Fatigue

[Xanthe12345]

I have just reduced steroids from 8mgs to 7 over 6 week span. No pains as such just extreme tiredness. I am not sure if its steroid withdrawal or the Mirtzapine I take at 10 every night! Or the heat. Would reducing to this level cause extreme fatigue. Hoping you most experienced ladies can throw some knowledge my way! (Gents as well). Thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

Most likely culprit - your adrenal glands trying to start working again - you are at that level. Just have to be patient I’m afraid.

Heat obviously doesn’t help most of us, can’t comment on other medication, no experience.

If you’ve done a slow taper it shouldn’t be steroid withdrawal, that’s why they were devised in the first place.

[Xanthe12345 in reply to DorsetLady]

Thanks for your advice and support. Will persevere!

[piglette]

I got extreme fatigue when I dropped to around 7mg which was probably the adrenal glands coming back from holiday and having to start working again. The fatigue was much worse than at higher doses for me.

[Xanthe12345 in reply to piglette]

How are you coping now?

[piglette in reply to Xanthe12345]

I had to go up to 10mg for other reasons, so the problem has gone away for the time being. It was worst at 5mg in my case.

[piglette in reply to Xanthe12345]

I should have said I just gave into it.

[SheffieldJane]

All of those factors Xanthe. Especially arriving at 7 mgs that matches the amount of Cortisol that a healthy body produces. Your body is feeling alarmed because of low Cortisol so it wants you to rest while it endeavours to wake up the Adrenal glands to start producing more. All we can do is go with it. I have found structured naps make it less obtrusive. I am also having a Synacthen Test to ensure that my body can produce its own Cortisol because I have been stuck at this stage for months. Others sail through, no bother.

[Xanthe12345 in reply to SheffieldJane]

Be so glad to feel a bit normal. Thanks for your advice

[Purplecrow]

Hi Xanthe, fatigue is one off the unpleasant side effects of this PMr/prednisone journey.

It is not a "forever" problem, but does frequently recur throught the pred taper.

Much has been written by others, take a look at the upper right side of home page for "search pmrgcauk" . Type in "fatigue" and you will be rewarded with lots of prior posts on the subject.

I discovered that I can deal with fatigue by taking a brief rest,

(15-30 minutes) lie down , or just sit and relax with a beverage for a few minutes. The episode passes, and I am ready to resume my activity.

I Hope these tips help you, PMR is quite the learning journey, as others have said,

" not life threatening, but life changing"

Kind regards, Jerri

Diagnosed PMR 2013, currently 6 mg pred.

[Christophene47]

Don't worry ; everyone who responded is correct. It will pass when your adrenals learn their long winter's nap is over, and start pumping again.

[Xanthe12345 in reply to Christophene47]

Thanks for advice and support....I will persevere at 7

[Sho-Sho]

I am more exhausted at 8mg than when I was on 50 - I find I have to rest for at least two hours after lunch and then feel better - I can feel my body really struggling when I do too much (even if by normal standards it's very little!).

So frustrating - patience!

[Xanthe12345 in reply to Sho-Sho]

Thanks....will be patient!

[Hollyseden]

My first attempt at going down to 7 wasnt very good with aches and tiredness. Doc said back to 8 stay at that for a month and try again, which I did. Definitely been better this time round. Heat getting to me but gets to everyone right! Almost at end of slow taper to 7 🤞 now trying to decide if I should go for 6.5 or 6. Anyway hopefully for you this may work.

[Xanthe12345 in reply to Hollyseden]

I got to 6mgs but had to go back to 8mgs in March. I will be more patient this time this time

[Hidden]

Hi

I’m on 7mg from 7.5mg & suddenly my legs feel like lead & l have to sit down before l fall down!

If I’m at home l like to lie on the bed & fully relax, it’s somehow better than a chair! Husband will make me a cuppa & bring me one biscuit 🍪

I’ve had a Synacthen Test & referred to an Endocrinologist but he doesn’t believe l have Secondary Insufficiency! I feel more reassured having read other people’s posts on this subject as l was beginning to think it was just me!

Mrs N

PS What time do you take your Mirtazapine?

[Xanthe12345 in reply to Hidden]

Hi mrsnails

I take 15mg of Mirtzapine at 10pm and they knock me out within the hour. They probably have a lot to do with morning fatigue.

I am going to stay at 7mgs steroids and try to work through the side effects.

How are you coping now?

[Lanakay in reply to Xanthe12345]

I take mirtazapam also. Before I started taking it I was waking up at odd hours feeling in a panic and unable to go back to sleep. It has helped me sleep.

[Xanthe12345 in reply to Lanakay]

Mirtzapam is brilliant Lanakay... pulled me out of anxiety and depression. Are you still on 7.5mgs? Just not sure if its them or steroids causing the fatigue in the mornings. Hopefully, as advised by the ever helpful ladies on this forum it is my adrenal glands. Keeping fingers crossed that they kick in soon.

[Lanakay in reply to Xanthe12345]

I replied but it looks like I replied to myself so you may have to look for it a bit. Sorry!

[Hidden in reply to Xanthe12345]

Hi

Sorry it’s taken a couple of days to reply, New Grandaughter, New House!

Have you considered taking your Mirtazapine a little earlier maybe only half an hour or so, obviously you’d need to be in bed earlier but the side effects may be less noticeable in the morning.

I was prescribed Amitriptyline for my shoulder to be taken at night & I discovered that it was better to take it earlier then l didn’t wake with that thick head feeling.

I’m feeling a bit below par but there’s so much going on with the New Grandaughter & New House.

I hate the way the fatigue can just suddenly hit you & l simply have to sit down!

We were in a well known store yesterday choosing furniture & l ended up ordering the chair l was sitting in as it was so comfortable! 💛

I’m still on 7mg, Mum & Baby are Home, so easier to see them without the restrictions of Visiting Time.

I’ll think about my next reduction in a couple of weeks, when we’re more on an even keel.

Take Care & Keep in Touch

Mrs N xx

[PMRpro Ambassador]

That is the level that is regarded as the point at which adrenal function must return. However - it does vary as some people only absorb about half of the pred they take compared to the 90% others absorb and 50% people will feel the effects sooner than 90% people!

[Joan-E-D]

Hope you eventually come through this tricky part of reducing. I tried to go down from 6 mg to 5 mg using DSNS and the pains and fatigue came back. Following advice I went up to 10 mg for 3 days and then back to 6 mg which has worked apart from a pain in my right buttock and thigh which is making walking, sitting and lying down uncomfortable. I may have pulled something or have sciatica. Sleeping is difficult in the hot weather so that might make us more tired but if I find if I rest after lunch for an hour I can manage to function. I might try 5mg again after I return from holiday, but if I have to stick at 6 mg for the time being so be it.

[Xanthe12345 in reply to Joan-E-D]

Joan I find that by lunchtime I have started to function! 2 hours later I start to fade again. Determined to get to 5 by the end of August....if PMR doesn’t have other ideas. Have a nice restful holiday.

[Joan-E-D]

I found I felt a bit like a zombie and like you it took until lunchtime to function when I took my pred. at breakfast time. Then a friend of mine, a GP, suggested taking the pred. just before I go to bed i.e. about 11.30 p.m. This means I'm at my best in the morning, which I prefer, but I'm flagging around lunchtime when I need my rest.

[Xanthe12345 in reply to Joan-E-D]

Zombie is exactly how I feel Joan. Just hoping adrenalskick in quick! Can’t take steroids in the evening as I take other meds then. Might try them earlymorning though. Thanks for suggestion