Adrenal fatigue?

[Trainy]

I have been suffering the most dreadful fatigue and breathlessness recently with gentle exercise such as walking. I can go to work OK, I'm a plumber and carrying heavy things even upstairs is no problem but going for a walk in the park is a major challenge. I have been allowed by my doctor to self regulate my pred and have settled at 3mg for the last year or so but he has retired and the new guy insists I should reduce to 2.5 then 2. Is reducing by from 3 to 2.5 enough to cause this increase in fatigue? I fall asleep more easily also. Your opinions and advice would be appreciated.Thanks in advance.

[DorsetLady PMRGCAuk volunteer]

Have a look at this re Adrenals -

healthunlocked.com/pmrgcauk...

And whilst you do need to reduce Pred to get them going again, if you aren’t using one of the slower tapering regimes we talk about even 0.5mg can make a big different.

Couple of examples here -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

-and it might be worth asking GP for a morning cortisol blood test to check the state of your adrenals.

[SnazzyD]

I can only speak of my experience but a 0.5mg drop at this level was plenty to kick off a fresh round of fatigue, weakness and needing to sleep.

What is different about lugging your kit about and walking in the park?

[piglette]

I really sympathise. I became a zombie.

[PMRpro Ambassador]

The combination of work and low pred that is at a dodgy level would do it I think. Dodgy in that for many people it is enough to suppress cortisol production but it isn't enough to give you a load of get up and go! It will take time. But I think that GP needs to understand what physical work involved - though like Snazzy, I wonder why a walk in the park is harder than carrying your tools upstairs????

[Kendrew]

Hi Trainy

I'm currently on 2mg of pred but have been experiencing quite heavy fatigue and lack of strength for some time. I know some will be a consequence of my PMR & long term steroid use but some is also likely to be a consequence of my adrenals trying to 'catch up'.

I can walk briskly on the treadmill for 30mins with no more breathlessness than you'd normally expect, but just walking a short distance up a gentle incline can feel like I'm climbing Everest sometimes......one of the quirks of living with PMR & steroids, or something else??

I'm currently having a battery of different tests for heart health & function, to hopefully rule a heart issue out, but if they all prove to be satisfactory, then it may be a combination of muscle wastage, sluggish adrenals and the PMR.

My experience will obviously have some variations from yours because we're all individuals, but it can be helpful sometimes to just hear other people's experiences.

[Merryfield in reply to Kendrew]

Check on white blood cell count.

[Kendrew in reply to Merryfield]

Just had all bloods done for rheumatology appointment and WBC well within normal parameters. Rest of FBC all okay too. Also had thyroid checked, inflammatory levels, liver & kidney function, vit.B12, calcium, vit.D & K2, electrolytes, hba1c, cholesterol. All good.Appreciate you responding.

[Trainy in reply to Kendrew]

I too am having a battery of heart tests hopefully just to rule this out. First cardiologist wasn't as she put it 'unduly worried' but current diagnosis by gp, which seemed at the time to have been plucked out of thin air, is pulmonary hypertension which apparently rules out air travel. I didn't consider the link between reducing the pred and my fatigue until I read another post recently that listed all my symptoms and I'm sure the doctor hasn't because the latest question was 'could you have caught something from foreign travel?' When I asked why, she said she was just trying to rule things out. For now I've gone back to 3mg per day and see if the fatigue lessens before my appointment with a second cardiologist in sometime between 12 days and 12 weeks according to the NHS app.

[Kendrew in reply to Trainy]

I hope you have a satisfactory outcome from all your tests Trainy. Wishing you all the best.

[PMRpro Ambassador in reply to Trainy]

"pulmonary hypertension which apparently rules out air travel"

Not necessarily at all.

ncbi.nlm.nih.gov/pmc/articl....

I'm pretty sure my husband had PH, was never told not to fly and he did a fair bit.

[Pixix in reply to PMRpro]

I hope not! That would severely ruin my one remaining hobby of travel! I’ve had hypertension for many years, & declare it to the travel insurance companies (along with my new diagnosis of hypotension, which is making medicating it difficult!) see my full reply to Trainy! About to read your link! Thanks, S xx

[Trainy in reply to PMRpro]

Thanks to all for the reassurances and replies. It was only the doctors opinion that I wouldn't be able to fly , I haven't checked with the travel insurance yet. I'm back to 3mg pred and see how that works out. Could be that it's time to accept that I'm 64 this year and grafting 40 hours a week with what now seems to be quite a list of medical issues is too much.

