Hi everybody. Hope you are all keeping safe and well. I am having a bit of a problem and would be very happy if l could get your feedback. After a long struggle sometimes with setbacks l am finally down to 2mgs Pred. The thing is l now feel so fatigued and sometimes short of puff, is this normal to feel this way? And if so will this dreadful feeling continue as l slowly reduce to zero? I must admit l have never felt so awful in my life. I started with GCA over 3 years ago and then went on to PMR. The only problem l still have with the latter is stiff painful lower leg pain but that is reducing. Does anyone else feel this tiredness and shortness of breath please ? It can feel quite frightening, especially as it is always worse in the evenings. AlwynK
Fatigue at 2mgs.: Hi everybody. Hope you are all... - PMRGCAuk
Fatigue at 2mgs.
Hi,
Maybe connected to adrenal glands not working enough to compensate for low Pred doses - certainly the fatigue is very common - breathlessness not quite so much, but have a look at this post -
healthunlocked.com/pmrgcauk...
I would suggest you don’t try and reduce any more until you have discussed with doctor and maybe seek advice/tests for adrenal capability.
Addendum. - just read your post of 9 months ago when adrenals were discussed, what happened then with testing etc…..anything or nothing?
Thank you for your reply. The post made for very interesting reading and l will definitely be contacting my GP. I did have a cortisol test 9 months ago and he said it was normal but l was on about 4 or 4.5 mgs then. I have since come down very slowly using DSNS to 2mg. I did ask GP on my last telephone appointment with him a couple of weeks ago should l have a synacthen test but he said he didn’t see the need for one seeing as l was doing very well. I’ll see what he says tomorrow.
The result of the synacthen test may have been normal and that is good if it was OK at 4mg, it shouldn't have gone backwards - but that doesn't mean that normal service for day to day living has settled down to smooth operation. You need 3 boosts of cortisol over the day and it sounds a bit as if the 2.5mg dose plus normal function was just enough to get your through but taking away 1/2mg takes you below what you need. It will probably settle down again but it will take time - just slow the process down, stay at a new dose until you feel less fatigued.
Wow. I have a number of things on that list. I’m at 2.5 mg now (5 years PMR). Deathly fatigue. Lost 14 pounds in June! Irritability is off the charts. I’m queasy … and that’s unusual for me. I wake up feeling dreadful but by later in the day feel much better. My rheumatologist mentioned getting a morning cortisol test.
Then go for it, it may lead to another more definitive test - and subsequent treatment (if required) - hopefully that won’t be necessary, but best to know the situation.
It is almost certainly your adrenal function lagging behind the reduction of the pred dose. I would suggest you stay at 2mg for some time - and speak to your GP about having at least a basal cortisol level checked (a morning level before taking your pred) and preferably a synacthen test to see if your adrenal glands are beginning to wake up and function properly.
Has this just started at 2mg or was it happening at higher doses?
Thank you for your reply. This fatigue has been around for a while but only in short bursts and it was something l could cope with and adjust my lifestyle accordingly. But it really started at 2.5 and now l’m down to 2 it’s really kicking in, especially so in the evenings. I’ve also lost a lot of my appetite for food and have dropped my weight by half a stone in the past 2 months.
All symptoms of Adrenal issues as you can see from my post.
Thank you Dorset Lady. Will contact my GP tomorrow. Had no idea adrenals could make me feel like this!!
Mine took about 8 months to “spark” between the range of 6mg down to 3mg, not too bad generally just random bouts of deathly fatigue as described by others.
I'm on 14.5 and am feeling the same "deathly fatigue". Is this also normal?
Well that’s obviously not adrenals - Pred too high (above what we call the physiological dose your own body produces - approx 7.5mg) - so it must be down to either your illness itself or the Pred, or more likely a combination of both. No magic answer I’m afraid , except take rests as much and as often as possible…and maybe take a serious look at your doses and your activity - and see if there is any sort of pattern. Sometimes there is, very often there isn’t, it’s a by-product of chronic illness unfortunately.
Due to PMR or even pred yes - but not because the dose is too low for day to day needs. Fatigue is an integral part of autoimmune disease and is made worse with trying to do too much.
I started getting the deathly fatigue around 5mg, it is crippling. It is my adrenal glands. It has improved a bit but I still feel very tired.
Me also, as per piglette ‘s post. I stopped tapering for a few weeks to let things settle. It’s important too to slow down your physical activity, I needed quite a few sofa days to let my body recover.
Thank you 123mossie. I think that like you l really must stop tapering for a while. I’ve purposely done things very slowly to avoid too many side effects but it’s got me at 2 mgs.! Thinking l was doing ok l booked a short 4 day coach trip to Scotland last week, just to “get away” Soon realised it was the worst thing l could have done and am still trying to recover. Silly me.
