Fatigue, dizziness, brain fog, & depression wit... - PMRGCAuk

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Fatigue, dizziness, brain fog, & depression with Prednisone taper.

SMH4CRNA profile image
60 Replies

Recently decreased pred to 5mg. Rarely had the stated side effects at higher doses. I would have thought the lower the prednisone dose less side effects. On Saturday my brain was in a fog so much so I could not finish sentences. Slept on average 12-14 hours per day. Holding back tears and trying not bawl through out the day.

Update: seen endocrinologist last week. Wants me to continue to taper, but slow down due low grade fevers. Don't want confuse underlying disease symptoms from prednisone withdraw. Although, thought low grade fever was a prednisone withdraw symptoms, hmmm. PET scan scheduled for Friday. Last three days feel worse than I have felt in months. This feels different than PMR symptoms I felt prior to starting prednisone.

Wanted to provide update. Will continue the plan to taper. This is truly life altering. Is there a light at the end of the tunnel?

60 Replies
piglette profile image
piglette

Do you think you are on too low a dose of steroids?

SMH4CRNA profile image
SMH4CRNA in reply to piglette

Per Rheumatologist and Endocrinologist, No. Im not feeling the same PMR symptoms as I did previously. Inflammatory markers are on the decline. Unless, symptoms change in nature, i would belive these are withdraw symptoms. Do you agree?

piglette profile image
piglette in reply to SMH4CRNA

Withdrawal from the steroids? These should last a maximum of a week, probably a lot less.

SMH4CRNA profile image
SMH4CRNA in reply to piglette

It appears these symptoms may be from adrenal insufficiency versus withdraw from prednisone. The symptoms are similar, but extreme. Specially when it comes to the dizziness, fatigue and depression. I'll be staying at 5mg for a bit. I'll have the PET scan on Friday. Will not be making any changes until after for sure.

piglette profile image
piglette in reply to SMH4CRNA

That is possible. I had bad adrenal symptoms at around 5mg of steroids.

Sharitone profile image
Sharitone in reply to SMH4CRNA

Sounds good. I too was disappointed when side effects didn't improve as I hoped, particularly fatigue. If ever I start feeling dizzy, I take it as a warning sign that I have reduced too far, or at least should stay at that dose for a while. I really don't want to risk ending up in the ER!

PMRpro profile image
PMRproAmbassador in reply to Sharitone

Not a recommended pastime ;)

PMRpro profile image
PMRproAmbassador

Absolutely typical signs of adrenal function not keeping up with the change to a lower dose of pred. That is different from steroid withdrawal in that it happens at low doses of pred once you are into the physiological range. Steroid withdrawal is just due to your body missing its usual dose of pred so can happen at any dose if the reduction step is too big, the body will usually accept smaller changes.

One of the rules we often mention is "the lower the slower" - from about 7mg the body may need to start to produce its own cortisol to top up the pred dose which is now below what the body needs for optimal function. Again - small changes in dose are easier to adjust to. And it doesn't happen overnight - the adrenal function resuming is not like a light-switch, there are many factors that have to adjust and get into the right balance. It takes time.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

All of the things in your heading can be attributed to adrenals not working as they should…and the only way to nudge them into doing that is slow (sometimes very slow) tapering as suggested by Endo and patience….

This link gives bit more info on them -healthunlocked.com/pmrgcauk...

..and yes there is light at the end of the tunnel - just a bit on the dim side at the moment .. hang on in there, things will get better.

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

wow, those are the symptoms im feeling. I reduced from 8 to 7mg and felt two days of symptoms. Not bad in retrospect. 6 to 5mg OMG!!!! This has been going on for a week. My engine is puttering to say the least. Ive also refrained from saying i went from a split dose to taking prednisone once per day. The split dose worked well at higher doses, but i figured i would go back to once per day as soon as i hit 5mg. The only discrepancy in the article versus the endocrinologist is that he stated 5mg was the equivalent to endogenous cortisol. He also stated no need to lab test for cortisol levels since prednisone is long acting. The results of the lab would be non-inclusive to determine true level.

Ok, ill be standing fast until my adrenals clicks in. How long you think?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

sorry going to go with the pat answer -everyone is different!

