tired

[granelliheywood]

 The more I reduce my preds I am down to 5mg from 15 after over 17 months due to flares I am grinding to a halt, no pain other than what you expect from PMR just a feeling of weakness and lack of drive tend to put things off till later so to speak.Its driving me mad as I have always been self motivated should I up my preds or see it through and wait and see. 

[suzieh]

I remember feeling like that too.  Just to make you feel better I am now 6 months off all pred.   Feeling normal again - no pain.  I did have to stay at 5 mg for about a year- I tried reducing so slowly but all in all it took me nearly 3 years to get off completely.  Reduce very, very slowly so your body doesn't really notice and do stop whenever you feel any worse.   Sometimes paracetamol and or ibroprofen can get you through rough days.   It isn't a race but can be frustrating. PMR does make you feel low and you do wonder whether you'll ever feel normal again.    Hope this helps you a little.

[granelliheywood in reply to suzieh]

would you advise me to stay at 5mg as I have no pain as such or increase the dose which after getting to this low dose would disappoint me no end 

[suzieh in reply to granelliheywood]

I would stay at 5 mg if not in pain. Rest as much as you can, eat healthily and lots of sleep. Exercise if you can- I managed to do aqua aerobics and Pilates at my own level- all helps to raise spirits! Also gardening is good or walking- fresh air and being outside helps. Rest though when you need to 

[DorsetLady PMRGCAuk volunteer]

Hi granelliheywood,

Unless you have any specific PMR pains, which you say you don't, then it could just be your adrenal glands not wanting to start working again. 

Mine seemed to take ages to function, in fact not sure they doing their best even now. Started feeling really fatigued when I got down to about 6mg, and that has continued, albeit not quite so severely, until now (down to 1.5mg) and about 18months on. It's only the last few weeks that I feel I am beginning to get back to some sort of normality. 

What I find strange is that I can do an hour of Pilates and not feel any effect, but given something to eat (even something as small as a scone) and I'd be wiped out for 10mins afterwards! 

I did have a load of blood tests just to check if it was caused by anything else, so that might be the way forward. Plus if your GP is happy to agree, you can be tested to check if your adrenal glands are working or not. 

Also, if you've had problems with flares that may be affecting things, maybe you just need to stay on 5mg longer to let your body settle down. After all you have a serious illness, and sometimes it just gets to a stage where the body has had enough, and needs a bit more TLC than you realise. 

Sure others will be along with suggestions. Hope you soon improve. 

[markbenjamin57]

Hello grannelliheywood. 

I can well-relate, and in a similar context (physical / psychological symptoms)!   Don't forget, we are coping with what I call the 'dual and conspiratorial demons' of both PMR (which, as an illness, is pretty hard-hitting in itself) and also the tricky and unpredictable process of weaning-off the powerful meds (that manage the worst of the symptoms of it, but have their own side effects too).  It's a catch 22: one or the other, and a case of managing contingencies: especially where there is the risk of GCA (much more serious..). 

So is it any surprise that, even with supposedly 'straightforward' PMR,  the uncertainties around both of the above, in combination, make us feel physically and mentally exhausted?  To add fuel to the fire, access to reliable information about the course of the illness (including steroid tapering regimens) seems to be a difficult and tortuous process for some newly diagnosed sufferers, if not for some old-hands.

Like you, and I'm sure for many others here, I am and always have been a 'task-oriented' person and like to get on with the stuff of life.  But an illness like PMR can stop us in our tracks (as I well-know): and I'm certain that adjusting to / accepting it psychologically is as great a challenge as it is physically.

If it helps, I have written an article about the 'mind and body' process in all of this, from my own painful experience.  It has received some positive feedback from other PMR 'survivors', and if you would like a copy, let me know.  It's too long to publish on this forum but I will be very happy to send it to you privately if you want to send me your e.mail address (I can't seem to display my e.mail add here without some kind of technical or editorial intervention..).   In writing this response to your post, I agree with and support the replies from any others in this group. 

In the meantime, keep positive and pace yourself while the condition takes its course.

MB  

[HeronNS in reply to markbenjamin57]

You can always send people a private message.  Just click on their name and you will go to a page where you can do that.

