As I understand, the body normally produces approximately the equivalent of 7 mg of prednisone daily. Also, taking prednisone suppresses the body's production where the adrenals quit producing any. If someone is taking around 7 mg of prednisone shouldn't there be relatively few side effects since it is really just the same as what a healthy person would have circulating in their systems?
Ah, but it isn't quite the same. The body produces, as I understand it, a suite of various chemicals, whereas prednisone is just the one, and artificial at that, Imagine a single note sounded on one insturment, then compare that with a symphonic chord! You'll still get the melody, but all the nuances will be lost.
If only it were that simple! My ESR reading fell from 67 to 15 and my doc reduced my Pred dose from 15mg to 10mg daily.withour tapering - I have been in agony ever since with pain in my left leg.and thigh. he said that It was not neceesary to taper the dose. I have just had another blood test to see if the ESR reading has shot back up again.I think that if the dose is drastically reduced as mine has been then the body needs time to catch up and produce the necessary cortisol to supplement the lower Pred dose. (That is only my theory).
Very interesting analogy.
I still don't get it Anhaga, it's the Predisolone that's causing the side effects... Am I being dense? I'm nearly at 5
Sorry! I was cut off in my prime.... I am almost at 5mg and still have most of my side effects, including my dopey brain...
It isn't necessary to taper with other illnesses where pred is used. PMR isn't other illnesses...
However - this isn't to do with cortisol - you are still on enough pred to keep you above the point where it is needed. This is the result of reducing in too big a step and very probably to too low a dose to manage the inflammation in your body. Trouble is - your ESR may not rise again while you are on some pred, it doesn't always.
I would be on the look out for a more empathetic doctor.
And I'd possibly seek the advice of a physio, sport massage therapist or Bowen therapist - because it was them who kept me upright with similar problems with PMR that wasn't managed at all with pred. I had myofascial pain syndrome, spasmed muscles were trapping and irritating the sciatic nerve. It is often found alongside PMR. It is worth a try.
Sorry that you have one of those doctors that doesn't seem to know
a lot about PMR..... I have one of those also. You absolutely have
to taper slowly...as just about everyone on this forum will attest to.
Thankfully for me my doc came around to letting me deal with
the tapering. I get sed rate done and it's always okay but I still
have pain. I'm trying to get down from 20mg a day but having
a difficult time doing so. Keep telling your doc about your pain.
Most of the others are still produced when you are taking pred, only ACTH and cortisol production is affected. It is a different matter with other causes of adrenal insufficiency when everything is affected.
Google nadf us secondary adrenal insufficiency for a good explanation. It also underlines the need for a SLOW taper.
PS the body doesn't care whether it is a artificial or not - it isn't that fussy.
I think, and stand to be corrected, that when you are at 10 the body will not produce the extra cortisol needed to deal with pain caused by your drastic 33% reduction. If it's pred withdrawal it should go away eventually, but you are just as likely to still be needing a slightly higher dose to deal with any residual inflammation you had. The blood markers are a useful tool but they should never override symptoms. I think you haven't been on pred very long, is that right? If you have only been on pred for a few days, up to two weeks, withdrawal shouldn't be much of an issue. Longer than that you need to taper. Returning pain could be the confirmation your doctor is looking for as that's what should, unfortunately, happen if you have active PMR.
Have you been alerted to the dead slow nearly stop reduction plan? Google those words plus healthunlocked and you will find it.
Depends on the person - and most of the side effects will be left over from higher doses when you get down there. Actually, I have had few side effects even with 15mg with the current form of steroid I'm on - none I can see/measure at least.
It is claimed that even low doses (3mg or so) can lead to loss of bone density - how they can be so sure is beyond me. Fewer than half of patients on longterm pred develop reduced bone density. Many people develop reduced bone density anyway - if you didn't check pre-pred you have no control for that person.
But yes - theoretically there shouldn't be much in the way of side effects from very low doses.
At 10 you don't generally need extra cortisol - there is enough corticosteroid circulating to not trigger any production of ACTH and hence cortisol. It is only in the case of severe trauma that your body might need more, not day to day functioning. Returning PMR pain isn't really in that sort of league.
The dead slow reduction is in the replies part of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Apparently prednisone can still interfere with osteoblast (bone) function as low as 2.5 mg. It could be lower, they just haven't researched any lower than that. So if the osteoblasts are being affected, no doubt other things are. In my case I'm feeling a lot weaker physically, and having increasingly disturbing heart palpitations at the low dose of 3. Because I'm not experiencing much PMR pain and have full range of motion, I'm very slowly reducing to 2.5. At this point I think I have to pay attention to things like fatigue and weakness as much as earlier I was paying attention to pain. It's a bit of a catch-22 as I agree it's the pred causing the symptoms, but to wean more quickly would almost certainly make things worse. I know I still have PMR, although seemingly very well controlled, but these other effects are concerning. Earlier I dealt with increased ocular pressure, nearly to glaucoma level, and elevated blood sugar, nearly diabetic, but those side effects went away a while ago, probably as I got to 7 and lower. These other issues are more recent. As Eileen says, I'm older now than when I started this journey, but you wouldn't think that fourteen months on pred at mostly lower levels would have aged me this much. But it has. Perhaps it can be attributed to the fact that my adrenals and the other affected hormone-producing organs have not really kicked in fully yet. It could take years before things are back to whatever my normal should be by then, PMR or no PMR. It really is past time that the causes of all these immune disorders were researched so that we could avoid the powerful treatments. What if it turns out to be something as simple as imbalance in the microbiome coupled with some sort of nutritional deficiency? People suffered with ulcers and milky bland diets for decades before it was discovered that h pylori is responsible for the vast majority of ulcers. Medical history is littered with diseases which eventually were found to have nutrition or "germs" as the cause.
I just wrote a very long reply to Sheilamac which has been sent for moderation. But I did read one of those research articles, or perhaps it was a summary, which described prednisone still having an effect on the osteoblasts at the 2.5 level, and in that article stating that they did not know if these effects continued at lower doses as they didn't research lower.
Okay, that's interesting. I'm sure I read early on that one of the problems with prednisone is it is just a single thing and the body is much more complex. But I'm sure I could never find that reference again, so bow to your expertise! So what DOES explain the continuation of side effects at very low levels? I seem to have been completely thrown off kilter.
It seems to be there Anhaga. thank you. my side effects are the less serious ones of weight gain, moon face and brain fog. The fatigue is a nuisance but a lot of that will be my lazy adrenals.
I've read about it too - doesn't alter the fact I'm less than convinced about the claims.
That could be due to all sorts of things - including the PMR itself. I think too that you have a very naive view of medical research and how it is done to obtain valid and meaningful results! "What if it turns out to be something as simple as..." is not anywhere near as simple to study as you think.
In a couple of months I may have a better idea about what prednisone does to bones. On the other hand it appears that sarcoid granulomas can contribute to high vitamin D, bone thinning and low iron, all of which I have, so maybe not. And in reference to your comment about my naivete re research, that may be so, but I prefer to think of it as sheer speculation. The obvious often escapes us humans. Things are easy once we know....
The research may not be easy, but once discovered the solution may be simple. Like washing hands, sneezing into the crook of one's elbow, drinking citrus juices....