Pmr and fatigue--when to reduce?
Posted , 12 users are following.
I started pred for pmr in Sept. 2016. I've been at 6 mg pred for the past month, having inceased from 5 due to increasing soreness and stiffness in my oelvic girdle, thighs, etc. its been a rough summer with my allergies and recovery from last winters endless bronchitis. per my previous post, i have developed mind numbing fatigue--always present, sometimes its the deathly fatigue where i cant function at all. seems odd because i thought that going up on the prednisone would preclude fatigue or at least mitigate it, but i was wrong. i also thought that the fatigue started mostly around 5 and lower, that was wrong too.
here is my question: having been at 6 mg pred for a month, should i try to reduce to 5 1/2 mg. or stay st 6? ive read both sides--some have said they were would go ahead and reduce because the fatigue would be present anyway, others have said they didnt reduce while experiencing it. what do you all think? thank you.
0 likes, 26 replies
EileenH Twopies
Posted
Did you have similar fatigue at 5mg? Though the signs were that 5mg was not enough last time you were on it or the PMR symptoms wouldn't have come back. When the fatigue starts varies - for some people it is at even higher doses than 5mg and others never feel it even though it turns out their adrenal function is poor.
But with fatigue like that that didn't improve going up the dose, I'd ask the GP to check some things out - it isn't always PMR to blame.
Twopies EileenH
Posted
i had a complete physical may 31st. bloodwork was perfect. vit d and b12 best theyve been in quite a while. b12 in the 500s. everything else excellent, which is why im thinking pmr/adrenal route.
EileenH Twopies
Posted
Just asked on another reply - has your GP checked adrenal function with a synacthen test?
Amanda4567 EileenH
Posted
About 7 weeks ago husband George reduced down to 6 .25 Pred, and has been on that dose since.
He's tired, often sits down. He's irritable. But, he can walk for 20 minutes with a rest in the middle, and can do things for a little while slowly in the garden.
From what I described does it sound as if his adrenal glands are working again do you think? I thought they kicked back in around 7mg..
He wants to try reducing now to 5.5. Does this sound ok?
EileenH Amanda4567
Posted
They start - but don't return to full time work and top form all at once. As long as you are taking some pred they only produce enough cortisol to top up the pred dose to the level the body requires to function. If it is new that he is tired and irritable that suggests that they are still very much in the adjustment stage and in fact it can take as long as a year AFTER you stop pred altogether for them to really get reliably into the swing again.
If he has no PMR symptoms there is no reason not to try another reductions- just remember he shouldn't feel worse PMR-wise than he did at the beginning of a taper and that adrenal function is probably still going to be unreliable for some time to come. One top PMR rheumy in the UK likes to keep patients at 5mg for up to 9 months once they are there - it is a low dose and doing little or no harm but the marking time seems to help the rest of the journey for many patients. If he gets more tired he has to decide whether to put up with the fatigue or not. One lady says she felt awful from 7mg down to 5mg and then suddenly felt much better at 5mg.
Amanda4567 EileenH
Posted
Thank you, Eileen. This is George himself. And thank you for all your input over the last few months. I appear to be doing fine. I'm down to six mg of predisonol now, after the slight hiccup with Betamatasone. I'm not feeling a bit irritated.
Utaker Twopies
Posted
My husband is on 16.5 right now but he has gained weight with the Prednisone, especially in the neck and face and also around his waist. Due to the gain, his snoring is so bad i have to sleep in another room. My cousin is a nurse and she suggested a sleep study for sleep apnea. Our doctor is registering us for Novasom, you do it at home for three nights. she said all three of her brothers did it and went on cpap machines and their fatigue during the day is gone they weren't getting enough oxygen. They don't have pmr but one has very severe rheumatoid arthritis and is on many very strong meds and he said he feels like a new man now. All three said they thought that they slept fairly well before with maybe mild snoring but they can't get over their return of energy all day long now. my husband even has trouble driving because he is so tired. i am anxious for him to get this study done.
Guest Twopies
Posted
As others have suggested your fatigue may be a complication caused by sleep apnea, which might also explain the bronchitis. I have sleep apnea and have developed bronchitis because the only comfortable position I can usually sleep in is flat on my back. This is the worst position for apnea and encourages snoring and back aspiration into the bronchial tubes. Something worth exploring with your GP. People who have tried the mask have told me the change in energy is amazing.
