irritability, and tapering change

[Excelsior80]

I've been taking pred since June, standard plan of 15mg for 3 weeks, 12.5 for 3 weeks, 10 for 6 weeks and then reduce by 1mg every 6 weeks if all ok and its all going well so far, I feel very lucky compared to many here. The onset was very quick, from wondering whether I overdid it digging the garden to shuffling round slowly and unable to raise arms or turn over to get out of bed, or get out of a bath, over a month or so, and quick diagnosis and start of treatment, immediate full response to pred and so far no GCA symptoms. When I went back to GP after starting pred she said the way I walked in was so different!

Recently my husband said youve been a lot more irritable since you retired (in July) And I said hmm because I see more of him probably .... and then my sister said you do realise you are being completely unreasonable? And I read the pred side effects leaflet and irritability was a common side effect So Im being careful not to snap at people 🫢

The only effect so far of lowering a dose by 1 mg was I felt very tired for a few days going from 9 to 8 so I thought i could do 3 weeks at 8, 3 at 7 1/2, instead of 6 at 8 from now on. I mean, down 1/2 every 3 weeks instead of 1 every 6 weeks, does that seem ok?

[Excelsior80]

probably minor issue but very very keen not to rock the boat since all going well so far!

[DorsetLady PMRGCAuk volunteer]

I found when on Pred for GCA on higher doses [and therefore steps down 10mg/5mg a time] my steroid withdrawal [SW] symptoms were irritability and clumsiness [almost like PMT symptoms of olden days!]

One of the reasons why the slower tapers we bang on about are useful... they not only make the actual taper easier but also seem to calm the SW symptoms.

Our suggestions are here - but do what suits you -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Excelsior80 in reply to DorsetLady]

really interesting, so annoying when so many symptoms can mean various different things. I thought 8 to 7 over 6 weeks but via dropping to 7.5 half way is similar to what GP said but less sudden....but maybe i would need to stretch it out more 🤔

[PMRpro Ambassador]

I'd say smaller steps and longer between them. At present your body is in a constant state of flux, it doesn't have time to calm down between changes in dose. That alone can make you irritable.

Retirement and adding pred probably accounts for being totally unreasonable!! It is a BIG change and hard to adjust to. Are they retired too?

[Excelsior80]

yes ... he retired a couple of years ago but i was still working. I was happy with the 6 weeks at each dose as seemed fine, but the 1mg drop was difficult last time...is 3 weeks not enough to notice problems ? Adrenal usually immediate, not enough pred effects bit later ? I was sad today to find out my lovely young GP in training has moved on so I just made a face to face appointment next month with random other GP for follow up after 6 months on pred so I guess I need to persuade her of any major change .... thought id ask for blood tests and dexa scan too.

[PMRpro Ambassador in reply to Excelsior80]

Three weeks is a bit borderline.

It is a big difference that - he retired to an empty house and no-one around while you continued your normal lifestyle away from home. That is easy. What is difficult is when suddenly you are both in each other's hair all day every day and lose the privacy that you had before. I worked from home as a freelance translator. It was bad enough evenings and weekends but when he retired there was no escape. When I wasn't translating, I had been doing pretty much what I liked, when I liked, how I liked during the day. And suddenly I was scrutinised and asked where, what, when, how. And it drove me nuts!!

[Excelsior80 in reply to PMRpro]

very true!

[Rugger]

Many of us reduce by only 0.5mg / month and then only if we feel able to do so. It's advisable to reduce by no more than 10% of your dose at each step down, so that below 10mg, 0.5mg is better. The dead slow tapers also help - DL has given you the links.

The irritability and emotional changes should get less as you reduce the pred dose. 🤞

I can empathise with the loss of your "lovely" GP - my "lovely" GP upped and went to live in Australia - but at least I saw him for 7 years after my diagnosis. 🌻

PMR: 2016

GCA- LVV: 2019

[Birder21]

My manager has noticed I am more irritable than usual so blamed the steroids! I have been following DLs 5 week taper by 0.5 since I got down to 9mg. Looking forward to retirement but got another 3 years to go 😕

[random901]

Hi Excelsior80! I was initially very irritable (and clumsy and weepy) on starting dose of 40 pred. Much better when got to 15. But I do tend to shout and fly off the handle for the first week of every new taper (currently on 13, reducing by 1 mg per month). Dog and neighbours in this terraced house have got used to it - very tolerant and understanding!