And If you are on a very small dose of prednisone do your adrenals still release cortisol to maintain some sort of homeostasis in your system?
Does prednisone withdrawal symptoms signal your body to start making more cortisol to compensate (eventually), or does it do nothing?
I have noticed after drop to 5mg in the evening and 10 in the mornings, I have lot of aches in my knees in the AM, but that during the day I am about completely recovered by early afternoon.
This explains simply what happens when on steroids long term -
healthunlocked.com/pmrgcauk...
..but at 15mg daily it’s highly unlikely yours will be producing any cortisol
Another link covering same written by PMRpro -
We say that at roughly 7/8mg you are on the level where you are breaking even, though this is variable with different people. In some people when the level of Pred drops below this the adrenal axis does make up the difference. In many it doesn’t and the level of Pred needs to be consistently held at below the daily equivalent to trigger a response. For some this can take months of slow reductions to achieve this. If you are taking 15mg over the day, that should be well above the level of Pred that will suppress the adrenal axis so your aches and pains might be something else like breakthrough pain.
“Advances in the measurement of the total amount of cortisol produced in a day shows that this is around 5.7–7.4 mg/m2/day or 9.5–9.9 mg/day”. This comes from
ncbi.nlm.nih.gov/pmc/articl....
This shows a table of relative potency with Cortisol taken as 1 which shows it isn’t like for like with Pred and Cortisol. It is interesting to note the relative levels of adrenal axis suppression too.
ncbi.nlm.nih.gov/books/NBK2...
At what point then do you adrenals begin to produce cortisol again? Around 5 to 7 of prednisone? And really slow to pick up the longer you have been on prednisone. Breakthru pain an interesting concept in my case. Although it feels as I am slowly not needing as much prednisone. I know I tried to cut back to 15 a month ago, and it was impossible, as all the PMR symptomatic pains returned. But now they have not at 15. Other pain exists, like the knees which never had any pain till I started taking prednisone. I went thru a cycle where I was on 20 mg and built up a lot of knee pain but it would sometimes go away. And for a week before dropping from 20 to 15, had no knee pain. I still dont get it about the knee pain why it happened at all, it is not a PMR pain symptom.
Breakthrough pain is not to do with adrenal function and could be withdrawal as in the body’s general response, especially at high as 15mg (will stop adrenal function) and drops as large as 5mg. Any pain I had with low adrenal function as vague fluey aches that I couldn’t located particularly and this didn’t kick in until 7mg and under.
People’s adrenal function tends to differ and although we talk in numbers, it really isn’t as clear cut as that. I felt awful on 7mg but others have been happy at that level. As to how much people’s return to full function is affected by the length of time on Pred, that doesn’t seem to be totally predictable either, judging by people’s experiences here.
I still dont get it about the knee pain why it happened at all, it is not a PMR pain symptom
It is for a typical symptom for most people - see picture - you may not have had it initially, or maybe you were diagnosed before it had got too bad to be noticed.
As for cortisol - as it says in my link- normal production is 30mg of cortisol daily, but not necessarily at a constant level - goes up in stressful situations… this is roughly equivalent to 7.5mg Pred. But it varies from person to person - and it can be higher or lower than 7.5… between10mg or 5mg .
Your comment -
I know I tried to cut back to 15 a month ago, and it was impossible, as all the PMR symptomatic pains returned. But now they have not at 15.
Think that probably shows your PMR activity is less today than it was a month ago - which is good. … and is nothing to do with cortisol production… as I said earlier in thread at 15mg it’s highly unlikely your body is producing any whatsoever.
I think I have suggested before that dropping 5mg at a time is far too much - and it is dose changes like that that cause steroid withdrawal symptoms and that is far more likely the cause of aching knees. At 15mg that is about double the usual cortisol replacement therapy using pred so the adrenals will be producing no cortisol.
There are rarely symptoms of the adrenals actually producing cortisol - the point is that if they ARE producing cortisol to top up a dose of pred that is lower than the amount the body requires then there are no symptoms of deficit. In the process of the process recovering you may experience rushes or lack of corticosteroid if you are under sudden stress which might make you feel shaky in an emergency situation but rarely otherwise. So average cortisol production is less the problem - in an emergency the body usually produces a spike of cortisol which can be several times the average just to deal with the situation.
Had ZERO knee pain until a few weeks into taking 20 mg prednisone. And then it was sometimes gone away, and then sometimes came back. The pain came on very extreme. Mostly the pain feels like the joint is under pressure, painful to straighten all the way, or pull back tightly. It might go hours like that then subside, or it might be very slightly there in the morning and go away and feel great all day, but still feels tight when pulled up against the back of my thigh, like it just cannot pull in all the way and if forced it hurts. Today it feels good here at 10am, but around 5 am was hard to sit into a chair and get up.
So the prednisone of 20 did not help my knee pain. It seemed to make them start hurting.
Never had any knee problems my whole life till I started prednisone.
Still have no classic PMR shoulder - hip pain.
I have a 3:30pm PCP doc visit today. Will ask if he can give me 5mg pred pills, that would be easier to taper with.
We think you need 1mg tablets to taper with.
PCP refused to prescribe them when I asked a month ago.
Flat out said he will not.
Said use pill splitter. So was thinking if 5, then split to 2.5. I do see a Rheumatology specialist mid June for the first time. Maybe he will do that.
