Query on morning tiredness

[or01ah]

Hello I was diagnosed nearly three years ago. I was off prednisilone for six weeks but due to a flare am back on 2 mg. I still have morning fatigue and sometimes take two hours to get out of bed. My fitness advisor queried cortisol levels and I wondered if anyone else has experienced this? Me try Christmas to all.

[PMRpro Ambassador]

While you are taking pred, your adrenal glands stop producing cortisol as the very complex feedback system tells them there is already plenty of corticosteroid present in the body. After 3 years on pred your adrenal glands will not yet be back to working properly so to some extent your fitness advisor may be right. It is usually said that it takes at least a year for them to recover properly. However - a warning: don't believe claims that supplements will make them work better!

While you were taking pred it was a sort of replacement therapy and usually if you reduce very slowly from about 7mg (what is called a physiological dose, about the same amount as the body makes naturally) your body is able to catch up bit by bit but not always - were you so tired while you were reducing from 5mg down to zero before the flare? How long did it take you for that last 5 mg?

The other point is that if you have had a flare after stopping the pred, the autoimmune disorder that causes the symptoms we call PMR is obviously either still active or active again, it is difficult to tell which. Autoimmune disorders typically cause extreme fatigue so it isn't surprising you feel like you do. And I do have to wonder - what are you doing in your fitness programme? Maybe it is now too much for you with active PMR. In PMR our muscles become intolerant of exercise - what you would normally perceive as a small amount is now like running a marathon for your unwell muscles. Think back to the beginning of PMR and how little you were able to do - the 2mg you are taking may be enough to calm down the pain and stiffness but not give you any pred boost.

How early do you take your pred? Many people find taking it very early, a couple of hours before getting up for the day, means they are better able to get going then. It is difficult to tell whether the fatigue is the lack of morning cortisol or the PMR fatigue - or both. If it continues to be a problem ask your GP to consider arranging a synacthen or ACTH stimulation test to see if your adrenal glands are still able to function, sometimes they don't ever wake up properly and you require replacement therapy - in the form of pred!

Perhaps cutting down on the level of exercise a bit might help - or at least pace it a bit better, doing it in much smaller bites. And have a read of this - it applies so much to life with any chronic illness.

butyoudontlooksick.com/arti...

[or01ah in reply to PMRpro]

Hello and thanks for the quick reply. I lowered my dose very gradually and was on half a mg for months. I was exercising two to three times a week. I have had the morning fatigue ever since being on prednisilone I would say. I think I will take your advice on the test. I have energy the rest of the day but very tired after a week's work and recently have been craving sugar.

[PMRpro Ambassador in reply to or01ah]

You aren't the first person to say that they had been on a very low dose for ages, stopped and soon afterwards the PMR returned. Doctors will tell you such a low dose can't be doing anything - they are wrong it appears!

[Nap1]

Yes mornings are tough. I need hours before I can get going. I can't blame sluggish adrenals because I'm on 35 ml of pred. But after a 3 year bought of PMR I never recovered my morning energy. Then a year later came down with GCA. At first I couldn't sleep and then sleep came back but so did fatigue. If I try real hard I can get out by 11AM. I do have an active adult community life. It just starts later than most. Happy holiday to you and all that read this reply. Take your time. Everything can wait.