For me (having had GCA, so much higher doses and on longer than you) -about 8months whilst on a very slow taper from 6mg down to 3mg…but they may not be fully functioning for up to a year after stopping Pred.

We quote 7.5mg as average figure -physiological level can vary between 10mg to 5mg -again on individual.

Many won’t check for adrenals ability to function until you’ve reached 3mg.

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

Huh? Prednisone is medium-acting - about 24 hours (12-36 hours if you are being picky). Dexamethasone is long acting, hydrocortisone is short-acting. There are experienced endos who know how to interpret the cortisol levels while a patient is on pred - would there were a few more around!

SMH4CRNA profile image
SMH4CRNA in reply to PMRpro

Don't know, just stating what he said when I asked about labs. He did state switching from prednisone to hydrocortisone would provide a more accurate picture if choosing test for cortisol. He also gave the same duration for prednisone as you stated. I speculate, he simply was giving his recommendations for the most accurate information at 5mg. Yes, love decadron. I give dex in my blocks to prolong its duration up to 72 hours when done right.

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

I don't think the switching to HC makes that much difference - particularly since researchers at Imperial College in London have postulated that as little as 2mg pred is enough to substitute or natural cortisol. It is all very unclear and every patient is different. And HC really doesn't replace pred in PMR. If it definitely isn't PMR and all you are doing is getting off pred it would make sense to switch to HC - but it has adverse effects too and some people find them worse than pred.

tangocharlie profile image
tangocharlie in reply to PMRpro

That's food for thought. years ago I switched from Pred to HC because of adrenal problems that surfaced going below 5mg. I felt really rough and one of the reasons was that the PMR hadn't gone away and was still active. It never occured to me that part of the problem could have been side effects of HC.

OldPenny profile image
OldPenny in reply to SMH4CRNA

"The split dose worked well at higher doses, but i figured i would go back to once per day as soon as i hit 5mg. "

Could you please explain why you want to end the split dosing. Is it best to keep it to one daily dose in the morning when down to 5mg?

I have been splitting my dose successfully (2.5mg before bed; 6mg after breakfast currently) and would be interested in your reply. Is it beneficial while slowly tapering through the 'adrenal zone'? Any thoughts anyone?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to OldPenny

This post relates to activating adrenals whilst reducing Pred, the original info comes from another organisation dealing with a different autoimmune illness, but also treated with steroids -

healthunlocked.com/pmrgcauk...

OldPenny profile image
OldPenny in reply to DorsetLady

Thanks, DL. I've read this useful post before about the adrenal glands but it doesn't really answer the question why the common advice is to take one dose in the morning. 🤔

PMRpro profile image
PMRproAmbassador in reply to OldPenny

There is an opinion that taking pred before bed reduces the ability of the body to adjust adrenal function to produce cortisol itself. The trigger for cortisol to be produced is a low level of corticosteroid at about midnight which signals to the body, via the HPA axis (hypothalamus, pituitary, adrenal combination of glands and substances), that cortisol is required in the early morning. Taking pred before bed MAY mean this trigger isn't activated. In that case the end of splitting OR taking any pred at or after midnight is preferable.

OldPenny profile image
OldPenny in reply to PMRpro

Thanks, Pro, for the reply and possible explanation. I suppose that I will just have to experiment and take the consequences. I'm still doing a DSNS from 8.5mg at present but will report back with any useful information in the months to come. Thanks again. OP

PMRpro profile image
PMRproAmbassador in reply to OldPenny

I don't think I would worry until considerably lower - 5mg or even less. Whatever level you are at, if the antiinflammatory effect of the pred isn't lasting the full 24 hours then you have to extend it somehow and that is the usual reason for splitting. Sometimes it works if you take the bulk of the dose in the morning and the rest later enough in the day to push it out to the next dose. That might be lunchtime or mid-afternoon for many - and that dose will almost all be out of the system by midnight.

PMRpro profile image
PMRproAmbassador in reply to PMRpro

Just to add: all drugs have a half life - the time it takes for half of the original dose to be removed from the body. It takes 5-5 half lives to get to effectively zero in the body. The half life of pred is 3-4 hours so it takes between 17 and 22 hours for all the pred to be eliminated from the body. The sooner in the day you can take it - the less there will be by bedtime and the less likely it is to interfere with sleep - or later, with triggering adrenal function. Prednisolone is probably out of the body a bit faster as it is in use quicker since it doesn't have to be processed by the liver.

