Hi all, has anyone suffered a similar situation I am going through?
In the last probably 4 weeks I'm having amazing dreams and nightmares, practically every night. The strangest thing (bit hard to explain) they move really fast. When they wake me I don't want to go back to sleep, because they take me back there. Always wake up sweaty. I have not changed my bedtime routine. Only medicine change is back on water tablets as I was having breathing problems.
Two years on pred for GCA, now at 6.5mg
Just wonder if anyone else has had this?
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Strider68
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A few people have complained of nightmares at lower doses of pred and they can be associated with adrenal insufficiency. Have a look at the Related Posts and see what comes up.
Yes from time to time but I don't connect that to PMR or drugs. And even if so, they still are reflecting what isgoing on in our psyches in response to the stress of whatever kind.
Hi, yes, I too have been having the craziest, busiest dreams for several weeks and waking up soaking in sweat and still “in” the dream. They have been scarily realistic and fast moving, as you describe.
I am in the below 5mg stage that I have never been in before so I assume they are part of adrenal recovery. I recently introduced a small dose of amitriptyline for my piriformis pain and that seems to have given me better sleep.
Could be adrenal insufficiency - but also the Amitriptyline, that can cause vivid dreams even though you say it’s helping with sleep. Hope they recede as your body gets used to drug.
The small dose of Amitriptyline isn’t working on the pain or helping me sleep and now I think has brought on a UTI so I don’t think I will be continuing with it.
there is an interesting article in The Times today - 21/05/2024 - about dreams, nightmares and autoimmune diseases... research funded by the Lupus Trust found a link between dreams/nightmares, even disturbed sleep, and the onset of auto immune diseases, ... for the moment the conclusion seems to be to encourage more doctors to ask about nightmares and other unusual or new 'neuropsychiatric symptoms' 'to help detect the disease flares earlier'
I started having dreams spasmodically, or maybe it was just remembering them, when I got below about 7mg of Pred and they are still occurring now I'm at 1mg.
I've had bouts of terrible nightmares throughout my life that are PTSD and stress related, but last few years they had quietened down to very rare. When I was on 15 mg pred, they came back with a vengeance and I was waking up every night feeling terrified, heart racing and sweating and too afraid to go back to sleep. The nightmares felt like just having a PTSD trigger, which, given the nature of pred and my history is hardly surprising. They lessened as the dose reduced, and on 5 mg, it doesn't happen that often, although I am still having quite vivid dreams. I was below 4 mg earlier in the year and I was sleeping like a baby, the dreams were back to normal. It sounds like I am the reverse of you. The pred causes mine and it is dose related, one of the many reasons that I really would like to get off this stuff if I can, but I have to balance it against quality of life.
Yes. I’ve actually starting ‘acting’ in my nightmares. I find myself waking & doing whatever I was doing in the nightmare, it’s scary sometimes. My nightmares continue if I wake & go back to sleep. I was positive the tv was blaring all night & went downstairs at 3am…silence…but why did t I know it was silent from upstairs, or while I was walking. I remember most in detail in the morning, like the one where big lizards (I like lizards but not like this) burst out through my skin from inside me…like a personal horror movie. I hate going to bed & dread sleeping. I think, however, that mine are a side effect of a different drug, one that I was trying to help something else, as I didn’t suffer like this in four years of PMR. But it’s interesting as I’m on 2mg, so I’m open minded & it could be adrenal related. Waiting to discuss with Dr but I’m thinking of stopping the other drug due to other side effects. I had years on amitryptylline before this started, but now think I should consider that, too. Amitryptylline was prescribed to help my fibromyalgia. It does relax my muscles & help me get to sleep (as you can imagine I’m not too happy when I take them, either)!!
Yes. I'm at 11 mg and have weird dreams which I can remember. They do move rapidly and sometimes I go back into the same dream. Mostly about dead people I knew. Ugh. Soaking night sweats. I upped my Pred to 15 mg last night because I'm going thru a lot, plus now my daughter has to have surgery this aft. At the higher dose, no dreams or sweats. Just following the sick days rules for a bit as I have cataract surgery Thursday morning.
On the teen doses, I had vivid dreams. My dead brother, Danny, was always in them. To be honest, they didn't frighten me and it was lovely to see him again. He was much younger than me and had died of hepatitis c.
I am currently on 3mg Prednisone tapering from a beginning dose of 15mg at the start of my PMR diagnosis almost 2 years ago.
I definitely have a hard time falling asleep even though my body feels exhausted and when I do I have very vivid dreams often quite frightening that seem very real. Like you mentioned sometimes they even continue if I wake up and eventually fall back asleep. Most nights I can calm myself down just by telling myself this is nothing new but sometimes they are so vivid it takes a while to calm down enough to sleep again. I have always put it down to the medication and hope that it will get better when I get better!
Yes, nightmares nearly every night, usually wake me up between 4 & 5 am. Ever since starting pred, at high and low doses. The only way I have found to stop slipping back into the bad dream, as you mention, is to force myself to start reading, with a backlit kindle under the duvet, to avoid disturbing OH. Somehow it seems to reset something so there is a chance of going back to sleep. Otherwise I will definitely be awake the rest of the night. I used to think it was the pred, but now I wonder if it is more to do with the inflammation and the disappointment in the life changes PMR and GCA bring, that come to the fore when the conscious mind is not in control.
I had been fine sleeping with no issues, then the last few days have been having similar dreams that stay with me when I wake, and I go back into them if I try to get back off, although not waking sweaty .. I have been down to 8mg for a month and just about to start DL 5 week taper down to 7.5mg. Nothing changed in my life so not sure why they have suddenly started!
Could well be related to adrenals as you are in the zone where they need to buck up! It’s not 100% proven and there seem to be some discussion of subject, but this study states it may affect the REM part of sleep -
Okay… but nearly everybody gets notified of a new post whereas unless they saved it initially they don’t get a notification of replies later down the line. So if you ask a question, you may not get a reply - except from the author and PMRpro and me (as we save every post) .
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Adrenals or relapse
Prednisone and disturbing dreams.
Sulfasalazine or azathioprine
Feel like nearly 2 years waisted 