Twopies Guest
Posted
Thanks. i dont snore. the bronchitis: I wintered in a senior community where lots of people came down with bronchitis and passed it around--a nasty kind that developed for some into hospitalization due to complications. mine turned into a burst eardrum and severe ear infections that left me almost deaf for 3 months and really whacked out and weak physically; my hearing is almost normal now. i dont think sleep apnea is causing my fatigue. im a side sleeper, too.
and i do recover from the atigue after a 10 minute or so rest, so i think its pred-adrenal related. using dsns i got to 5 mg pred in march and planned to stay there for many months. however, a month ago i had to go back to 6 because 5 just wasnt cutting it. ive had fatigue in and off throughout--definitely worse at the lower doses, but more frequently now.
EileenH Twopies
Posted
Has your doctor checked your adrenal function with a synacthen test?
Twopies EileenH
Posted
no. he wont at 6 mg pred
peggy_56092 Twopies
Posted
I will have had PMR for 4 years end of Sep. I have never been below 6 mgs. I was there for over a year and then last year I had to briefly up it to 15 for a flare. I have been at 6 mgs for about two months now and don't think I will reduce any further because my legs feel terribly heavy when walking the dog every morning. It's like my blood flow is clogged. It gets better with rest or later in the day after more activity. I am assuming the PMR is still there.
Twopies peggy_56092
Posted
i know exactly what you mean. exactly. im 3 years end of september. the pmr doesnt seem to be going anywhere.
Utaker Twopies
Posted
you dont really need to be a snorer per se, it is just lapses in breathing
Twopies Utaker
Posted
yes, i know, its just that fatigue seems to be part and parcel of pmr and reducing pred. what i intended to ask is, sorry if i wasnt clear: for those of you out there who have had fatigue upon reducing, did you stay at your current dosage or did you continue to reduce in spite of the fatigue. certainly my own fatigue is worse at the lower doses which i expected. the really bad bad fatigue that i had a few days ago that prompted this post in the first place is better than it was. peggy_56092 said she is staying at 6. ive been at 6 for a month now, was wondering whether i dare start to decrease or is the fatigue a sign that i need to stay where i am? seems ive read pros and cons both ways. thank you.
EileenH Twopies
Posted
I would try a reduction - but slow it all down, stay at a dose more than just a month for example and do just 1/2mg at a time. You will probably find you are knocked out each time until your body catches up.
One top PMR rheumy in the UK keeps patients at 5mg for up to 9 months once they get there - and finds the rest of the taper usually goes much better as a result. OTOH, if you can get to 4 or even 3mg before the fatigue gets too much, that would be a better place to rest while the adrenals get their act together.
Twopies EileenH
Posted
thanks eileen! so go to 5 1/2 doing the dsns (83 days, i believe) and then stay there for a couple months before trying the next reduction, right? and so on and so forth thereafter?
EileenH Twopies
Posted
Depends on how you feel at the end of the 1/2mg drop - maybe you will feel OK, then you could work on the next 1/2mg. It's all about listening to your body, Maybe the adrenal glands have got the idea of what you want them to do - lots of people say they get to a dose and suddenly the fatigue doesn't appear. One says she was desperately fatigued from 6 down to 3mg, could barely drag herself along. Then suddenly, as she got to 3mg, it was like a switch flicking and she felt fine.
Twopies EileenH
Posted
gotcha. thank you
Michdonn Twopies
Posted
Twopies, my fatigue started at 6 mg with no PMR pain. I been reducing .5 mg modified 38 day DSNS method since, normal DSNS is 52 days. Now on 4.5 mg tapering to 4, almost there. I am starting to feel less fatigued, but still not right. I try to push myself every to keep active and busy, but still steal a nap some days. As always Twopies good luck on the rest of your PMR journey, remember stay positive and try to smile. 🙂
Twopies Michdonn
Posted
thanks...i remember your modified dsns plan. worth a try. and i remember that your staying active is light years ahead of mine. glad to hear you are doing well.
Michdonn Twopies
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Yes, Twopies I doing okay. I had a few flares, but found getting on them quickly works. I will be on 4 this week and will stay there for 1 week before dropping to 3.5. Still feeling a bit sluggish, body taking it time waking up, but better this
week than last and that's the really all that counts. Stay positive!🙂