OldPenny profile image
OldPenny in reply to PMRpro

My reaction to things is normally slow (ask my wife), so pred may linger on a bit longer for me 😁

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Thanks..

So is this comment from the link - original from CSS/EGPA page -REDUCING STEROIDS WHILE ON A LOW DOSE & ACTIVATING THE ADRENAL GLANDS - By Marian Mesker - October 2006 misleading -

“Take your steroids at the same time each day, since cortisol levels in the body rise and fall during the day. They are high in early morning and lower in the evening (lowest at midnight). The best time is to take them in the morning, around 8 a.m., to correspond with the body's clock release of cortisol.”

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I wish they'd think about that claim! If you don't take prednisone until 8am, it takes about 2 hours to reach a peak in the body (about an hour to be absorbed and an hour to pass through the liver and be processed to prednisolone) and be effective, so about 10am. To coincide with the cortisol peak you need to take it sooner than that. And in fact, the peak varies from person to person, occurring at the point they regularly wake up - not a specific time irrespective of sleeping/waking habits, That's why shift working messes things up.

It is described nicely and reasonably simply in the Abstract here:

ncbi.nlm.nih.gov/pmc/articl...

I wake at 7am or so - even without an alarm. I'd say most of my neighbours are heading off to work then - not just waking up! A peak of cortisol at 8am has missed the bus - and as for 10am ...

Taking all the pred dose at 2am which is optima for most PMR/RA patients is also optimal for returning adrenal function - zero at midnight so the production of cortisol is unaffected and pred plus cortisol in the early morning, which MAY reduce the amount of pred you need,

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

it is an old study…perhaps it has been reviewed, will have to have a browse….

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Doesn't matter though does it - it is what is said by many doctors, when you take your pred doesn't matter in lots of things - but it does in PMR if all your pain and disability is in the morning. Take the pred at 8-9am as they often recommend and you've lost most of the day haven't you?

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

Hence, i decided to stop split dose to normalize my cycle. Wanted to mimic normality as much as possible to allow body naturally to wake up. Ill just take it slower.

Dydee profile image
Dydee in reply to PMRpro

Oh wow, so I have been doing it wrong for nearly 3 years. LOL I stay up till 11:00 so I can take it as late as possible before bed. My sleep has never been affected. But I sure would like to know I'm doing the best I can to get my adrenals going again. I am down to 6.5 mg of Pred. currently. Did get down to 6 but shoulders started hurting again and after a few days of that popped back up to 7mg for a few days then back down to 6.5. I plan to be there for 30 days and taper very slowly again to 6. Problem isn't just adrenals, but it also messes with my eye pressure (glaucoma) and other lab readings.

Good news is I have been having shortness of breath and at 80 sure want to know what that is all about. An angiogram showed no blockages in my heart and xray showed lungs are fine. Pulmonary function test shed light on my problem, asthma. Now they want to put me on inhalers with steroids. Don't think I want to add that to my Pred. problems.

SMH4CRNA profile image
SMH4CRNA in reply to Dydee

Dont know if there is a right way. The right way is what works for you.

My wife never had issues with asthma until recently. Now she has a PFT scheduled and taking MDIs. All followed after being diagnosed with COVID over a month ago.

Ill be staying on 5mg myself for a bit. Not messing with the adrenal insufficiency. Fortunately, no PMR symptoms, so need to increase dose.

I admire you and your persistence to stay up late to take meds how you feel it works best, bravo.

in reply to SMH4CRNA

"Dont know if there is a right way. The right way is what works for you."

Brilliant ... I did it every way imaginable. I took prednisone for 20 years before PMR was diagnosed and then another 13 years after PMR was diagnosed. I adapted to what worked the best for me and the condition being treated. I had several autoimmune conditions and each one seemed to respond differently based on how much prednisone I took and when I took my dose. My tapering schedule was also different for each flare and it depended on what flared.

There was a lot of guesswork involved!!!

