My pred experience scares me.

[sferios]

I really need some help understanding what's going on in my body.

In late April I had been at 25 mg for a while with mild PMR-like symptoms. Then, one day all my symptoms went away after I made a big positive life change.

I then tapered down to 6 mg over a three month period without any problems. (No need to tell me that was too fast. Just hear me out.)

All this time during the taper I was feeling totally fine. No symptoms at all except some mild arthritic-type paid for a fays in my hands and feet each time I dropped the dose. But that always went away. I never had any muscular or PMR-like pain during this taper.

However, once I hit 5 mg I started getting major fatigue, headaches, depression, a strange nausea 24-7, and diarrhea multiple times a day. I learned that these were adrenal insufficiency or low cortisol symptoms. So I waited two weeks to see if they would go away. They didn't.

I then went up to 9 mg for about a week. But nothing got better.

So I went up to 15 mg , and a week later still I was not feeling better.

Then I went up to 20 mg and after a few days I finally started feeling better.

During this entire experience I never had any muscular symptoms whatsoever.

I only started getting muscle aches later, what I was back up at 15 mg, and then 20. My rheumatologist believes that this is most likely prednisone myalgia, not PMR activity.

The other thing that happened when I went back up to 20 mg on the pred is that I began experiencing severe psychological and cognitive symptoms. They were so bad I sought professional help. I couldn't think straight. I had mania and delusions. I could not get basic tasks done. It felt like I had dementia. I couldn't even read. I love reading but I would read a sentence over and over and not be able to understand what it said. I could not concentrate on anything.

For the first time in my life, I had suicidal thoughts. I saw a therapist but I could barely participate in the sessions due to the cognitive difficulties.

After two weeks like this, I made the decision to go back down on the pred. Despite all the advice from everyone here to taper slowly, I could not live with these side effects. So on August 20th, I began a taper again.

I am now down to 6.5 mg (alternating 7 and 6 each day) and I am feeling so much better. The muscle aches have gone away. The cognitive and psychological problems are gone. I feel like myself again.

I have my first appointment with an endocrinologist in two weeks on October 25, and I do not plan on tapering anymore until then. (Remember my problems began last time only when I hit 5 mg).

Now that you've heard my story, here are my questions...

1. Why did my adrenals not come back online after waiting two weeks at 5 mg (I was feeling fine at 6 mg)?

2. Why did I have to go all the way back up to 20 mg before the adrenal insufficiency symptoms went away, when I was fine at 6 mg before they started (and feel fine now at 6.5)?

3. Why did I suffer such extreme psychological and emotional problems at 20 mg when I went back up after my first taper down to 5 mg, when I did not experience them previously before the taper? (I had been averaging 30 mg since January?)

4. Has anyone experienced anything like this? Why did it happen?

5. When and how should I start my next taper? I'm afraid to go below 6 or 6.5 mg now given what happen last time, because I never want to go back up that high on pred ever again. I really was contemplating ending my life the side effects were so bad.

Thank you for any help you can offer.

[SheffieldJane]

I cannot answer your understandable questions and wanted to express my concern for the horribly challenging time you have had. I have long been aware of the rare possibility of psychotic symptoms as a side effect of Pred, I have never had them explained so eloquently. It must have been terrifying. I sincerely hope that you can find a wise doctor to answer your questions, I am just not sure what their specialism should be. Psychiatry perhaps, but they would have to be experienced and have in depth knowledge of drug induced psychosis and preferably be able to work in collaboration with a good endocrinologist . Wishing you well with this unusual situation, I hope sn explanation and a remedy is found.

[Twopies]

I had a similar experience but mine was at the beginning on the higher doses of pred, I thought I was going into shock…couldn’t breathe, couldn’t talk, thought I was going to collapse. Went to er where they found: nothing. Concluded I was a whacko nut except for one doc (I’m assuming a resident) who said to me: “prednisone drives some people nuts, it’s one of the unfortunate side effects.” My reaction unlike yours was short lived but it was due to the pred—I’m very medication intolerant. I hope I never have to go up again. Best wishes to you, stay well.

[DorsetLady PMRGCAuk volunteer]

Hi,

Adrenal function - It doesn’t work quite as simply as that… after you’ve been on Pred for a few weeks above the average dose of cortisol your body usually produces, your adrenals go to sleep, so when you reduce Pred and get back down to that level, they need to wake up again. They don’t just switch on - you need to taper slowly to allow them get working again …and whilst you may have been okay on 6mg the drop down by another mg was obviously too much.

