Is my extreme fatigue and dropping off to sleep when travelling a little PMR or...

[Jan_Noack]

Hi all,

I'm wondering if my fatigue(extreme), I cant travelin a car or train without drifting off to a kinda sleep, cant watch TV.. sleep long hours at night but can only saty awake a few hours a day.. exhaustion and such a relief to lie down.. I can't describe it. Its been ongoing for overa year now and worsening. anything knocks me. I am now on about 2 to 2.5 mg pred and have been for about 6 months. I'm alternating..I'm also (by accident as the doc write the scrip for prednisolone) alternative between prednisone and prednisolone (but as far as I can find out there is not a lot of diff and prednisolone may help me get off quicker as maybe faster metabolising in body ?

I've been on prednisone starting at 12.5mg by a rheumy after one day at 25mg and another at about 20mg, then 15mg (I thought I had to taper over a couple of weeks until I saw him). I had to go up to 15mg to get any relief (in hindsight I should have gone to 17.5mg). That was Dec 2016. so almost 3 years now since it started severely.

I haven't got GCA but probably worse.. Moyamoya (diagnosed last year after trying to figure this out since my teens. as I have a greatly reduced blood supply to my brain and this is reduced from a year ago on CTA and MRA I really don't know if my fatigue is PMR or moyamoya. I'm thinking moyamoya but mostly they seem to have what I used to have which is like ministrokes.. numn]bness, balance off dropping things, foot drop, migraines (horrible but stopped over 10 years ago..probably when those moyamoya vessels were getting formed-felt like it)), and symptoms like the jaw pain and facial pain of GCA which I've had for the past ten years or so.. I just had a 1,6 tooth out and it is helping the pain go away there though, and I'm hoping it will make the PMR go away... but the fatigue is still there.

So when people say they have fatigue, it is more on PMR forums than on moyamoya forums, although they have it too... but I guess they mention the things like not being able to speak, paralysis, loss of vision (yep that happens too). So also this a heads up to anyone who has similar symptoms to GCA but told they don't have it.. and has had migraines and numbness, or tingling or balance problems ..get an MRA and ask about moyamoya. its rare, but that doesn't mean it doesn't exist and it's getting diagnosed more and more..but missed too much in Australia and the UK.

OK back to my question, is fatigue overwhelming so you cant function mostly and tire too easily PMR on too low a dose of Pred and adrenals not kicking in. I haven't got the shaking and vomiting I used to get 20 years ago when I first went on thyroid meds and it stressed my adrenals and I don't have that brown patches above my mouth etc either. I'm trying to rule out PMR causing this fatigue..as otherwise its the brain blood /oxygen levels and I need an op soon...(then again I'm not having those stroke(TIA) symptoms either but maybe that's as I've given up doing things as too tired? thoughts anyone?

[PMRpro Ambassador]

You urgently need a synacthen test - to see if your adrenal glands are capable of producing the top-up of cortisol you need to function well. That is the most common reason for overwhelming fatigue at this level.

IF the test identifies they aren't happy, then you may be told to stay at a slightly higher dose of pred OR be switched to hydrocortisone which has a shorter halflife in the body so the adrenals are poked more to wake up. But above all, if they aren't working effectively, you will be provided with emergency medication for use if you have signs of an adrenal crisis threatening or if you have a situation such as accident or other trauma where normally your body would produce a boost of cortisol to cope.

Do speak to your doctor - 3mg is the ideal dose to do the test.

[Suffolklady in reply to PMRpro]

PMR pro what is the difference in hydrocortisone and pred. I have terrible fatigue and I’m on 5mg reducing to 4mg very slowly. PMR pain is not a problem but it’s so difficult to get off these steroids with tiredness and generally feeling unwell and you mentioned a switch. I see the Endocrinologist beginning of Nov wonder if it’s worth mentioning what do you think?

[PMRpro Ambassador in reply to Suffolklady]

I'm sure they will mention it if they think it is appropriate.

They are both corticosteroids but their effect lasts different times: pred is usually a once a day medication, HC is at least 2x, sometimes 3x daily to cover the full 24 hours. It isn't as powerful for PMR pain as pred is. But because it is shorter-acting it is good for trying to wake adrenal function up.

[Suffolklady in reply to PMRpro]

Thank you for that, very informative. Will the switch if it is made affect the bodies system like a withdrawal as it’s a different type or is there little change do you think?

[PMRpro Ambassador in reply to Suffolklady]

Difficult to say - one lady was switched from pred to HC but couldn't cope with the HC side effects so switched back. Like the rest - everyone is different. You do need a higher dose (numerically that is) split over a few times a day with HC.

[SnazzyD]

I agree with PMRPro. Your situation is so complex and who can say what is causing what. However, the Synacthen test is specific and will say if your adrenals are capable of working or not. If they are not, you need intervention fast.