I learned enough to know there wasn't a single correct way of doing things. Inflammation doesn't even behave the same way and it depended on the condition. Different conditions caused pain at different times.

Uveitis is one condition that allowed me to actually see inflammation. It was like a dense fog with a variety of different floaters. It could happen in the middle of the day, overnight or anytime it pleased. Those inflammatory substances could be released at anytime during the day. There was no rhyme nor reason for what triggered the eye inflammation.

My ophthalmologist usually asked me how soon I could get to the clinic whenever I reported uveitis. Invariably he wanted me to start with 60 mg of prednisone and I was supposed to take it immediately. Usually he would hand me prednisone before leaving in case there was a delay with filling the prescription.

Dydee profile image
Dydee in reply to SMH4CRNA

LOL Thank you. I figure that's as close to midnight as I can go. I too had Covid but a little over 2 years ago so the original one that struck. Left me with tremors so who knows what else. Don't know how long I had PMR but went to doc for 9 months before I found PMR on the internet and he agreed with MY diagnosis. Starting off on 40mg and tapering to 10 the day before I came down with Covid is probably what kept me from getting it very bad.

Bowred profile image
Bowred in reply to Dydee

hi I am on inhalers for my asthma I have no problem with inhalers and being on steroids so you you should be fine

Dydee profile image
Dydee in reply to Bowred

It's just that Prednisone is already keeping my eye pressure up and the warnings on the inhaler say it is safe if you have well controlled eye pressure, which I don't. Currently on a new type of eye drop hoping it will help.

Thank you for sharing though!

AyJayBass profile image
AyJayBass in reply to Bowred

Ditto

PMRpro profile image
PMRproAmbassador in reply to Dydee

I don't think you can say you have been doing it wrong - above 7mg pred per day it probably makes no difference at all to adrenals and if it worked for YOU , it was right. You slept OK and were good to go in the morning - what more could you want!

The steroid inhalers for asthma are targeted - although some is absorbed through the lungs, it is a quite low. If you need them, you need them. Simple. QOL is all as you get older.

Dydee profile image
Dydee in reply to PMRpro

I didn't think about it that way but you are right. So now that I am at 6.5mg Pred. I should start taking it in early morning? If I don't have to stay up till 11 I could get up at 7 and take it?

PMRpro profile image
PMRproAmbassador in reply to Dydee

Try it and see if it works for you - no point if it doesn't! If it doesn't give you a good morning, sometimes taking most of it early morning and the rest a bit later will make the effect last the full 24 hours.

Dydee profile image
Dydee in reply to PMRpro

Thank You!! I will give it a try. Really looking forward to getting off of it, or at least down to really small doses.

PMRpro profile image
PMRproAmbassador in reply to Dydee

Everyone does - but don't try to force things. It still takes time and we often say "the lower, the slower ..."

Dydee profile image
Dydee in reply to PMRpro

Yes, that has stuck in my brain for sure. I add the half mg lower dose once a week for a couple weeks, then twice a week, etc. Took me awhile to get below 8mg because I'd have a slight flare and have to go back up for a bit. So glad I've gotten this far and will continue to go ssllllooooooowwww 😀

tangocharlie profile image
tangocharlie in reply to Dydee

I get breathnig problems if I'm on too low a dose of seroids (I know because increasing the dose sorts it out again). I've had just about every test possible done on heart and lungs and everything is fine. I don't have asthma. All I can think of is somehow PMR inflames my respiratory system in some way. I tried steroid inhalers - they did nothing. Montelukast might have helped a bit, it was hard to tell, but the side effect was horrible depression so I stopped it. Keep pressing for answers

Dydee profile image
Dydee in reply to tangocharlie

Thank You so much. I certainly will press for answers. My pulmonary function test showed I breath IN just fine but my exhale is less than desirable. Before I try the inhaler, I ordered a lung exerciser called an Air Physio. I noticed after the breathing treatment they did during the test that a lot of congestion broke loose. This little tool helps break that up and strengthens the lungs. I only tried it for a minute this morning and it broke more congestion loose. Fingers crossed. I think I've been a bit better since. I don't have a BIG breathing problem, just enough to be inconvenient.