My experience is personal I am not an expert. Fatigue is the worst part of reducing. I didn't have any breathing issues I stopped the steroids after 10 months tapered from 15 to zero I am now 14 weeks steroid free I still have bouts of fatigue my best guess is that the adrenal glands are not entirely up to speed I still have bouts of brain fog and low tolerance of mood but I believe these symptoms are reducing I continue to excercise 5 days out of 7 I have set myself the target of been back to normal within a year of stopping the medication. At 2 mgs I felt dreadful but just pushed on refusing to accept how I felt belief and determination are key elements in the recovery process in my opinion. I know others like myself who on doctors advice stopped the steroids and pushed on it does appear to get better but it's not pain free and tiredness continues. Good luck
Thanks Billhill, that’s really good to know, and congrats for reaching zero and staying there. To me it seems an impossible target to reach, as the saying goes the mind is strong but the body is weak. I am 77 next week and l sometimes wonder how much more these old bones can take. It really is a tremendous struggle the lower mgs l take. But as you say, belief and determination are key. Battling on.
It can take anything up to a year after finishing Pred for your “system” including adrenals to get back to normal…..so hang on it there, taking each day as it comes.But do be aware that pain can sometimes be usual day to day issues, but could also be a recurrence of PMR, especially after such a short time on steroids.
Thank you for your post Dorset Lady. I will continue on 2mg as suggested. Have got a GP face to face appointment on 5 August so will see what he thinks. Many thanks
Dear Alwynk,I relly wouldn't worry too much at such a low dose. Maybe go back up a milligram or two to see if you feel better?
If I can get below 5 mgs I will be very happy! I'm currently on six and a half mgs and I've had PMR for four years.
If you have to stay on a few mgs for the rest of your days it is not the end of the world! Peronsally I don't think "Club Zero" is for everyone. At the end of the day it's about your quality of life.
Best of luck!!!
I agree about quality of life. I’m at 3mg , tried hydrocortisone but I felt unwell with that. Rheumy returned me to pred , feeling much better. My basal cortisol test was 129 , not enough to function . I’m prepared to stay at 3mg if I can function without pain. I still have bouts of fatigue and have learned to pace my activities so if I have a busy couple of days , I then have some sofa days too. I now have no contact with my rheumy until January 2022, yet another telephone call 😡 no face to face since before the pandemic. Good luck with your journey. X
Thank you York54. I’ve never had a rheumatologist. My GP said there was no need for me to have one as he was able to look after me. He has done ok so far but doesn’t appear to have much idea about prednisolone and it’s side effects. I have learnt so much more from being on this wonderful healthunlocked page and reading all your posts.
But a basal cortisol of 129 is high enough to make it possible it will improve with time - 3mg is low enough to encourage it to do so.
Alwynk I will just add my sixpence worth for you. I am 70 and in the GCA camp and am now down to 2mg like yourself from 60mg exactly 2 years ago today - no party planned unfortunately. The journey down from about 4.5mg has been bad for the last nine months. The fatigue and breathlessness have been hard to deal with and even as I type this at 10 o'clock in the morning I am exhausted having just got out of bed after nine hours of deep sleep. I will potter about this morning and early afternoon and doze for a few hours late afternoon. Strangely I seem to get a bit more lively then as the day goes on and by bedtime I feel almost normal. I hope you are encouraged by Billhill as I certainly am by his breaking through the pain barrier approach. Now where's the Radio Times let's get the TV warmed up. Roll on the Olympics!!
Hi slow day, your post has really helped, thank you. It seems the only difference between you and l is that l have dreadful nights with only cat nap sleep. No pain or discomfort , just a busy mind that won’t shut up!
What time of day do you take your dose? I am well known for advocating 2am dosing but what I have found on the three occasions I managed to get to 2-2.5mg is by 4pm the tank is empty and by 6pm I've totally run out of steam and could feel quite unwell. I then switched dose time to around 9am for two reasons. Firstly, I wanted as little synthetic cortisol (prednisolone) in my bloodstream as possible in the morning so as not to inhibit the natural release of cortisol which should peak at 8am. Secondly my low pred dose would have a few more hours before being fully metabolised thereby getting me through to bedtime. Now all this does depend on whether or not you are a slow or fast metaboliser, and how much of your dose your body actually absorbs but you might like to try it as it has helped me. One fly in the ointment which you should bear in mind is, if your PMR is still active (even if only minimally), by dosing at 9am there will be some build up of inflammation so you may get a return of some morning stiffness. If this is the case and you're sure the aches are PMR and not due to steroid withdrawal or advancing years! then you should hold off continuing to reduce and consider taking your pred at 2am again. Personally I would avoid adding a few mg here and there at this stage because the yo-yoing clouds the picture. It's so tempting to add 1mg and if your PMR needs it, so be it. But your adrenal cortex won't thank you.I plan to follow the advice of the kidney doctors who keep their patients on their reducing doses for three months before attempting a tiny reduction once they hit the 4mg and below territory. Good luck
A fascinating reply PMRnewbie2017, l must admit l always take my Pred about 9.a.m. I have never thought about taking it during the night, mainly because my stomach seems very sensitive then and l don’t want to set it off with heartburn etc even if l do take pills with yoghurt. Regarding the leg pain, l too wonder whether it is the tail end of PMR or steroid withdrawal pain, or maybe just my age! It never seems to get any worse or any better for that matter so l really don’t know, l will stay on my 2mgs until l next see my GP in early August and see what he thinks. Thank you for your post.
