a lot of side effects and mood swings is one of them sadly. If you have a minute you could read this free on-line short little booklet written by a lady with PMR with her own drawings. Quite amusing and it will also explain some of the problems your husband may have with PMR. He may like to look at the booklet too. read.bookcreator.com/B0azEx...
That’s a great booklet - so many similar situations! Thanks. I’ll check out some of the links she has included too
I loved the gremlins in the book. It will be interesting if your husband identifies with it.
Piglette - Many thanks for sharing that brilliant booklet. It is certainly a true but light-hearted reflection and could have been written about me and possibly many of the members of this forum. Talk about being depressed - the booklet has cheered me up no end. A problem shared is a problem halved.
He may need a distraction of some sort. Don't know if he is able to get out and about at all? I'm not an easy person to get along with, never mind PMR/pred, but have always found getting outdoors, especially into a fairly calm area like a garden or park, especially where there are trees, now that I think about it, can really uplift my mood. It can be hard to start a new activity when depressed or feeling unwell but possibly my inadvertent pandemic coping mechanism will give him some ideas. For 2020 I'd made a list of new year's resolutions, activities to do every day, as I was having problems adjusting to life in my new home. Turned out to be a real lifesaver when pandemic lockdown hit. They included things I've always liked doing, like playing the piano or drawing, but also language learning through Duoling, tai chi every day (had to stop when hurt knees but back at it again), reading aloud to myself.... and a few other things. I think there were seven items at the beginning, but now that my 30+ year needlepoint (tapestry) project is completed, and in the hands of the framer, there are 6.
The benefit may not even be the accomplishment of a goal, just the fact that if I feel at a loose end I can think, oh, right, I have to do my Duolingo, or whatever task comes to mind, and somehow that focuses my mind on something pleasant which also gives me a feeling of purpose, although I don't really know why it's so helpful to me.
Thanks, he isn’t the best at amusing himself although he potters in the garden when he isn’t too tired. He used to go to the gym 3 times per week and is a stickler for routine so finds that frustrating. I’ll certainly have a think about some othe4 distractions for him, but as you say it can be difficult to start something when you feel depressed or down.
If he is a stickler for routine a little timetable of activities might work, if he can get started. New Year was a good time for me, but maybe find a date much sooer, some sort of anniversary, holiday, birthday, whatever works, and begin then. I am now well over 1200 consecutive days of doing Duolingo! I'll never get good at any other language, but lately, getting bored with Italian and Spanish (as well as the requisite, because I'm anglo-Canadian, French) I started to dabble in Portuguese, Dutch and Scottish Gaelic. Maybe there is something similar your husband can try in a field which interests him but which he isn't already expert in?
Depression - especially when reducing the dose - is listed as a side effect on the product information leaflet that comes with the Pred. Mood swings also listed as fairly common. And about another 100 side effects too.
I am afraid so. I experience it myself. I do try to control snapping but it feels so justified at the time. My poor husband bears the brunt so I do have an element of control. Your husband might benefit from realising that steroids are causing this and the world is not conspiring to drive him crazy. I try counting to 10 before I utter or leave the room. A little rest can help. We tend to be sleep deprived.
This sounds familiar.
I was very moody at higher doses of pred. Seemed like I couldn’t regulate my emotions. The smallest comments could generate bad feelings for me…I just felt quite sensitive and misunderstood at the core of it all.
I responded by going upstairs to my bedroom or to the front livingroom where my smart tv is. I knew I wasn’t feeling myself so didn’t want to be around others. This lead to isolation though at times as I felt it was the sacrifice I was making to keep the peace with my husband and stepdad. My hubby came to learn that it was best to leave me go off if I felt it was best “for us”.
What helped me (and may help him), was talking to my therapist. It felt great to vent about my pent up frustrations. I could rant and rail without restriction and worry about judgement. I also talked through possible ways to cope when my emotions were getting the best of me. Going for a walk or exercising in the pool provided a great distraction and helped with sleep. This in turn resulted in a more even keel with regard to my moods. Lastly I consumed sativa dominant cannabis strains that also greatly served to calm/stabilize my mood (but I realize it is not for everyone).
Wishing you all the best with navigating a delicate situation. I have a special place in my heart for all the partners/family of PMR/GCA patients (and those contending with the negative fallout of chronic illness/pain). It is difficult for families AND the patient!
I had that effect with NO pred and just PMR - and you are so right about having a non-judgemental talking partner ...
I too was not myself for the 6 months I had PMR symptoms prior to diagnosis and not yet on pred. The increasing, ongoing chronic pain caused me to be miserable. Adding in 20mg of pred resolved most of the pain promptly, but also resulted in emotional dysregulation (mood swings), that actually felt like l did while having postpartum depression. Thankfully this decreased the lower I dropped my pred dose.
Interesting to read this Chrissiemac, as have been feeling very sensitive and more easily irritated on 7mg, not to mention a massive flood of tears when I felt misunderstood. Have got over this a bit now I realise what's causing it. Those d....... steroids again ! Have now cheered myself up with lots of lovely books and projects for painting in the garden with my neighbour. She has been battling with vertigo so we can moan about things together.