[Pixix in reply to Trainy]

Oh my goodness, I hope not! I have hypertension (& bizarrely now have hypotension, which makes it hard to medicate). I’ve had it for many years & travelled by air all round the world, frequently! I declare both, each time, to the travel insurance, & receive a quote which covers both. On the subject of fatigue, mine has been much worse in the past two months, when I haven’t tapered from my norm of 2mg. Not tapering as I have other, more pressing, medical issues. It looks as if my extra fatigue & sheer problem of keeping my eyes open is caused by the new tablet I’m taking…that is normally used for hypertension!! It’s not always the steroids, or the PMR, that’s the culprit!

[Sharitone in reply to Pixix]

Just being curious here: what kind of holidays do you go on that are manageable with deathly fatigue?

[Pixix in reply to Sharitone]

We went to Italy last year. We flew to a tiny airport, with one luggage carousel & no walking, where we picked up a car & drove 45 minutes to the villa we had hired. We only went out every other day, & explored local towns & villages, no cities, but we’d been to most before. It worked, just. Had some lovely days looking at the view of mountains & villages, a bit of crochet, some eating & drinking. I think planning is the key to success, &, if going with a partner, making sure they know that you can’t go out every day, or as you used to! We self catered, too tired to go out on the evenings we’d been exploring, & more peaceful eating outside with the beautiful sunsets! Recently, many sufferers have been posting that they are going on holiday (& should they increase their steroids to cope). I don’t increase mine, so I deal with it in a different way. It’s not recommended to use steroids in that way. My last job involved covering all of Europe, & lots of travel, & the HQ was in New York. I managed to keep going through about 7 years of fibromyalgia, but then took redundancy & early retirement. But one of 5he worst aspects of fibromyalgia is the dreadful fatigue, & there is nothing, in my case, available for help it. I got used to fighting it & struggling awake at 4am to get first flight out for meeting in Paris at 9am. But, as I said, my fatigue is worse the past two months & appears to be caused by a heart tablet that I’m trialing.

[Sharitone in reply to Pixix]

thank you for that. It's good to know it can be done. We have booked a short stay in Guernsey, the idea being that we can take the scooter in the car. but I'm quite nervous about coping.😟

[Pixix in reply to Sharitone]

I’m nervous every time. I pack up to a week before. I plan everything, all the little things. I aim to do nothing for 2 days before we travel. That fails sometimes, but I still get one day! Our local airport is 20 minutes drive away, & tiny! I did think about going to Jersey, but 5he weather seems much the same as south England & we want somewhere with sun & warmth. OH has long term asthma & heart problems. I suffer from Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration, so I virtually need hold space for all the meds I take!! I think preparation is the key, minimise the stress. At larger airports Book assistance if you are registered disabled! Hope you have a great time in Guernsey, looks like you’re not flying I’ve just realised & that will minimise some stress! Beaches to sit on, too! S x

[PMRpro Ambassador in reply to Pixix]

You don't have to be registered disabled to have airport assistance.

[Pixix in reply to PMRpro]

Oh, I didn’t know that! Thanks!

[Sharitone in reply to Pixix]

Thank you or your input. Particularly for reminding this predhead that the regional airport is much more manageable then a big one. We used to go from Bournemouth nearly all the time, so goodness knows how I managed to forget about it!

You're right about the weather ion Channel Is. Our last holiday was to Jersey, nearly 5 yrs ago, before Covid and PMR struck. It rained a lot, but it was ok, because there were so many things to visit. 10 days were easily filled. It is expensive, though.

[Pixix in reply to Sharitone]

If Bournemouth us close to you, then Southampton isn’t too far & they have a lot of flights to the Channel Islands: less walking, less crowds, less hassle, etc etc! Yes, I’ve heard Jersey is expensive to visit but it looks lovely! S x

[Merryfield]

I would have my blood checked for anemia. My exhaustion has gotten so bad I spend most of day in bed. I have been preliminarily diagnosed w Chronic Leukemia. PMR can morph into blood cancer. Just learned.

[random901 in reply to Merryfield]

Oh my goodness, Merryfield, where did you learn that?

[Merryfield in reply to random901]

From my new pmr doc head of rheumatology at Hoag Hosp. I had actually googled it the night before and found some legit info. I still have active pmr as well as aggressive lymphoma. All I am saying is obviously not everyone but if you think your deathly fatigue is just from reducing steroids have a check for everything. Mine was only caught a few weeks ago in an mri for something else.

