Again prednisone taper , adrenal insufficiency , and psychological problems

[Iwillwin123]

I am at 7/8 mg prednisone while slowly tapering from 80 mg since 1 year using DSNS method. I had narrated in a previous post about my psychological issues as perceived by my spouse. However she also says that I mask these while interacting with others and these issues are displayed only in the home environment. I do not know what to believe. May I request anyone here to narrate their own ( or those of their near ones ) experiences about what they experienced at this level of prednisone in terms of psychological disturbances. I mean I now understand from the wonderful people here ,that I may be experiencing adrenal insufficiency and that could be the cause of this problem . My spouse says she feels traumatised by all this and is close to break-point ! Also what I need to know from personal experiences is how long did this psychological disturbed phase ( if at all ?? ) continue or last ?

[PMRpro Ambassador]

Perhaps a place to start would be with your GP?

However, what you describe fits with what I experience from my husband who has been ill for some time with the long term consequences of conditions he suffered some years ago. He is in denial about some things and very resentful of others - there is no evidence of acceptance of "this is where we are, how can we make the best of it?" and that all expresses itself towards me but far less so towards his healthcare professionals. In that sense it is not pred to blame but the situation as a whole and getting to a stage of acceptance is an important step.

Talking to others in similar situations has helped me because they tell me this is a common pattern in (especially) men who become ill, both in the acute and the chronic situation. I don't know how to address this for you except to say you should seek help from your GP, looking for suggestions for access to counselling to help you come to terms with the situation and adjust your expectations,

Your wife is on the receiving end because you feel safe to act like this with her - but I have no doubt that for her, like me, it wears a bit thin at times! Please tell her I'm thinking of her.

[Blearyeyed]

The trouble with the question is that it has a lot of options.

The real or perceived change in your behaviour may be a side effect of the stage of your Treatment , but equally it may not.

When we discussed this issue on another post , we discussed things like mood swings and psychosis that you had not noticed yourself.

These drug or medically induced things we discussed happen as a side effect of Steroids for some people , but begin early in your treatment , at higher doses.

We either notice we are doing them and amend our coping mechanisms early on , or they are severe and will have made a difference to your Medical needs a lot sooner.

At 7/8 mg , after a year of medication and tapering, the mental health side effects are more often related to Fatigue , like Depression , Tired Emotions , Anxiety. These things from an Adrenal or Psychological Cause aren't as easy to mask in one group and not another without us knowing that we are doing it.

Many of us " put on a social face " while we go through our whole illness. It's part of the reason we quite often cancel social events because we know we are just too tired that day to put our masks on. The family we live with , or are Carers , are often the only people who truly see how bad we feel Mentally and Physically. Although , it is possible for us not to recognise that we are switching our masks for some time we don't usually not recognise it at all.

Some people don't realize that they have behaved like this from the beginning of their illness though.

They can work so hard maintaining the " Social Face " in front of others from the beginning that they are more tired , prone to snappy words , or impatience , when they take the mask off at home and don't realize what a burden that change around can be on their Nearest and Dearest.

These mood swings can be worse , in part, because , although you want to disguise the Truth from others , and pretend You haven't changed a bit , you also feel angry or frustrated subconsciously afterwards because you felt you had to keep up the act , or your close friends didn't do more to help and understand you. This can also impact on our Close ones because they are the ones that see how you feel and it upsets them .

There is also the possibility that our OH is struggling too and that changes in mood that they were able to cope , or they protected us from knowing about , from the beginning of our illness , are becoming too hard for them to cope with now. Our OH can hide a lot of feelings about our Illness , and , how their Anxiety and Tiredness and our symptoms or behaviour can affect them. Eventually this action of protecting our feelings can make them break too , the ' Carer Mask' finally slips down and reveals a person whom needs Caring for.

Both masks are common , both worn equally by Men and Women , there isn't a Gender that copes better with these things , some just wear the masks longer than others before the Truth is shown. This is why we often recommend Positive Honesty from the start of our illness between Us and those closest to Us to help us , but also to help our Family and Carers cope too.

Advice . No matter what cause has brought you to this situation , Medical Physical , or , Behavioural and Mental. You both need to discuss it with a Doctor to discover what is actually happening.

You both may need help to cope with these symptoms and the Negative Stress you are being put through.

I would suggest booking a double appointment with the Surgery to see the GP together and both talk through your different feelings on this situation.

If it's part of the PMR Medicinal journey they may have some solutions to offer. If your OH also needs some help she can get some then too.

Otherwise , the Doctor will be able to help you get referred for some CBT training and some Couples Counselling with Mental Services to help you both learn strategies to cope with this situation.

Finally , it might be a good idea for you both to find a local Support Group , not necessarily just for PMR/ GCA if there isn't one close by , but for Chronic Illness or Chronic Pain and a group for Carers Support for your wife.

A place in public where you can drop your " Social Face " , speak to people going through the same , together or at separate meetings , and get some practical tips but also local support .

Good luck with it and take care both of you .

[PMRpro Ambassador in reply to Blearyeyed]

As usual, Bee puts it so much better than I do when it comes to chronic illness. Thanks

[Blearyeyed in reply to PMRpro]

Thank you , but No . You are the Teacher here , I am just one of your grateful pupils.

Without you I wouldn't have the answers .xxx

[PMRpro Ambassador in reply to Blearyeyed]

Not in this context!! You have been walking this walk for a very long time!

[Blearyeyed in reply to PMRpro]

Thanks again , that kind of you , big hugs all round I think xxx😘

[Longtimer]

I tend to think females will discuss more with friends etc, my husband thank goodness is never ill.....if I try to say how bad I feel (like the pain at present)...no response, he can`t deal with it....so I don`t really bother too much....the only thing my husband has experienced years ago was a disc problem, he got angry like it was someone`s fault.....so maybe because your wife is there with you the frustration is taken out on her....but she doesn't have the answers.....I bet she wish she did...….

[DorsetLady PMRGCAuk volunteer]

Hi,

I don’t know whether you’ve read this, but it’s aimed at friends and family as well as patients.

healthunlocked.com/pmrgcauk...

If your wife understood the effects of the illness a little better it might help her - and as said in another reply it’s very easy to put a social face on when with others, but your wife sees the real you.

[Purplecrow in reply to DorsetLady]

DL, sending you hugs and chocolate treats. Hope your surgery has gone well, and your recovery is swift..💜💜💜

[Iwillwin123]

I want to say a big Thankyou to all who responded and TIA to those who may yet find time to respond to me. The curious thing here as much as I can see ,is that the low doses of prednisone, are not supposed to do what is happening to me. Yet this again takes me back to the weird erectile dysfunction I had experienced for a short time ,when there was no clear explanation as to why it happened and then also why it disappeared after a month.........Well I intend to do my best to ride over this rough patch. And the superb people here are just so encouraging that I get inspired every time I am here ,to fight better.