I am also very fatigued and sometimes breathless. The breathlessness feels like oxygen starvation - just not enough air in the room accompanied by a doomy feeling. I have had an ECG ( normal) a chest X Ray ( normal) bloods show nothing significant. A questionnaire on sleep apnea showed a high number of ticks but the questions seemed to concentrate on how individuals cope with breathlessness.I sleep propped up when it happens at night.I am on 9 mgs of Entric coated Pred. So not in adrenaline insufficiency territory .I invested in a finger pulse oximeter that always gives a normal reading on blood oxygen levels. I find this reassuring. I am unfit because the exhaustion and general malaise has made me too sedentary. I get breathless even tying my shoelaces. I think this maybe Pred related. Also, weight gain around the neck area does not help ( steroid related).My GP surgery doesn’t really engage in spite of letters from my Rheumatologist. They mention a sleep clinic. My breathless episodes don’t always happen in bed though. In your place I would want a Synacthen test, as outlined in DorsetLady’s helpful post. Not sure what’s going on with me though. It is scary.
Do you know what your O2 sats reading is? Comes a % and should be 98% or thereabout. I have a pulse oximeter - do you?
Yes I have one and it is always 98% or thereabouts.
Just wondered - mine is 95% unless I consciously breathe deeply and even then it doesn't go above 97%. And I can't breathe like that for long!!!
My son bought me a book called Breath. It talked about how none of us are breathing properly and it would be profoundly beneficial if we did, consciously and deeply, in through the nose and out through the mouth. I found this an awful strain. My normal breathing is through the mouth and really quite shallow. Although the book was slightly alternative, it made some valid points. I must return to it. Emotional upset can make me feel breathless, I notice. Perhaps my oxygen level is a bit low sometimes - you are supposed to race off to hospital below or at 95% aren’t you?
I only ever breathe through my nose and not chest breathing - normal breathing rate is 12-20 times per minute, mine is 10 or so. At college in physiology class we'd to time our normal breathing and consciously slow it - I was told not to!!! I'd have to live at the hospital 
I`m struggling to breathe through my nose at the moment...first time in my life I have had Hay fever this year....nose totally blocked, worse at night sometimes...tried two nose sprays no good.......don`t want to take anti-histamine if they make me more fatigued!
I haven`t heard back from MTX nurse who rang me last week....she was going to contact Max about weather I should lower pred...still at 7mg...can`t see how my adrenals will ever recover if I don`t poke them by lowering....I have extreme fatigue and very heavy legs today.....the worst I have been......do people split the dose 5mg at breakfast and 2mg pm with adrenal suppression?
Don't really know - don't think so.
Loratidine doesn't make me tired - I suppose you have to try, But it is usually dirt cheap from Lidl.
Hi, yes a lot of your post rings true, my breathing is much like yours . Going upstairs l can only go one step at a time and can’t exercise much because of s.o.b. I too had ECG ( one of those that is attached to you for a week) came back normal, ditto chest x ray, normal. Also bought an oximetry and that reads out at 98. So, like you l can only think that this is prenisolone induced. I have noticed though that this breathlessness is becoming more pronounced the lower dosage l am on ( 2mgs) and l’m finding this very worrying, hence my post to you all asking is it ok to be feeling like this!! Am now going to follow all the fantastic advice that has been offered to me and have got a doctors appointment for 5 August to hopefully get some tests done. All the best to you Sheffield Jane
I am helped by a fan blowing in my face at night either psychologically or physically. Good luck!
Yes , yes , yes I’ve had to get an inhaler from my Dr. as the breathlessness was becoming distressing. This has helped a good bit , but has not completely eliminated it. The fatigue is also overwhelming and I’ve asked people about this before. Even after performing the simplest of tasks , I feel I have to rest , or rather , be seated for a period. Hopefully, my energy will return slowly once I’m off Prednisolone completely, but at 4mg , I didn’t expect to feel like this. It doesn’t help that I also have cervical myopathy and spastic Quadroparesis - a degenerative condition, caused by cobalt radiation treatment for childhood neuroblastoma , decades ago. The gradual spasticity is excruciatingly painful especially at night. We just have to soldier on and make the best of each day. You have my sympathy. I thought 4 mgs was an adequate amount of steroids to stop any symptoms of struggling adrenals. Maybe it’s not that at all ?? The inhaler definitely helps with the breathing, so perhaps you could discuss this with your Doctor. x
Depends on the person - the amount you absorb from the oral dose is crucial and it can range from 50% to 90% .
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