PCP obviously doesn’t understand Pred use in PMR/GCA -you cannot reduce in too big a step. 2.5mg would certainly be better than 5mg, but guidelines do say below 10mg reduce by 1mg a time -so you will need them then…
Suggest you show him this -especially the TREATMENT DURATION AND TAPERING section - although not saying I agree with duration quoted -
Good article there. I am sure the Rheumatologist who is an older guy with a lot more experience will agree with the info in that article. On April 26, I saw my endocrinologist for diabetes, and he is saying there must be something other than just prednisone to take, and the rheumy will know, he was not too happy with prednisone saying I need to reduce its use for my diabetes and insulin use. Only other drug I have heard is Methotrexate, which my PCP refused to prescribe, said it is a dangerous drug, but prednisone is also a dangerous drug. What I have been hoping for is to be able to take less prednisone, but maybe not add in an uncertain use of methotrexate. I don't want to actually feel even sicker. Just reducing from a 10 to a 5 pill has made a big difference to my insulin use.
Methotrexate likely has its own set of potential bad side effects too.
MTX does have its own issues for sure, but in UK it is up to Rheumy to prescribe it not GP [PCP in your case] … is it different in US?
I do , as he told me had prescribed it once to a cancer patient. But he won't for me as he is letting that be the decision of the rheumy.
Shows a degree of ignorance of its use there then - the doses used for oncology patients are FAR higher than the low level doses used in rheumatology.
When used as a chemo drug, methotrexate is given in medium to high doses. The dose is determined by the patient's size, the type of cancer being treated, and kidney function. Doses greater than or equal to 500 mg/m2 are considered high, while doses 50 to 500 mg/m2 are intermediate. 500 mg/m2 translates to a dose of 17mg/kg - a total for the average 75kg adult of 1,200 mg.
In rheumatology, the maximum dose used is 10-25mg once a week - a miniscule dose in comparison.
Think your PCP is in the wrong job!!! I fear that apart from Actemra there has been nothing else besides pred for PMR and even it isn't perfect but a new drug has been FDA approved in the last few months, sarilumab/Kevzara, which is also also approved for RA and they have experience with it. So you have the choice of 2 things, Actemra off-label for PMR and Kevzara which is approved. EVERYTHING has its own set of potential bad effects - including Tylenol and ibuprofen! Your PCP wouldn't use them on his basis!
PCP agreed to prescribe me 5mg prednisone pills. They can be split to create 2.5mg drops.
He was happy with me tolerating a 10 and 5 dose for now. He did say once you go to 10, you drop by 1. He wont prescribe Methotrexate, that is between me and the Rheumatologist in mid June. The lower I can go on prednisone the better for me, is my own thought. I was thinking of trying another drop in a week or so to 7.5 in the AM. I can always go back to 10 again.
He wants an Xray of my left knee to rule out typical arthritis. I don't believe it is RA or OA at all.
Knee's feel great at the moment, no shoulder, or hip pain. Wrists are excellent. I can pull my knees up all the way with no pain. Very odd how it is so painful in the early am. When I wake and get up at night, I can feel the knee pain developing.
Very odd how it is so painful in the early am.
Is that before or after you take your morning dose? And are you taking 5mg at night and 10mg in morning?
I take 10 in the early morning with cereal, I get up around 5am
I take the 5 in the late evening around 7:30 to 8pm always after dinner.
I am in bed around 9pm.
In the wee hours of the morn, like 1am I can begin to feel some knee pain and stiffness, and it gets progressively worse up till maybe 9 AM at the latest, then it can be almost gone by 10am. I have been taking 4 ibuprofens with breakfast, it really does help. If I take no ibuprofen, the knee pains will linger till perhaps noon or 1am. And somedays may not completely go away.
Hmm -don’t really like the fact you are taking ibuprofen regularly.
Can’t recall (sorry) but did you have same issue when you were on 20mg Pred?
Yes, knee pain came and went, sometimes none, sometimes was some, sometimes bad. This am have very little knee pain. So is random.
The timing isn't typical of PMR - could it be the way you are lying is upsetting the soft tissues around the knee? I develop quite a bit of knee discomfort overnight and I am pretty sure it is ligaments/tendons.
I’ve got bony knees, sleep on my side. I use a pillow between my knees for support. It might help if you’ve not tried it.
Not sleeping in a different position that I have done for years. I really think the knee pain is inflammation related to PMR, the left knee has hurt significantly more than the right, which also has similar pain just way lower, enough to notice and not really affect me. Now this am, the knee pain is non existent.
You stay awake all night to see how you lie? I find even a short time with my knee in the wrong position will start it hurting and I often wake to find it stiff and sore which eases once I change position and start to move about.
Being diabetic, I have to pee every couple of hours
I get up and goto bathroom, then I go lay down again. Also my PSA is normal at 2.15
I do not have a going problem. I make a lot of pee. My sleep is always interrupted, just the way things are.
But you sleep between times - you can't survive long without total sleep deprivation.
Always been a light sleeper, of course I sleep. I also used to work night shift in a medical lab running a lot of balky machines, the kinds of tests doctors order. Did that for decades. Got really tired of night shift and was no way off, so I quit years ago. Still I worked long enough to earn 2 pensions, Glaxo bought us, so I get a nice Glaxo-Smithkline pension, the other one though will be 3 times more money since I worked there many more years. I took one early, other I have to wait till full retirement age which is still 3 years away. Going to take SS this July at 64. So from mid 20's I really was never a normal working person's schedule. One of my main jobs was all the chemistry tests, ran chem profiles on thousands of patients every night. You might compare the experience to factory work, EXCEPT the day shift refused to pick up any of ours, we could leave them nothing. So let's say I always got overtime plus the night shift differential. But it was a tough job, and eventually wore on me. I was what they call a Medical Technologist, MT-ASCP. I was able to do most any test a doctor might order.
Is it arthritis? What to do....
Is it typical for people with GCA/PMR to have low cortisol well still taking 5mg of Prednisone?
Steroid Withdrawal at lower levels of Prednisone
Breaking Up is Hard to do......with Prednisone that is.
Still unclear about cortisol suppression