SMH4CRNA profile image
SMH4CRNA in reply to Dydee

Ok, it appears your PFT showed a FEV1 and FEV/FVC < 70%. This would explain an expiratory outflow problem. In other words, it is more difficult to breath out than to breath in. How long have you had a productive (congestion) cough? Have you been treated for pneumonia or do you have emphysema? Makes sense steroids help your breathing issue if chronic.

Dydee profile image
Dydee in reply to SMH4CRNA

No, not chronic. No emphysema. I have never smoked and had always been very active, working out, walking hard, climbing ladders to paint, prune trees, etc. LOL I have never had a cough, and now only very occasionally cough up a bit of mucous. Several years ago I sanded the wood floors in our laundry room and a pantry. I didn't see any particles in the air so didn't wear a mask. Stupid I know. A few days later I really suffered. Real breathing issues. My doc suggested Mullein leaf tea (great for lungs) so I have had it every day for 12 to 14 years. Gradually things got back to normal and only the past couple years have seen a return of slight breathing issues, unless I really exert myself, then worse of course. I have always been a very shallow breather, all my life so maybe my poor lungs just didn't get enough exercise???

SMH4CRNA profile image
SMH4CRNA in reply to Dydee

That is great news you dont have anything chronic, and this can be overcome. I can imagine the Air Physio device will asist you back to health.

Raewynne profile image
Raewynne

Yes I felt the same

Decreased to 4.5.Terrible reaction.I went back to 5mg and Im staying there for a little while as there are a lot of stressful things happening in my life at present.I noticed the depression too.Very annoying.because I know its not me.

SMH4CRNA profile image
SMH4CRNA in reply to Raewynne

I felt ok this AM. Than I took 5mg, OMG. Now, the nausea, dizziness and brain fog is back. This is all prednisone. This is horrible.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

Sorry to hear that…..think you need to discuss with your doctors. How long after taking your meds before you feel rotten and how long does it last?

Perhaps you should consider returning splitting dose if you felt better with that regime. It may not be as good for awakening your adrenals, but if you feel better in yourself then maybe that’s the choice you have to make.

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

good idea. Seems like everytime i take the prednison i feel horrible. I would have thought if its adrenal insuffiency i would feel better with the prednisone. Sunday ill go to 2mg in day and 2mg at night.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

okay -it’s worth a try splitting dose, if the full amount is giving you so much grief….hope it works 😊

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

Has that always been the case? Have you changed the brand of pred at any point?

SMH4CRNA profile image
SMH4CRNA in reply to PMRpro

no change at all. Felt fatigue with taper. Never nausea, dizziness and fatigue as bad as today. Only occured after i took the medication today. Perhaps taking it shut down the adrenals.

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

No, that doesn't happen that fast. Might be coincidence - does happen.

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

1-2 hours after taking at 0800. Lasts most of the day.

Irishfurbaby profile image
Irishfurbaby

Hi sorry to read about your symptons. Have you tried any natural supplements that may assist you during your tapering

I use Turmic and a huge dose of B12 and fish oil. This has helped me.

Good luck do not give up there is a light at the end of the tunnel. I have been off now for 2 yrs but still lack energy and keep taking the supplements and go wallking and to a gym.

Karenjaninaz profile image
Karenjaninaz

S, at those low doses I tapered by 1/4 mgm. Sounds like secondary adrenal insufficiency; there is no way to speed this up. It will take time for your adrenals to “wake up”. Pushing it at this level results in poor qol and result in adrenal crisis. Five mgm is not a high dose. I wished I were there again.

Bcol profile image
Bcol

Just to add what has worked for me, almost since starting Pred. I take mine around 02:00/03:00 and I have had no real problems in getting through the day and no real sleep worries either. Since being on 4.0mg and tapering to 3.5mg I have noticed being more tired in the afternoons, which I think is my Adrenals not being quite there yet, but nothing that's not copeable with. I'm tapering 0.5mg every five weeks but will/do extend that time if I feel it's necessary.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bcol

would agree with your thoughts on adrenals….

SMH4CRNA profile image
SMH4CRNA

UPDATW: PET scan complete. Hope to know results soon. Decrease Pred further, feeling fine. Will keep you all updated.

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