Hello! I am speaking as the long suffering wife of a GCA sufferer. One year ago, diagnosed after a stroke as a result , and impaired vision (because of the stroke and he has just tapered to 6mg prednisone on Sunday. Can I just ask please? I have now noticed that when my husband drops a level (1mg a time since 10mg) he has dreadful mood swings, it is like living w
ith Jekyll and Hyde and is as unpredictable. I ask is this a usual reaction to reducing Pred? It lasts a few days and I'm guessing it is withdrawal symptoms. Otherwise he seems fine and even has more energy these past couple of months. I can live with it if I know it is hopefully temporary!!
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Bella1310
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Perhaps a lower dose drop (1/2mg instead of 1mg drop) will result in less mood swings when he tapers.
Not sure if this is appropriate for him, but I consume cannabis and it greatly help to calm my mood. Cannabis products now come in edible format, so no need to smoke.
Of note, my emotions seemed to stabilize when I got down to about 10mg of pred, and keeping my PMR (and related inflammation) managed so that I don’t have pain/stiffness, greatly improves my mood.
I have a soft spot for all of the carers out there who help their loved ones navigate medical challenges. Hope you can find time to take care of yourself too!
Thank you PMR Canada, for your kind thoughts. Certainly at times it is a lonely road as we have no family in France, all in the UK. Friends really don't understand all of the difficulties, especially as my husband is also handicapped from the resultant stroke, with sight impairment too. They do their best and spend time with my husband and me separately, giving us a break from each other which is all important. Thanks again!!
It sounds like you have some good friends in France though.I can certainly relate to a spouse with mood swings over health issues, and arguing over the dishwasher door being open by 1cm one day and not caring the next.
I did a lot of deep breathing, not biting, and walking away to have my 'moment'
You can always vent on here. There are lots of people who will totally understand how you are feeling. Breathing..... lots of slow concentrated breathing!
Oh thank you, and you made me laugh!! I take the dog out for an extra walk when it's tough, by the time I return whatever trivial issue has disappeared and no longer an issue - frustrating eh! parking the car in certain way seems to be favourite here - since my husband can no longer drive because of sight issues, I can't even tell him to do it himself!! What a year it has been and soglad I found this site.
Ah now, let's talk about driving... with my husband who was always the passenger, putting his own imaginary break on. One day I had enough and slammed the breaks on (checking the rear view mirror of course !) And he just got out and walked home... peace in the car..🤣
Oh Lordy. how funny!!! Thank you. Getting out of our front gates is where it starts - half a mm out either side is never right and I am wound up before the journey begins. And he wonders why I am never keen to embark on a journey! Some of our trips require seeing a specialist in the city of Rennes, war is declared!
That doesn't stop me saying it - and within a short time he has usually apologised or thanked me for what I do Telling him he is turning into his mother usually has an effect too.
They are all the same - honestly. And it doesn't matter what the illness. It's their way of trying to regain some control and it drives all us intelligent women who know which way is up mad ...
You can get mood changes and mental health problems while taking pred, including: feeling depressed (even thinking about suicide) feeling high, or moods that go up and down. feeling anxious, having problems sleeping, difficulty in thinking, or being confused and losing your memory. Reducing may cause these side effects to become more obvious, so if your husband only has the problem when he reduces you should have a Dr Jeckyll most of the time. I suppose he has not thought of meditation?
Thanks piglette, in fact I could probably say my husband suffers from most of the symptoms on your list, but I 'm sure he isn't suicidal. Certainly sleeping is a big issue, and there is a cross over for memory loss and confusion from the effects of his stroke, it's a minefield. He also has diabetes and cataracts from the Pred, and sleep apnoea which the docs think was the root of all problems as untreated for likely several years. He has a lot to deal with, but I do admire his strength of character and determination to make each day better for both of us. Regarding meditation, we both try to get off to sleep with calming music or audiobooks, which works sometimes. It isn't proper meditation but a start. Thank you!!
Have to admit I was a bit like that on lower doses with my reductions - although not quite as bad - just crabby rather than Hyde-like! Always equated it to similar to PMT! irritable and clumsy! A slower taper - see attached may help - stops the steroid withdrawal effect - whicjh is probably what it is!
As he is getting lower, there is less Pred sloshing around, so even a small drop is really noticeable - on GCA high doses tapers are easy….not so when you get below 10mg. As I’ve said many times took me as long (timewise) to get from 10mg to zero as it did to get from 80mg to 10mg.
As already suggested, reducing by 0.5mg may help as well.
Incidentally, he can’t help being like Mr Hyde…it’s not intentional, although it may be difficult for you.
