Feeling weak first thing in the morning.

[Judy211]

Hi everyone. I’m GCA and now down to 5mg Pred ( been at 5mg for the last month)....18 months since diagnosis. I feel pretty good most of the time but the last week or so I’ve been feeling weak when I get up in the morning. It doesn’t last...10 minutes or so at its worst and then I just feel a bit slow for the next hour, say....but it’s a new one for me! I then gobble down my huge bowl of porridge with lots of good things in it, swallow my Pred and then on I go and I seem fine. I’m assuming the weakness is low cortisol and a sign that my adrenals aren’t doing their job properly yet?Would it be wise to get a Synacthen test, do you think?

[SnazzyD]

I guess it could be low cortisol or low blood sugar, both of which you are treating with Pred and breakfast. I’m on 5mg having dallied briefly with 4.5mg on odd days but it made me feel terrible the next day. My worst times are first thing in the morning and at the end of my Pred 24 hours. I take my coated Pred at 5pm. My GP booked a Synacthen test a few months ago as a matter of course and I had that last week. So, I’m waiting for the results before I continue. However, I presume that a normal result will only give me a snapshot in time and not necessarily a guide to my adrenals working all the time effectively. At least I’ll know if the lights are on. When I had the test they were pleased to know that I’d been on 4.5mg for two days prior as they said it was better then 5mg for their purposes.

[Judy211 in reply to SnazzyD]

Thanks for this, Snazzy. Its just good to know that other people are experiencing the same things! I’ll mention the Synacthen test to my GP when I next see him. Onwards and upwards!

[Mrs-CJ in reply to SnazzyD]

Thank u for mentioning what they told u about dose. 👍

I’ve been on the wait list for 4 months to see a specialist to get a synacthen test. Meanwhile I’ve been experimenting with my dose. I’m trying to hold at 4 mgs prednisone but I do feel better at 4 1/2.....and have wondered if I should try 5. Now I think not, and I’ll try to stay at 4.....except if there is a time when I know I will be extra busy (which luckily isn’t too often).

[PMRpro Ambassador]

As Snazzy says - could be low blood sugar or even low BP until you get up and get moving. I'd hang around at 5mg for a bit longer - one very good PMR doctor likes patients to stick at 5mg for up to 9 months (though he will negotiate shorter times!) and finds that makes the rest of the journey smoother. If it continues it might be worth asking - though all a synacthen test does at this stage is show if your adrenal glands are CAPABLE of producing cortisol and not whether they are doing so properly.

[Judy211 in reply to PMRpro]

Ah, could well be low blood pressure, hadnt thought of that. Also been on Rivaroxaban for the last 4 weeks for AFib which might also be playing a part. I’m definitely not reducing from 5mg for the next couple of months or so.

[PMRpro Ambassador in reply to Judy211]

Are you still having AFib episodes? Though you may not actually notice them. When I've had a bad AFib day - I feel rubbish next day and often find the hardest part of the day getting out of bed...

[Judy211 in reply to PMRpro]

Yes, still having AFib episodes...they dont last long ( rarely longer than 20 mins) but are fairly frequent. I’m not on any other meds for rhythm, just the anti coagulants. Like I wrote a few days ago, they have only re -surfaced now I’m down to 5mg. Makes me wonder how much effect low cortisol has on sinus rhythm.

[PMRpro Ambassador in reply to Judy211]

I don't think it is necessarily low cortisol - mine happens at 8mg and is worse at 7mg. I think it may be vasculitis/inflammation triggering it.

[Judy211 in reply to PMRpro]

If only we knew!!

[DorsetLady PMRGCAuk volunteer]

No surprise -PMRpro has said exactly what I would have suggested.

You seem to have had a fairly quick ride so far, so staying at 5mg will do you no harm at all. Plus you say you "feel weak" which doesn't sound like the deathly fatigue that we talk about on here when referring to adrenals not working.

Give 5mg a bit longer and then if no improvement obviously reconsider, but personally don't think its necessary at the moment.

[Judy211 in reply to DorsetLady]

Thanks DL...I’ve been very lucky with the fatigue thing and only felt that ‘deathly fatigue’ a handful of times throughout. I’m going to stick with the 5mg and just monitor for now...good advice!

[whisperit]

I was on 4mg pred for 10 months, waiting for my adrenals to pick up again. However, I grew increasingly fatigued until I was waking early in the morning feeling so weak and tired that I could barely raise my head from the pillow. On top of that, I felt very nauseous and sweaty. BP on its own isn't necessarily very helpful as low BP is also a sign of adrenal insufficiency - yet mine was not low. It was only after I had sent off for a home saliva testing kit - which showed my waking cortisol level to be undetectable - that I managed to persuade my rheumy to refer me for a synacthen test. This showed secondary adrenal insufficiency.

But I would tend to echo other advice here. First, that temporary fatigue on waking isn't necessarily very significant; your adrenals may still be adjusting. But secondly that it's worth keeping an eye on. x

[PMRpro Ambassador in reply to whisperit]

No - I can accept stable fatigue. Steadily worsening fatigue is a sign of trouble and must be investigated, preferably by an endocrinologist.

[Mrs-CJ in reply to whisperit]

Are u on a stable dose of prednisone for your adrenal insufficiency.......or has your doctor given you a plan to see if your adrenals can get operating better? I’m always looking for ideas to help my sluggish adrenals. 😊

[whisperit in reply to Mrs-CJ]

Unfortunately, the endo who saw me for the synacthen test discharged me before I had even had the results! So all I got was a copy of the GP letter with the diagnosis and advice to 'consider increasing his daily pred dose from 4 to 5 mg'. I was not a happy bunny. As ill-luck would have it, my adrenal insufficiency diagnosis coincided with my rather rapidly developing polymyositis symptoms. So I'm now on 25mg methyl prednisolone to try to curb that - which kind of makes any adrenal insufficiency concerns a bit redundant!

I'm sure you will have seen a lot of ideas on the internet about diets and supplements that claim to support/improve adrenal function, but I'm not sure any have good research evidence behind them (with some obvious exceptions like making sure you get enough Vitamin D). You might like to check out the Addison's Disease Support Group site, which does have some useful resources x

[Mrs-CJ in reply to whisperit]

I’m sorry to hear you have had to increase your pred to deal with another issue. This PMR journey is so frustrating, especially when there isn’t a clear “finish line”!

I’ve spent a lot of time online looking for adrenal insufficiency “treatments” and there really isn’t much. The thing mentioned the most often is a switch to hydrocortisone. I’ll take another look at the Addison’s sight you mentioned. Thanks!

There is a lot of info online about adrenal fatigue but other than looking at diet suggestions, I tend to discount most of the info. AF doesn’t seem to be recognized by the medical professsion. However, since I’m struggling with sluggish adrenals the AF symptoms sure fit how I’m feeling. I wonder if the AF is a result of the high stress environment we are living in.....and everyone just needs to take a big step back, evaluate their lives and move into the slow lane. 😊

[Judy211]

Thank you whisperit, it’s really helpful to know your experience and I will definitely keep my guard up...my gut feeling is that my current weakness is likely due to low cortisol too. I’m just hoping my adrenals behave themselves and kick in properly. That might also help my AFib. I hope so!