downsides of pred

[Renaissance]

I'm new to this forum - was diagnosed with GCA in January and went immediately on to 60 mg prednisolone. I'm now down to 20 mg , and am feeling much better, but I have two questions about how the medication makes me feel - firstly a bit manic and 'out of it' and secondly sleeping is a real problem. Any advice?!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

Manic and “out of it” is quite usual at high doses, but should get better as you reduce. It’s just your body reacting to so much artificial cortisol rushing around your body. Bit like a toddler who’s been at the sweetie jar, chocolate cake and fizzy drink all at once!

Sleeping should also improve as you get lower. I took a mild sleeping tablet every 4th or 5th night just to try and break the cycle.

No point worrying about if, or trying the fight it. Just get into a routine of trying to calm yourself before you go to bed - no screen time! And if you wake during night maybe drink of camomile or decaf tea/coffee, read a book - not too exiting though, listen to radio. Just anything to distract you from laying there thinking “I must go to sleep” .

So long as you don’t work, you can catch up with cat naps in the day.

This might help as well -

healthunlocked.com/pmrgcauk...

[tangocharlie in reply to DorsetLady]

I'm reading a book called The sleep Book by Dr Guy Meadows. The basic premise is that us insomniacs need to stop trying to get to sleep, everything we do actually makes it worse. I'm on the chapter about ACT (Acceptance and Commitment Therapy) about how original problems ('I can't sleep') get amplified to make thiings worse. A bit like primary and secondary suffering in mindfulness. Well it's early days yet, but since I've stopped caring whether I get to sleep or not, ironically or is it lo and behold, I'm getting to sleep quicker. There was ain interesting article on Radio 4 recently that had another sleep expert who said the same thng, don't worry about sleep your body will adjust.

Here's the link (only works in the UK)

bbc.co.uk/sounds/play/p083d...]

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Fortunately I can sleep for England...always have....only had about 6 weeks when on silly amounts of Pred that I was affected.

But I imagine it must be very wearing for those who suffer.

[tangocharlie in reply to DorsetLady]

I envy people who sleep well- I've been an owl since I was a teenager, in a world designed for larks ...

[PMRpro Ambassador in reply to DorsetLady]

I can usually - but not the last few months!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Oh shame....too much going on obviously...with both of you. Do hope you get some better news - and health soon. Sleepless night don’t help either do they...I was a right grumpy bear when the kids were little and still waking for night feeds ...fortunately didn't last too long.,

[PMRpro Ambassador in reply to DorsetLady]

One night I took 20mg - and slept like a log ...

[Hidden in reply to tangocharlie]

Acceptance is the main thing for me. I would say it was about 1989 when I realise 10 yrs of shift work had messed me up sleep wise. I didn't sleep very well at all. Since 1997 sleep was a luxury and since 2002 I have been on sleeping pills. I regularly take a2 week break from them so tolerance doesn't build up too much.... That when I join the night time club. I would have no quality of life without them.

[PMRpro Ambassador]

Welcome!

They are both very typical side effects of pred - and really I can't add anything to DorsetLady's reply. It will improve over time and in the meantime you have to hold onto the fact that your sight was protected. That is quite a fast reduction - many people would have needed twice that time to get to 20mg so if it has worked you have been very fortunate.

If you ever have questions - there will be someone around to help.

[SnazzyD]

On high dose, my day lost any structure because I kept napping in between being a bit unhinged and useless. This was quite alarming considering I had been doing a demanding job 3 days earlier. Saw some lovely sunsets.

[FnF36]

I was diagnosed in November and have travelled the 40mg>60mg>50mg>40mg>30mg (current dosage) route and echo the previous comments. My initial reactions have markedly lessened although my sleep patterns continue to be unpredictable; some nights I can have unbroken sleep for two or three hour periods, other nights hardly any sleep. I find reading and radio quite helpful in returning to sleep, as is walking about but not outdoors! And our dogs like the company! Day time naps range from 30 minutes to two + hours.

As has been said, don't worry or try to fight it.

Good luck and wishing you well.

[alvertta]

I did not stop talking for three months. And I slept very little. Took 1 mg melatonin to help sleep. I was at 60 in October 2018. Now at 14. Sleep fine. Stopped talking non stop. Looking forward to 10 in a few months.

[Pippah45]

Yes I am afraid it's part for the course but it gets better as you reduce. I read recently there was a study in kiwi fruit helping sleep. Try eating two an hour before bed time. I am going to try at least it can't do any harm. Appetite increase is another baddy but try to eat low carb if you get hungry! Best of luck.

[Rugger in reply to Pippah45]

I eat one kiwi fruit most nights and I feel it's helped with my sleep, which has been poor since childhood - way before PMR and pred! Kiwis are said to contain serotonin.