Thanks everyone, I did suspect... Mr Hyde is probably rather harsh, it's not that bad but when it coincides with my own frustrations I find it all hard to manage. However given there is light at the end of the tunnel I can deal with it. We have an appointment with Rheumy on 2nd September so I will ask her. It may be that she plans to drop in 0.5 stages at that point. She has so far been extremely good to us and I can call anytime. I don't like to do that unless it is serious, it was just once when I misread her handwriting on the prescription and my husband dropped from 9 to 5mg instead of 9 to 8. He then had to go back up to 12, which set him back from an otherwise fairly seamless transition, and she apologised profusely. In fact I even asked our Pharmacist who came up with same dose drop!! I was not armed with the right information for tapering - then I found you!! So thanks very much for your help to everyone.
Would you be able to talk to the Rheumy when you go for your appointment about his mood changes in front of him. I did this with the doctor once as by then I had totally had it and didn't care if he didn't speak to me afterwards. He actually looked at the doctor and agreed with everything I said. To say I nearly fell off my chair is an understatement..... but I was glad I had said it.
Yes I will try that, a third party works wonders sometimes. We had a few friends round last week and he threw a wobbly because he thought I hadn't answered a question someone asked. I had, (deep breath), and slowly and gently told him so - if nothing else our friends saw just how hard our life can be. I generally find that because my husband looks well, they think all is fine and hunky dory, when in fact it isn't at all. In one year, with this illness which has changed both our lives incredibly, and with the Covid and Brexit situations (English and live in France) I really do wonder how we have survived, but we have - so long as things continue to go in the right direction...... the things that keep me awake at night such as reversal and more strokes etc. iare another story. Thanks for listening!!
Oh tell me about it!!!!! They don't see him turning into a replica of his mother - although when I told his cousin he was turning into a cross between her father and his mother she looked horrified, then very sympathetic! Someone who nowadays would be diagnosed with Aspergers isn't easy anyway - but they don't age well!!
Ah, yes, I have two cousins that most definitely would have had that diagnosis had it been around. And one of them was a consultant anaesthetist! Just as well he chose that path with his non existent bedside manner 😂
Well he spent most of his career in Australia as a flying doctor, so I suspect they just thought he was a rather strange Englishman!I've only come across one really good anaesthetist who listened to me and acted accordingly which was brilliant and a success. All the others would say 'that won't happen with me' and of course it did! Wish I knew what it was she actually did do!
I think you’re coping remarkably well! We had a ‘situation’ on holiday. Weather was dreadful, heavy rain and we were stuck in our motorhome. HIS turn to get the supper and he didn’t bother I got hold of his ear and said which is it going to be...supper or A&E...he wisely chose supper!!! I’m evil when I get the poly menstrual tension, quite evil! You’ve got do much to deal with, plus living in a different country from your birth. I’m sorry he’s been so ill, it must have spoilt your dreams of a romantic retirement in France. Hugs to you, S x
Well we had a good few years - 12 to be exact so it didn't spoil too much. Things change anyway, our grandchildren have grown up whereas we spent some stonking summers here with them on holiday, we got older and slower anyway, and Covid and Brexit have coloured it all too. But we are still in our romantic farmhouse which got fully renovated before the trouble started, it's not all bad!!
I’m glad about that! Be grateful for small mercies I guess!! I love old properties, we are in our fifth one now. Last one was grade II listed but this one is only Victorian, nearly new!! Glad you too followed your dream! S x
I don't think it is a "usual" reaction but perfectly to be expected. However - if it helps I was like that with PMR alone and not a sniff of pred!!
As already suggested you might try to persuade him to do 1/2mg at a time and even add in a "slowed taper" which tends to soften the body's reaction to the change in dose. And can you persuade the GP to allow him to slow down a bit now adrenal function needs to reestablish itself? Longer between drops and a tapered drop might make the mood swings less dramatic - worth a try at least.
I too am a lone carer, in Italy, with family all in the UK. Not usually a problem but Covid has really put the mockers on visits as you know. It can be hard - hugs.
Yes, yes and yes Bella. I am absolutely vicious and it seems so justified at the time. I apologise for all of us, we can be vile to live with. That doesn’t mean that we shouldn’t attempt to control our behaviour, we need to be pulled up about it. It is not ourselves and it does pass. This disease feels horrible. Sorry! 🙁
Thank you Jane, so encouraging to hear from other sufferers. My husband knows what he is like, and tries hard not to be. It is bearable for both of us so long as we can see it will improve. When we see Rheumy on 2nd Sept we will discuss o.5 tapers.
So sorry for him and for you. This happened to me when dropping half mg monthly until I got to 5mg. I warned my husband so he could be understanding of my moods. He had to be extra kind and patient poor thing as I was very snappy. After 5 days I had adjusted and was back to my sunny self. Amazingly since reaching 5mg I can drop more easily and remain even tempered. Now I've finished with all my house guests, the fatigue has gone too. I've just dropped to 2.5mg and stay on each dose for 8 weeks.
