Pmr fatigue upon reducing prednisone
Posted , 9 users are following.
ive had pmr for 2 years and am at 6 mg prednisone. been there for almost 2 months, getting ready to start 5 1/2 mg using dsns method.
i read on another forum that when you get to the lower doses, you shouldnt do split dose because you want your adrenals to learn to function without the benefit of the evening dose. (split dose wasnt making a big difference for me painwise anyway). so a couple weeks ago i stopped split dose. well! the fatigue is mind boggling, to say the least. i would say that my adrenals are definitely noticing the change from split dose to full dose.
here is my question: do i proceed with dsns to 5 1/2 mg pred or do i stay at 6 mg until the fatigue lifts, which ive read could take many months? i had planned to stay at 5 mg for several months (whenever i get there) but am unsure how to proceed now. thank you.
0 likes, 12 replies
nick67069 Twopies
Posted
If you had more success with split dose, why not go back to it? For me late evening dose did much more then early morning, so for example at the moment I take 5mg - 4mg at 1AM and 1mg with breakfast at 9am. If I were to take single dose, I would need 6 or 7mg in the morning.
Your second question is about taper... If you are having fatigue, then whatever dose you are on now is probably too low ( or you did not realize that split dose was working better then single). In any case I would not try taper I was in your shoes.
Anhaga Twopies
Posted
I disagree with Nick. If otherwise PMR symptoms are under control a very slow continued taper will do more to stimulate adrenals to step up to the plate. It's possible that the split dose has indeed discouraged adrenal recovery. Why not try a very gradual shift of your evening dose to the morning, rather than an overnight change?
Twopies Anhaga
Posted
to both anhaga and nick: the thought of the inevitable is what prompted my question...if you are going to have fatigue sooner or later, then shouldnt you just continue on? going from split dose to full dose seems to have prompted the fatigue which goes along with what some pmr patients were getting at--their rheumies were telling them at lower doses, they shouldnt do split dose.
anhaga, what might a gradual shift look like?
i got to almost 5 1/2 this summer but felt sick all the time so went back to 6 for a couple months. as a pmr patient, i seldom if ever feel well. i am able to discriminate between pmr pain where i need to increase a little and regular soreness and stiffness that never goes away. hope this makes sense.
duke87801 Twopies
Posted
four years to get to 5mg. when i realized that i was feeling bad most of the time anyway,I reduced using the slow method no matter the discomfort and reduceded 12mg as fast as i could or should.
as soon as im "stable" the Dr is going to change the type of steroid to hydrocortisone so they can unmask what the adrenals are up to. Im hopeful all this will keep pmr heading in the right direction.
good luck keep youre chin up@
Anhaga Twopies
Posted
You know, if you are feeling sick at that level I think your doctor should be sending you for a synacthen test to make sure your adrenals really can kick in as you taper. I certainly have had my share of deathly fatigue, but no more than that and have been quite well (if lazy) at around 2 mg for over two years.
If you start to move all your dose to one time I think people who are tapering commonly reduce the evening dose over time. But in your case you'd be slowly moving by .5 mg or so from evening to morning. Kind of a variation of dead slow nearly stop. You'd be moving the time by tiny increments, not tapering. Just a suggestion, and I don't think you should attempt it until it's established that it's safe for you to do so.
Anhaga
Posted
I mean moving the time of the evening dose (or the morning dose if that works better for you).
Twopies Anhaga
Posted
thank you. what i was trying to say is that im NEVER well since ive had pmr. whether its pmr or prednisone, im just not one of the lucky ones. all the usual side effects mentioned so often here. i never feel like my normal energetic self. some days are better than others but underneath im just not normal. not the fatigue ive had lately; just other things--brain fog, dizzy, bloated, stiffness in the morning, insomnia, etc etc. and not all at once and not every day.
they wont do the syncthaten test until im at 5 or lower.
i might try the gradual switch from split to all one dose--worth a try.
nick67069 Anhaga
Posted
It was my understanding that evening dose is to avoid if you take steroids for short time to avoid shutting down adrenals. For long term use it would not matter, because adrenals are already sleeping.
It is my personal experience that same dose in the evening is more effective then in the morning. For that reason, when I tapered I tend to reduce morning dose first I was down. Currently I am at 5mg -4 in the evening and 1 in the morning. When I was at 6mg or 7mg, I still took 4mg in the evening and the rest of the dose in the morning. I do know that if I tried to flip and take less in the evening and more in the morning I would need higher total dose of pred per day- I tried it.
nick67069 duke87801
Posted
it is misconception that reducing pred will forced PMR in the right direction. Pred only manages symptoms and does not cure PMR. If you lower your dose below the level that is needed to manage PMR inflammation, eventually that inflammation will accumulate and result in a flare. If you have discomfort immediately after reduction and that goes away after a week or so, then it is steroids withdrawal. If the discomfort does not go away and becomes stronger, then you have reduced too far too soon and the best is to go back to previous known good dose and try reduction at later time.
Silver49 Twopies
Posted
I recognise what you are saying, Twopies. It's not the fatigue but all the other add-ons. I had 4 hours sleep the other night and managed to get through yesterday with grandchildren staying and cooking for extra numbers. I was tired but no more so than I would expect to be on that amount of sleep. I'm dropping to 2.5 at present and I think I may be ready this time. I am definitely less sore than usual and I think that's because I'm on the go so much more with the children staying. Sitting is definitely not helpful for the pain and stiffness (for me) so a new regime after they go home...........not that I am in the habit of sitting for long. I have never split the dose so don't know how to approach reduction with a split dose. Best wishes for a successful lowering of the pred.
Anhaga nick67069
Posted
I wonder if the variation people find is related to the speed or efficiency with which individuals metabolize pred? Eileen has pointed out that some people find pred lasts all day, others find they need more part way through the twenty-four hours in order to achieve effective symptom control. In this, as everything, we're all different and can only share our own experiences in case it happens to help someone else solve a problem they've encountered.
EileenH Twopies
Posted
Did you switch from split dose to single dose from one day to the next? That is quite a shock to the system! You could try going back to split and then tapering the night time dose slowly while increasing the other dose at the same rate.
If you were intending staying at 5mg for some time - what is the problem with doing that at 6mg? Everyone is different and maybe you need just a smidgeon more. Many people don't feel "right" as long as the underlying cause of PMR is active - your body is under attack as if it were an invading virus and that makes you feel unwell if nothing else. Other people need more rest, some feel better with exercise. You have to experiment a bit. Yes I know that doesn't sound very helpful - but that is the way it is.