[Celtic PMRGCAuk volunteer]

granelli, you've reached that oft difficult 5mg stage where your adrenal glands will be desperately trying to get back to producing their pre-PMR supply of cortisol (natural steroid), having been suppressed by the long term artificial steroid, Pred. 

If you have felt more weakness and lethargy since reaching the 5mg level, perhaps a very small increase back to where you last felt comfortable will provide an answer as to whether you have reduced slightly too far for the amount of inflammation still lurking.  On the other hand, if you have no actual pain or stiffness, then remaining at the 5mg dose for considerably longer will hopefully allow your adrenal glands to slowly catch up.

Don't ever feel concerned about remaining at the 5mg dose for a considerable length of time if your body demands.  There are unlikely to be side effects from this dose.  I had returning symptoms upon reaching the 5mg dose and, knowing no better at the time, continued reducing as advised - by the time I reached 3mg, I was in agony and back to square one which necessitated a return to 10mg to get under control.  Once back at 5mg, my rheumy kept me there for 5-6 months (longer if he'd had his way!) but with hindsight it was the best advice as I was then able to successfully reduce to zero, tapering at a snail's pace - sort of tricking the body into not noticing the steroid withdrawal.  

[granelliheywood in reply to Celtic]

Thanks for that seems like the best way is to stay on 5mg for a while then see how it  turns out

[PMRpro Ambassador]

As the others have already said - it sounds as if your body is struggling to keep up with the reduction now you have got below 7mg. 

Below about this level your own corticosteroid production has to start up again - while you are taking more than 7g pred or so that is enough to cover the body's needs each day but below that dose the complex feedback system that tells the adrenal glands how much to make has to start working again. Not only that, but sometimes the autoimmune disorder has affected the adrenal glands too and they are no longer as efficient and in some cases unable to work at all. 

If you start to feel MORE tired as you reduce below 7mg you should slow the rate of reduction down - the Head of Medicine in my local hospital says he is sure that for the vast majority of patients reducing very slowly is enough to let their body adjust. As Celtic says, one of the best PMR doctors we know likes to keep his patients at 5mg for months which is a dose that is just enough for your body to manage on but a bit below ideal - so you are fairly safe from any risk of an adrenal crisis but your body is being prodded to start to top-up production again. Once it has had its graded return to work you can continue to reduce the pred dose and the adrenals will increase their production accordingly.

For a small number of people, even this won't work and the fatigue will increase - to a level that makes PMR look a doddle! If the adrenal glands have handed in their notice altogether rather than being on a sabbatical then they may not wake up again and either not make enough cortisol or even none at all. In that case you will need to remain on a low dose of corticosteroid for much longer, maybe even for the rest of your life. It is just the same as needing to take thyroxine because your thyroid isn't working properly.

There is a quick and simple blood test called the synacthen or ACTH stimulation test which can identify whether the adrenal glands are CAPABLE of resuming their job of cortisol production. Endocrinologists would like to see all long term steroid patients tested at about this level - other doctors are less aware. If the adrenals are not capable of doing their job then there is little point struggling with a further reduction, how ever slow it is. If they are just being slow you will be able to get off pred eventually, just it may take a while.

The synacthen test is done first thing in the morning at 9am. You do not take your pred for 24 hours before - i.e. for most people you just wouldn't take that morning's dose - and they take a sample of blood to get a baseline cortisol level. Then they give you an injection to stimulate production by the adrenal glands and take another blood sample about half an hour later. That is a "short synacthen test". Sometimes they take more sample at intervals, a "long test". Then you can take today's pred dose and go home.

[cdenoncourt]

Hi Granelliheywood,

This may be a good moment for me to share an herbal remedy that seems to help me with the fatigue I attribute to low adrenal function as I reduce prednisone in the single digit doses, especially lower than 5 mg.  Every afternoon about 2:00 or 3:00 I make a cup of licorice root tea letting it steep for 8-10 minutes. Licorice is known to stimulate cortisol production, and I'm convinced it perks me up.  BE AWARE that licorice is also known to increase blood pressure, so don't take it if you have a problem with high blood pressure.  It's easy to find more information about it if you research a bit online.

[granelliheywood in reply to cdenoncourt]

High BP 

[HeronNS in reply to granelliheywood]

I looked at a website for "safe" herbs to promote adrenal function and I don't think there is a single one I would try, unless it became a real necessity.