Fatigue beyond tiredness

I feel exhausted all the time too. I just sit down and I fall asleep. 

I think it must be the prednisone that causes it. 

Hi, I know how you feel... I'm now on MTX and Preds and the fatigue is unreal... I nodded off at my kitchen sink last week lol  I get B12 shots and take may supplements , but not a lot helping at the moment: I hope it gets better for you : Best Wishes 

dHEA has been mentioned in PMR research appears for Pmr.   Who 80% min have low levels Dhea, which relieves fatigue. .  I recently found out I have Pmr.  And am fatigued

If I were you I would try 7 or mg for several days and see if it helps. If it does you have the answer. If it does not help, then you can go back to 5.5 or 6 mg directly, as long as you have not stayed on higher dose longer then week to 10 days.

Hi eddylynn, sorry to hear of your rough journey. I am at 7.5 tapering to 7 using DSNS method I am PMR pain free and push myself to stay active. Today a 19.5 mile bicycle ride up and down the hills of Los Alamos NM. Tomorrow busy working in my wood shop. Do I get tired, yes but I don't let myself stop I keep pushing, if and when I have a flare I increase my Prednisone, I tell my Rheumy after the fact. I think she now lets me manage my Prednisone and has stop rushing me and trying to get me to take another drug. I know it is difficult, we all have problems, I am a diabetic in my 55 years of battling that condition with it's side effects, neuropathy. I have a pain, is it PMR, did I do something to cause the pain, does over the counter pain pills help or is my neuropathy. We have to learn listen to our bodies. A year ago when I was in a wheelchair I started to feel sorry for myself, people on the forum EileenH and others got me moving. Little by little is started walking, yes some days it hurt and I was tired did want to keep going, but I did. The past 7 or 8 months have almost normal, I take my meds by the handfuls and keep going. I have a very active, positive life and try to keep smiling.

Good luck on the rest of your journey. ??

Hi, I sympathise completely with you with the fatigue, it's dreadful, you never think your body can get so tired! You've been on a long journey with PMR and obviously know how to manage it, with its ups and downs. I'm not an expert not any means, they'll be along, but I do know as you get to 5mg and lower, your adrenals start to try to kick start themselves into action and this can cause sickening fatigue. As your adrenals have been supported for so long with pred, they could be having an almighty hard time trying to kick start themselves. So, in answer to your question should you go back up to 7 or 8, I would say yes, if you want to relieve the fatigue and you could stay there i guess, however if you want to reduce again you may come up against this again. You could go back up for a time and then start the DSNS method and so by reducing incredibly slowly see if it make a difference to the fatigue as you get to 5 or below. It does work incredibly well for so many on this journey. Wishing you all the best, Hope it settles for you😊

Last year I had the sickening fatigue at 5 mg. too--too exhausted literally to turn off the light at bedtime, too fatigued to pull the blankets over me.  I just lay there until my husband took care of me.  I was using the dsns method to get to 5 but just couldn't tolerate the fatigue (and bouts of crying) so I went back to up to 7 and started the dsns method again.  Now I'm back at 5 once more; I have occasional fatigue, but not the bone crushing kind that I had before.  This time its late in the day, just too darn tired to do one more thing, have to sit down, wiped out,  very low energy.  I'm gonna stay at 5 mg for awhile, see if anything improves before trying to reduce to 4 1/2.  Wishing us both luck!

 

The fatigue is almost certainly the lack of adrenal function - and since the remedy for that is supplemental steroids, going back to 7 or 8 would probably sort that out pretty well. You are very lucky in your rheumy - keep a hold of her!!!

Before you go back up though I would ask if you can have a synacthen (ACTH stimulation) test to see if your adrenal glands are CAPABLE of producing cortisol. If they aren't that answers the question about dose pretty finally - if they are, maybe you would need to drop from the last dose you didn't feel fatigued at even more slowly. Sometimes it is justyour body taking a long time to catch up and I know a few people who have dropped to a lower dose, had the deadly fatigue and gone back, waited a few months and tried again - it worked eventually. But if your adrenal glands CAN'T make cortisol it won't matter how slowly you go, it won't happen.

It isn't just the deadly fatigue stopping you functioning - very low cortisol levels are potentially life-threatening, especially in an emergency situation or severe infection/illness when your body should be producing more to help your body cope. So it is worth asking for a bit of investigation - it isn't a difficult test. And at present most doctors would feel it was a low enough dose to do the test.