Can’t really say why you needed to go so high - nor why you suffered so much - unfortunately Pred affects patients very differently, and have to say your reaction does appear to be extreme.

Would suggest you stay on the dose you are on until your appointment with the Endo on 25th… and hopefully as they are the expert in adrenal issues they will steer you in the right direction in relation to that.

Do hope you can soon get the answers you require, and that you begin to feel better physically and mentally.

[sferios in reply to DorsetLady]

Hi DL,

Could dropping from 6 mg to 5 mg been such a big drop that my adrenals would not be able to make up the difference for two whole weeks? I did not think that they would come back online entirely ("switch on). But I thought that two weeks would be enough time for them to make up the difference.

[DorsetLady PMRGCAuk volunteer in reply to sferios]

In the terms of adrenals - 1mg can make a big difference - took me 8-9 month to decrease 3mg successfully... some people even longer. which is why we always advise patients once they get to around 7 or 8mg to take reducing very slowly - in time and dose.

Your normal production of cortisol is roughly equivalent to between 5 to 10mg of Pred [varies from person to person] -so once in single figure you need to gently nudge your adrenals to pick up the difference between your Pred dose and your normal cortisol level...the more you reduce Pred the harder your adrenals need to work.

[sferios in reply to DorsetLady]

I always thought the super slow taper advice was to prevent a flare, since it can take weeks for the inflammation to build up. I did not know that it is also to allow time for adrenals to ramp up. All the articles I remember reading here seem to imply that that happens within a week (e.g., "wait a week to distinguish between a flare and a temporary adrenal insufficiency.")

This is the first time I'm hearing (or understanding) that slow tapering is *also* needed because it might take longer than a week for the adrenals to upgrade after dropping the dose.

Is it also true that it might take weeks or months before you start to feel the effects of low cortisol after dropping your dose?

[DorsetLady PMRGCAuk volunteer in reply to sferios]

e.g., "wait a week to distinguish between a flare and a temporary adrenal insufficiency.")

You are confusing things - that refers to a flare versus steroid withdrawal -and can happen at any dose. Adrenal insufficiency does not occur until you are at much lower doses as I explained.

..and as I said the adrenals take months to get up to speed…

[sferios in reply to DorsetLady]

Boing! Ok I get it now. Thank you.

[sferios in reply to DorsetLady]

Hi DL,

Now that I understand the difference between pred withdrawal and adrenal insufficiency at the lower doses, I have some questions . . .

1. If I start feeling adrenal insufficiency symptoms from a small pred reduction (say, from 6 mg to 5.5 mg) how far should I go back up on the pred, and for how long, before dropping back down to 6 mg?

This is assuming no PMR symptoms.

2. How bad do the adrenal insufficiency symptoms need to be for me to do this? (Like obviously some fatigue is to be expected, right? And so I shouldn't just jump back up at the first sign of fatigue.)

3. Related to #2, how long do I wait if I experience some adrenal fatigue symptoms before making the decision to jump back up?

Thank you

[Ridge in reply to sferios]

It helps if you think in terms of percentage. If 6mg is 100% then 5mg is a big drop. I haven’t done the sum but it is around 80%. 20% is a big drop in medication or support for the adrenals. You would be better off doing the dead slow method with half a mg teasing the adrenals awake!

I’m trying that way after past confusing failure. I have got a bit stuck on 4.5mg due to an add on illness! Treading water at the moment. Good luck.

[Caleb85 in reply to Ridge]

Good point (percentage not dose)

I'm fine at 7 possibly 6 but 5 and I become really ill, but no PMR symptoms.

Blessings

John

[Ridge in reply to Caleb85]

That sounds like adrenals

[Francesbarbara in reply to Ridge]

Since getting to 5mg I decided that percentages were really important, so dropped by 0.25 instead of 0.5. With a pill cutter it is not a problem to cut a 1mg pill into four and I have now got down to 2mg. Yes, it is very slow but so far it is working. Tortoise and hare comes to mind....

[Ridge in reply to Francesbarbara]

Good idea! I’ll go for that too.

[Purple-Owl in reply to Francesbarbara]

I would have to be a very nimble fingered tortoise to cut a 1mg prednisolone tablet into 4! I have a pill cutter but even halving a tiny 1mg tablet crumbles it into powder.