Oh yes! It’s dreadful and I hate it. Even though I prepare my OH for it it’s still makes for a totally miserable and irritating time. It’s like pre menstrual tension come back in my 60’s! I hate the change but I seem unable to resolve it. Just hoping that when I’m off pred it will be ok again. Currently on 3 one day 3.5 the next etc but due to drop to 2.5 next week. Also think it’s caused by lack of sleep and current enforced lifestyle due to Covid too! Good luck, you’re doing a great job! Hugs, S x
I have been going slowly and Mrs Nails helped by advising me to go down by 0.5 instead of 1mg each time. But it’s been 18 months since I started pmr and I put on a lot of weight and just hoped I could go a bit faster. I realise my body just isn’t ready for it! It’s very happy on 5mg but I just want to see if it will accept a little lower dosage!! I had no great problems until I was below 5mg! If used to put up with a bit of trouble pmt and pain for a week then it all settled happily and I thought it would do that below 5 too! I realise there’s adrenal issues too! Thanks, you just can’t help some stubborn people, that’s the trouble!! S x
Have you tried cutting carbs? I have lost 4kg since the begnning of Lent - it can be done even when on pred. MrsNails also lost a lot of weight and we were/are both on well over 10mg
Thanks! I lost a stone on keto no carbs diet but it went back on! Then lost a stone on 5:2 diet and it stayed off OK. Even when I stopped for two weeks. Now about to attack the next stone still 5:2 but going to read up the Fast 800 diet, same guy, different numbers! S x
If the 5:2 works well for you, sticking with it may be better long term - because you can't go hack to previous eating habits once you find what works for you to lose. Just adjust upwards until you stop losing and maintain the weight you want
I think so. I was only interested in the fast 800 as some people on this site had tried it! But the 5:2 is best imho as it allows you to have normal days and treats!! S x
Yes I have done 5:2 for about 8 years with great success, maintaining for about 6 years. Sometimes the weight creeps up if I am not careful but it always comes off. I tried keto for a while, and agree, although a spectacular result, the weight didn't stay off and I couldn't maintain the diet, too difficult!!
Yes, it was complex too as my husband wasn’t on the diet so always seemed to be making two different meals etc. 5:2 we can eat the same thing and add potatoes for him for example. Interesting that your weight loss with keto didn’t stay off, too. I have a friend who got to her perfect weight ( I have four stone to lose) and she now does 6:1 and finds she maintains same weight even if she strays into the path of cakes and ice cream etc!!
Mood swings part and parcel of my experience of GCA and steroids. Now down to 4mg just over a year into GCA. Mood deteriorates each time I drop 1mg and generally don't improve as I get used to new regime. Not felt right since I was diagnosed. Other issue is tiredenes. Still dropping off to sleep during the day and lacking energy. Used to walk around 4 miles every two or three days. Now lucky if I walk two miles twice a week.
having had GCA myself would say - you have reduced much too quickly which may account for why you have felt rubbish all the way through....that is unusual with GCA alone.
Why haven't you asked for help before? That's why we are here.
Maybe now you should consider a slower tapering plan - as linked, although there are others - this should stop the steroid withdrawal issues you have been having -
I've been taking Pred since Dec 2019 and my moods are dreadful (my poor husband). One day I can feel fine the next a wave comes over me and feel dreadful, very low and irritable moods. I'm not usually a misery guts, but am now LOL. Roll on the day I'm off these awful tablets and find my moods are better, my hair gets thicker, my nails improve, my weight reduces, the list goes on and on. Try and be patient with your husband. I tell mine to just ignore me as it's nothing personal.
Thank you Staplehurst, yes - that is my husband!!!! In fact he knows he is referred to - to his sons as the Old Git!! He often apologises as he knows what he is like sometimes, but it isn't all of the time. My husband has many health issues thanks to CA and Pred and has 6 specialists looking after him, so I have to make huge allowances. I think the worst for him is that he can no longer drive the car so I have to and he loved driving and his main hobby was photography. His eyesight problems caused by the stroke caused by GCA are slowly being addressed, but he feels his retirement has been ruined. It is unknown if his eyesight will improve enough, we can only hope - surgery is happening in September to the right eye and then next year they will address the double vision in the left eye. It is a very long road, but travelling it together which I keep telling him!! Thanks for listening!
You're more than welcome...trouble shared and all that. My husband has health issue too. Type 1 diabetic sine 1998...didn't take care of himself and now paying the price. He is now 75 and also no longer allowed to drive. Plays golf when he feels up to it, as he now has Chronic Kidney Disease. I had GCA come on too after PMR was diagnosed...fortunately, no lasting side affects from that as was caught early. I only have the sight in one eye due to another illness back in 1994, so am aware what GCA can do to our eyes, which concerns me greatly. But we can't go through life worrying 'what if' as my hubby constantly tells me, which is true. I feel we've lost almost two years out of our lives due to Covid and that's sad as we age, can't waste the years now. Take care and also look after yourself X
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Telling him he is turning into his mother usually has an effect too. 
Swings and roundabouts 
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