Why am I so tired?

[Reddev]

PMR and GCA for four years. Now taking 3 mgs of prednisolone. About 7pm I feel so very weary and exhausted. The only consolation is it’s nearly bedtime. If I’ve been doing some housework I also get very tired and have to have a break to replenish my energy. This has only happened since I’ve been reducing my pred over tha last two or three months. Looking for some helpful thoughts from the knowledgeable people on this wonderful sight. Thank you in advance.

[SnazzyD]

Hello, it’s likely that your adrenal glands haven’t yet adjusted to the Pred you’ve taken away. Pred is the artificial form of the natural cortisol that the glands produce. So far you’ve been taking plenty of the artificial sort so the glands have been on holiday. Getting started again can take time and all you can do is take it easy (important) and wait from them to catch up. In the meantime it can make one feel exhausted for no good reason, emotional, shakey and sometimes a bit fluey. Do have a read of these FAQ’s because your best defence is knowing all about the function of these very important little bits of tissue

healthunlocked.com/pmrgcauk...

[Reddev in reply to SnazzyD]

Have read through some of the articles. Will read the rest later thank you for your help.

[DorsetLady PMRGCAuk volunteer]

SnazzyD just beat me to it!

[Reddev in reply to DorsetLady]

Thank you.

[Kendrew]

Agree with Snazzy. I'm currently on 5mg and from 6½mg down have become fatigued much quicker than previously. Need more frequent rests and by teatime my batteries are running on empty! In order to help assist my adrenals back into a functional mode, I rest when I need to, pace myself carefully and really listen to my body.

It's so important to manage this stage mindfully and with an adequate level of understanding.

[Reddev in reply to Kendrew]

Thank you for your reply. Looks like I’ll need to just listen to my body and rest when I need to. It’s just not in my nature but the exhaustion does make it impossible for me to go on without a rest.

[HeronNS in reply to Reddev]

I have actually had to taper past the "fatigue level" twice. Once several years ago, and then a second time last year after a major flare. It was much easier the second time, and a morning cortisol test showed my cortisol production was normal the second time. This test was not done the first time. But the first time I went through a stage at about 4 mg when I lterally would feel I was walking through water I would become so exhausted. I don't remember when this changed, but I kept on with the DSNS taper, half a mg every six weeks at that point, and was able to continue tapering fairly uneventfully to about 2 mg, although I have been pretty much stuck there for several years, with a few ups and downs. I still have to pace myself, but I'm now in my mid-70s so I guess that's fair enough, PMR or not!

This is by way of encouraging you that if you remain steadfast, but pace yourself and taper very slowly, this too shall pass!

[Reddev in reply to HeronNS]

Thank you. Helps a lot to know that there is an answer to it all. I have been tapering by 1/2 mg each month. And pleased to be slowly getting there.

[Kendrew in reply to Reddev]

Exactly.Unfortunately, this is not a situation that you can try to 'push through'. If you do, there will definitely be consequences!

[Reddev in reply to Kendrew]

Thank you all the information really helps.

[jinasc]

Ask your GP to arrange a short cortisol test or a synacthen test. This will see if your adrenal glands are working and getting up to speed. It can and does take up to a year for those glands to become fully functional.

My Consultant arranged for the Synacthen test to be done once I was done to 5mg. It was working but just not up to speed.

In the meantime, treat yourself, as another patient said "like a precious princess" and don't push through the tiredness. Even if I was peeling potatoes, I stopped and had a short nap and just took my time.

[Reddev in reply to jinasc]

I think I will try and get a cortisol test done. It would be wise to know if my adrenal glands are waking up. Not that I want any one to be like me but it’s nice to know that a simple thing like ironing can make me so tired and I assume others as well. Thank you all for your replies. It helps.

[piglette]

I was totally knocked out by the adrenal glands trying to wake up when I got to about 5mg. A real Sleeping Beauty! It does get better but very slowly in my case.

[Noosat]

Agree with all the posts I have read. I have to rest often during the day, go o bed at 7p.m., light off at 8 get up at 5a.m. It has never got any better, so I adjust my daily activities as little as they are.. I am on 4mg of prednisone

[jls93]

Me too , first experience 2009 did not have any " reference / context" for how I felt. took about 3 years. Currently going through another period/relapse since 2018. What you are describing stinks but is not unusual from my experience. Hope this helps

[Reddev in reply to jls93]

Thank you it does help to know others experience this. But seriously it’s does stink.

[jls93]

Yup....