[DorsetLady PMRGCAuk volunteer in reply to Purple-Owl]

In that case then if you are having issues, may need to lengthen any slow taper you embark upon - so repeat every stage…more than one way to approach things…😊

[Francesbarbara in reply to Purple-Owl]

I'm obviously just lucky that the pills I am prescribed don't crumble. I live in Scotland and the Prednisolone is manufactured by 'ACCORD' of Barnstaple.

[readingbooks in reply to Purple-Owl]

Just make sure your pill cutter has a sharp cutting edge, mine has a razor blade, and you should have no trouble cutting 1 mgs into 1/2 or 1/4 mgs. Works for me !

[Purple-Owl in reply to readingbooks]

I am beginning to wonder if others have larger 1mg prednisolone tablets. Mine are 7 millimeters in diameter. NHS issue in UK manufactured by Alamus.

[DorsetLady PMRGCAuk volunteer in reply to Purple-Owl]

Could well be..if so follow my advise above - reposted here - healthunlocked.com/pmrgcauk...

[Gossiplady in reply to Purple-Owl]

Hi Purple-Owl! Buy a new pill cutter . I can cut 1mg pills without any bother. Keep smiling.

[Sharitone in reply to Purple-Owl]

It is easier to cut some brands than others. The ones which are flat are much less likely to crumble than the horrible convex ones, which also wobble as you try to cut them. Shame you can't choose!

[PMRpro Ambassador in reply to Sharitone]

Sometimes the convex ones break perfectly if you place them on a hard surface and press with your thumbs on opposite sides.

[DorsetLady PMRGCAuk volunteer in reply to sferios]

If you are having adrenal insufficiency issues you shouldn’t be increasing the dose - otherwise you will never give them a chance to start working…. Which is why you need to work out what is adrenal related and what are symptoms of your illness flaring.

It a matter of time, very small reductions, using a slow tapering regime that we talk about a lot on here, resting if you feel fatigued -and patience.

As I said earlier, just stuck to current dose for now and discuss adrenal issues with Endo .

There are posts in the FAQs on adrenals and tapering plans which may be beneficial for you to read …

[PMRpro Ambassador in reply to sferios]

If you have no PMR symptoms then it is best to stay at that slightly too low dose - then you know that your body is being challenged to produce a top-up of cortisol. It doesn't happen immediately and the ONLY way to get it to happen is to stay at that slightly too low dose and accommodate the restriction of fatigue etc. SnazzyD has written reams about her months of fatigue and just ticking over. Everyone is different but you can't rush it and there are no magic potions, just time and patience. If you go to a higher dose of pred, there is no incentive for the body to produce its own and you will never get to a low dose of pred, never mind off altogether.

It is NOT adrenal fatigue - the adrenals are not "tired", the boiler isn't worn out, The dose of pred you are at is high enough for the HPA axis to know there is enough present, it knows too much corticosteroid is not good, so it produces no more. Think the central heating boiler and the wood burning stove in the room with the thermostat - it registers it is warm enough while the wood is burning (the outside contribution, the pred). Only as the wood contribution falls away does the thermostat poke the central heating to take over producing warmth, the internal contribution, the cortisol.

[SnazzyD in reply to sferios]

I did everything possible not to go up the dose ladder because one is just telling the adrenal axis not to bother each time because the Pred has it covered. My first action I I felt unwell was inaction. If I felt unwell I rested with a vengeance to try to avoid having a crisis while showing my body it was short on cortisol. For months my life was like living like a shadow but my system got the message. If I had a better day, I would do a bit more but I tried to avoid payback the next day. I was dropping by 0.5mg, introducing it over anything from 6-14 weeks from 7mg. The lower I got the slower I got, rather looking at it as a % as others have just suggested. For the first 18 months after stopping Pred, I could still be caught out by unusual and sustained stress on the body. I only raised my Pred if I had the full house of feeling like I was in peril, faint, diarrhoea and then it would be a rescue dose of 1-2mg as a one off and bed rest for the rest of the day. Debatably I left it a bit late before action.

[PMRpro Ambassador in reply to SnazzyD]

I assume you meant 6-14 WEEKS rather than days?

[Hunter134 in reply to sferios]

Getting the adrenals to work can take a year from what I've read on here.