I so understand how you OH feels chrissiemac. I am in the same position and now down to 6/5.5 just where I was a year ago. Sometimes I am fine and happy but then can become angry and upset at the slightest thing which then make me feel I have no self worth and dissolve into horrendous sessions of sobbing. Luckily I have a wonderful husband who loves and supports and comforts me. Take care and stay safe.
I sympathise. My husband would have argued with me over a paper bag or the dishwasher being a 1/4" open when he was ill. I went to the doctor with him once and just said it like it was, the doctor looked at him as if to ask his thoughts on what I said, and he nodded and said that is exactly what he was doing. Unfortunately the antidepressants gave him awful hallucinations and so he refused to take them....But it did mean I could pull him up on things after that at least before he retreated into the spare room.
I wonder if showing him this thread might help him to realise.
Poor you as hard to live with. I was really horrible to my poor long suffering husband when on high doses when dropping. I pre warned him I'd be impossible for 5 days after a drop. Once under 5mg it became easier with no mood swings. He will come out of it eventually.
Thanks for all these comments as they’re really helpful. I want to help and support him as much as possible - we all do - and I know he doesn’t realise how snappy he is. He IS desperate to get off the tablets as he has never really needed medication for anything serious, and I did say a lot of the issues when we saw the rheumatologist. He said he is keen to get him under 5mg and then sees no need to push down further if it’s difficult. I think my husband heard someone say at the beginning when diagnosed that it would burn itself out and could be over a year, and that’s stuck in his head (as a lot of things do these days and become almost obsessive). He is due to talk to the GP in 2 weeks (telephone only due to COVID rules!) and if he doesn’t improve by then I will try to speak to him, too. I think showing him these replies would be good and was one of the reasons I was keen to ask you all for your thoughts. It’s been a great help, and I can share the comments with our family who are all a little unsure of how to help.
Tbh it's no good being desperate to be off steroids. Pmr won't be hurried. We all have to accept that and then it's an attitide of mind. Once it's under proper control with small drops say every 4 weeks, one starts to feel better and can increase activities very slowly. He probably needs some talking therapy which would help him come to terms with it, but you'd need to go privately, as nhs waiting list is too long. Good luck.
why doesn't he come on and share/? get him to PM me and I'll happily chat with him about anything under the sun if that will help. I totally understand and also never took PILL in my life before.
let's not be too indulgent here...he hasn't lost total control and he hasn't lost the facility to apologise. I am so sorry you are going through this but you need to make it quite clear when his behavior is unacceptable...be sympathetic and then walk out the room.
You’re right, and I do call him out on it. Until this last couple of weeks he accepted that and apologised, but now he is getting more annoyed when we tell him and says he feels we are ganging up on him. Even a difference of opinion on simple issues gets the reaction that he is always in the wrong when it’s just that we don’t agree with him. We are trying to do as you say and simply walk away.
I have developed a certain look, that when he starts, he knows how he is being and eases up or stops.....just like a naughty child really!....not funny but mostly works now....
almost word for word said that.
Hi ,unfortunately that is my case very moody ,road rage and cry as I don’t like been like that.I cannot explain why I can ask m6 O H a question and in ten mins as again he says i have dementia and using pred as a excuse, but I cannot get to see a proper GP at my surgery.
Only telephone calls with different GP who don’t know anything of my medical history.
I know it’s hard on you and your family , I don’t think the pandemic has helped me.
I wish you well
Hi chrissiemac, Having been through some of the irrational, angry, weepy emotions caused by Prednisolone myself I can sympathise with your husband. He can’t help how he is feeling and most likely hates it. I’ve shouted and raged at my husband or had periods when I’ve just wanted to cry all the time. Sometimes I’ve just wanted a hug from him when it was probably the last thing on his mind. On my better days I look back and feel really bad for how I’ve treated him. On the other hand I feel for you too. It must be so hard living with someone and not knowing what kind of day they are having or how they are feeling. I’m getting better at recognising when I’m going to have a bad day. I called them my ‘Rottweiler’ days and warn him in advance. (apologies to dog lovers!) It seems to be working. We just give each other more space. I do hope things improve for you both 😘
Ilike that "rottweiler days". Not day for me though but unpredictable moments. We are both very strong willed and also literate so it's often stupidly about semantics or a wrong word to describe something or how to do something specific. I must be a bit aspergers because taking exception to a term is silly really but dissolving the weld on a gate by hitting it with a club hammer to straighten the bend from her driving the quad into it was a wrong use of vocabulary. Telling me not to hit it because of that wound me up.
Oh yes yes and more yes. From 10mg to 7 (haven’t managed to get any further down yet) I look ok back and wonder “who was that person?”. I was definitely suffering with steroid psychosis. Everyone around was suffering me. I feel like I’ve come out of it but a flare can knock me back. When I was tapering the next half milligram my family used to say “batten down the hatches and hide the biscuits. It wasn’t funny at the time but I can joke about it now. Hope it gets better for your other half.
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