[agingfeminist in reply to Merryfield]

I think we need a reference for that....can whoever told you please give a link to research?

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

There have been a few studies over the years, but the general consensus of opinion seems to be patients with PMR are no more at risk of cancers than those without…Although early days there may be more diagnosed.. but that probably has more to do with the fact that more blood tests are being carried out whilst trying to diagnose PMR, and as raised inflammation markers are also a sign of cancer that is found as well.

Quick look produced this info - plenty more online

ncbi.nlm.nih.gov/pmc/articl...

[Merryfield in reply to DorsetLady]

I still also have pmr. Precursor doesn’t mean pmr actually becomes blood cancer. Sorry.

[PMRpro Ambassador in reply to Merryfield]

Yes it would

"A precursor of a disease is a definable pathologic state that progresses directly to disease without a known intermediate step, and whose presence substantially increases the likelihood of disease."

[PMRpro Ambassador in reply to agingfeminist]

See my reply to Merryfield further down

[Kendrew in reply to Merryfield]

Red blood cell count all good.Never heard that before. Would be interested to know source of that information?

[PMRpro Ambassador in reply to Kendrew]

See my reply below

[PMRpro Ambassador in reply to Merryfield]

PMR does NOT "morph" into blood cancer. Blood cancer is one of the rule-out diagnoses in PMR as the symptons of presentation can be similar and there is an increased rate of diagnosis in the first 6 months after PMR is diagnosed but that is not because PMR turns into blood cancer - it is because of the increased medical monitoring and inaccurate decisions. And that is NOT the same thing at all.

[Kendrew in reply to PMRpro]

Many thanks for clarifying that. Makes a lot more sense. I definitely thought that seemed quite unlikely, hence wanting to see the evidence to back it up.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

See this - healthunlocked.com/pmrgcauk...

[Kendrew in reply to DorsetLady]

Thankyou ❤

[Pixix in reply to Kendrew]

Me, too!

[Merryfield in reply to PMRpro]

Didn’t say always and just learned that it can from the head of rheumatology at one of the best hospitals in So Cal. I have aggressive lymphoma.

[PMRpro Ambassador in reply to Merryfield]

In this paper from 2016

ncbi.nlm.nih.gov/pmc/articl....

it says

"Interestingly, these lymphomas were mostly diagnosed in the first year following the diagnosis of polymyalgia rheumatica. These observations may imply that lymphoma is sometimes already present when PMR is diagnosed and is initially improved with prednisone."

So they are not saying it is a precursor which, as I explained above, is a pathological state that proceeds to another disease state. If your doctor has other study evidence that suggests otherwise, I would be very keen to see it.

[Bluey-1]

I am currently on 3mg and have suffered heavy bouts of fatigue. I’m having a Synathcen test on Friday following a low cortisol test a few weeks ago. I’m ok walking but like Kendrew find inclines make me a bit breathless. I do rest up as others have advised on here when fatigue is total. Just had a wonderful holiday in the sun but even fun social occasions can be exhausting and I find I have to pace my days to enjoy them. I’ve rested up two days since my return so I’m ok to meet friends for a birthday lunch today. It does help being retired. From what people say on here this adrenal awaking stage on low doses is a tough one. Try and take things easy if you can to roll through it. I would also advise requesting a morning cortisol test. My rheumie suggested it at my last appointment in March when I described my symptoms.

[WhatNoCarbs]

As above try anaemia, which I‘ve just been diagnosed with. Start of March I was happily walking 10-12 miles every 2nd day on holiday for 2wks. Now I’m having circulatory symptoms within about 1.5miles. Tried 2 miles yesterday, which was too much. Quite concerning! Guess I just need to take things more gently and amend my diet (which I thought was OK…obviously not)!

[offprenisone]

this PMR is not painless ...i'm getting off pred after 13 yrs...i will do it even if i have to go thru the many side effects..the mood swings and brain fog and weak bones are the reasons my doctor wants me off pred...I really feel better now that I'm on 2.5 mgs...its been painful and hard to get down to this level but i'm starting to feel more like myself and I know I will always have pain but pred for long use is not for me...

[OilyWiggles]

As regards progression to cancer, I haven't read anything specifically related to PMR, but it is becoming increasingly clear that chronic inflammation does give a higher risk of developing cancer (which is already a 50% chance!).