[Happybubbles in reply to Hunter134]

And in some cases, even longer. The key to remember is that the human body is a biological system with huge variability (rather than a mechanical or engineering system which can be predicted and controlled).

[DorsetLady PMRGCAuk volunteer in reply to Hunter134]

..and that's after you've come off the Pred...

[Boss302Fan in reply to sferios]

Adrenals to wake in a week? Do you know for some it can take a year?! And other they don’t at all. Do you remember me stating I reduced to zero using 10% reductions, l eventually using 0.25mg steps and I got to zero without any more flares NOR AI symptoms? The reason for the 5+ week taper and using not more than 10% reductions was mainly for preventing AI. I had no control over PMR activity, only keeping up with it. But I did have control of how I nudged my adrenals. I tried to follow your process but now I’m so confused I have no clue. I do think getting an Endocrinologist involved is a wise decision and suggest not making anymore changes until can see him (or her) unless you have some other bad side-effect and in that case call them for direction. Hopefully they can get you back to some stable condition and restart a plan and stick to it. Your right, you did reduce too fast.

[sferios in reply to Boss302Fan]

Hi Boss,

You say: "Adrenals to wake in a week? Do you know for some it can take a year?!"

I didn't mean fully awake. I meant awake enough to produce enough cortisol go cover 1 mg of pred equivalent (the difference between 6 mg to 5 mg).

Clearly two weeks wasn't long enough.

In my post I was asking if something was unusual about my case, because I was expecting to be able to go from 6 mg (where I was feeling fine) to 5 mg without that much difficulty. When I asked, "why did they not come back online," I was assuming that going from 6 to 5 mg was the point at which they would *start* making cortisol. Not fully. But to begin the process.

Now I realize that 1 mg at that level of pred is a *huge* drop, and I had wrong expectations about the rate at which the adrenals can start their work. (Also, perhaps they started to come back online when I was at 6 mg. I don't know. I just learned that going from 6 to 5 is too large a drop for my adrenals to make up the difference in just two weeks.)

Anyway, this forum has helped me so much. I am so indebted.

[jls93]

Yup... Makes sense to me.. Contextually I've had to reference many of my similar symptoms as expressions of complex metabolic effects. I agree. when I ( we) are in these states that you have candidly and eloquently Xpressed, is very unsettling and distressing. Especially the first few times... Not fun at all. Pursue your health by all means.

When I happened to speak in confidence with folks like us who have walked similar paths (only two so far beyond this forum) it provided me a reassuring context which helps me alot.

Admittedly even this small pool and I have have our own particular circumstances and do not dwell on the horrible unsettling periods.

My particular processing involves three tennents: Spirit, Mind and Body or emotional, mental and physical (etc).

Thank goodness for me, that I have a better than average formal education on human physiology which is helpful for the mind and body. I pursue all three daily. Emotions/spirit have their own means of cultivation and growth in my situation. Meaning; "Knowledge of the path,is not a substitute for walking it".

My appologies if I sound high minded or preachy, however we know mother nature is not a trifle. You can do it! ;-D. My short story is: " I have a host of orthopedic issues wrapped up in some metabolic problems " I'm moving through. (Chuckle)

Hope this is both helpful /informative. Blessings and good juju to you. Sincerely jeff

Hang in there.

[PMRpro Ambassador]

1, It doesn't happen overnight - it CAN takes weeks to catch up.

But really, since we don't have crystal balls I don't think we can answer your other questions - I'm not even sure an endocrinologist could answer them for sure. We did warn you about the speed you reduced the dose, for very good reasons. Your body must be totally confused with the swinging around of the dose.

[Sueloucam]

You have been through a terrifying experience and thoroughly understand how scared you feel. I had a manic episode when on high dose pred, my brain was foggy and I struggled to think clearly. I was a consultant nurse in an inpatient unit so felt it was impacting my ability to do my job (I did eventually, after 4 years retire). The opposite end of trying to get below 3mg again nearly had me going to the hospital, I was extremely fatigued, could not eat, vomiting and felt very nauseas. As a nurse I have seen 1st hand steroid induced psychosis and it is a scared condition, resolved by reducing the steroids (very strong steroids), I could not see the manic behaviour in myself, it my professional colleagues pointed out how I was behaving, a very scared feeling. Listen to your body and I would stay at your present dose as advised above. Once I understood the withdrawal from pred symptoms as opposed to adrenal insufficiency systems, I did plough ahead, but Estes when I needed to. To get so low in such a short time is amazing! Take care and look after your self.

[Quintius]

I was on a similar speedy tapering proces - doctors advice/orders. It was all very well until I hit 5mg. Then I was knocked out by fatigue, dementia-feeling, couldn't read etc, but no muscle pain. Like you I had to raise my dose of prednisone step by step. I ended up being on 25 mg. I can relate to your feeling of mania at a high dose, but I never had the sense of mania in a clinical sense, i.e. loss of self control.

[Zebedee44]

You know already that your rollercoaster use of pred was ill advised and you have suffered the consequences in a bad way, now you really must really listen to the advice here and more importantly to your body.

I don’t know how you came to think that the adrenal glands can get their act together in two weeks when they have been redundant since you started pred. It has been much discussed and bemoaned here in this forum and many of us are having a horrid time at or below 5mg with just the symptoms you describe. This is the stage where you have to tough it out and taper very very slowly. There doesn’t seem to be anything that can relieve the symptoms, it’s just a process your body has to go through to return to normal. Slow and sure wins the race!

[Gimme]

I can't add anything useful to what other people have already said, but you do describe very eloquently the psych symptoms that I experienced at higher doses. All I can add is some solidarity and say that your experience is not unknown. At and above 10 mg, I am exactly the same. As I live alone, there is no-one here to stop me from doing something very final and I really do believe that I was a danger to myself and anyone around me. My friend saw me and threatened to take my car keys away as she said that I was high as a kite. It made me insane and it was unbearable, so I was forced to come down rather quickly after only a couple of weeks on 15mg and then again after a week on 10 mg. The madness doesn't go away for me until I get below 7mg. Fortunately, I seem to have full control of pain and stiffness at 6mg. It all comes back at 5mg and after many weeks on 5mg, the fatigue was still crippling. Some days I barely had enough energy to get washed and dressed. Luckily, no GI symptoms though. I have cPTSD, which doesn't help and the pred psychosis feels exactly like my PTSD would if permanently triggered, and the PTSD made me suicidal until I learned how to manage it. Unfortunately, those techniques do not work with the pred reaction.

I have a visit to South America coming up in a couple of weeks and I have gone back up to 6mg to make sure that I can get through it. I booked it before I got really sick and I am determined to go, as it will likely be my last big birding trip. I'm too cowardly to tell the GP that I have bunked up the dosage until I get back, after I got such a chewing from the grumpy rheumatologist (dubbed Mr Dodgy Crystal Balls by Pmrpro ) and have had to raid my emergency stash of 1mg tablets. The GP and rheumatologist want me off pred altogether, but I am postponing that negotiation until after I get back home next month.

[Viveka]

I have a weird thing that when I go up steroid doses I feel ill (physical not psychological symptoms). The clearest example is when I had a clear GCA flare at 7mg following 3rd covid vaccine. I tried going up to ten, but after a few days I started feeling terrible - like bad flu symptoms without the infection. When reducing, I had felt fine on ten. My consultant (who is v well thought of in UK) had me gradually up to 30mg, feeling worse and worse. When 30 didn't help he got me down quickly back to 10. He couldn't account for it other than it was the impact of pred increase. It happened again when I developed PMR at 3. I went up to 8 and felt the terrible flu like thing, so stuck it out on 5 for several months until luckily the aches stopped.

So ... sometimes pred can do weird things is my message.

You're feeling better. Hoorah! Take it very slowly and don't rock the boat I would say. The important thing is to be able to function ok.

[montebello]

Thank you for posting this. It has generated a wealth of useful comments for all of us.

[G-Jo in reply to montebello]

Agree with you, montebello! I’ve read all comments twice and this entire discussion has been helpful. Thank you everyone for your wise insights.

[SandraLinks]

I had the exact symptoms you had, only I had been on methylprednisolone with a severe case of PMR for 3 years. I was down to 4 mg. When I lost so much weight I had to see the endocrinologist. They started reducing my methylprednisolone immediately, at a very slow rate, but added hydrocortisone. I’m now off of methylprednisolone, and just on hydrocortisone. Hydrocortisone doesn’t stay in your system as long. I’m also starting to reduce the hydrocortisone, but am having some of the same symptoms again. I’m pretty sure it will be a “bumpy ride” to get down, but it has to be done.