At what pred dose do adrenal glands awaken!

I have surely experienced sustained bilateral fatigue, for the first time, at or just below 7 mg – and these symptoms slowly worsen. My question now is: will that fatigue vanish with 8 or 9 mg pred? If so, why stay at 7 mg and suffer?

Whether the fatigue is PMR or pred withdrawal matters to me because, if PMR is the sole cause, I can increase the pred dose at the first hint of bilateral fatigue.

If there is still disagreement amongst experts on natural cortisol levels, the Imperial Centre for Endocrinology seems to believe otherwise.

As for your average of 5.9 years for remission, I now know my mother had active PMR when she died at 87 years. What I don't know is when she was first diagnosed.

I am one who was completely flat at 7 mg. It was quite sudden and it took a long time before I started to feel normal again, although as time went by I got used to the "deathly fatigue". I also believe that had I decided to stay at 8 because I was fatigued at 7 I would probably still be at 8 as it it obvious from later experience that I still have PMR. Instead, nearly three years after I was first at 7 mg, I have spent most of the past two years somewhere around 2 mg. My energy level is much better than it was at 7, which was the worst stage. I can still sometimes get really really tired, but this is rare, and I recover with rest. I still have to pace myself and think at my advanced age I probably always will, even after I achieve pred zero.

Tapering to lower levels should help the adrenal glands to start producing natural cortisol again. Why would they ever bother, how could you ever hope to recover, if you stayed at a higher dose if you don't actually need that higher dose to control PMR pain?

If your fatigue at 7 mg was PMR rather than pred withdrawal, you'd surely have been better returning to 8 mg. If The Imperial Centre for Endocrinology is right, you just had PMR and could have tried a small taper every couple of months.

I kept on tapering at a rate of .5 mg every two weeks, using a modified DSNS taper, later only .5 per regular DSNS taper. I think if I'd had to listen to what The ICE was saying I'd have thrown up my hands in despair. I tapered slowly and successfully. I had never previously felt fatigue from PMR.

Tapering just below 7 mg, what led you to believe your "deathly fatigue" was not simply a PMR flare? I gather pain from a flare or pred withdrawl are almost indistinguishable.

I wish I was down to 2 mg.

In the short-term possibly but steroid withdrawal pain occurs immediately you change the dose and then improves over the following couple of weeks. If you only change the dose a small amount it is far less likely to happen. Pain due to a flare, on the other hand, tends not to manifest for at least some time and then steadily deteriorates over the following time.

Much the same applies for the fatigue - fatigue symptoms due to adrenal function lagging behind won't generally happen in a week or so unless you have dropped a fair bit but then it will get steadily worse over time.

I didn't have any PMR symptoms as I knew them at that time. As I said I had never previously had fatigue from PMR and at 7 mg I had no pain. It seems like you want me to say it was PMR but how do you explain that I was able to continue tapering successfully to around 2 mg without PMR pain returning?

In my case, after three unsuccessful attempts to taper 0.5 mg or less from 7 mg in six months, I now speculate as follows.

At 7 mg, I am at or marginally below the minimum pred dose for my PMR. Even the smallest dose reduction, immediately shows as a flare that is clearly worsening a week later.

If so, why has the minimum PMR dose I need not dropped in the six months? If anything, that dose is slowly rising. Is this common?

Dropping from 9 mg to 8 mg, the past 6 days, I feel rather better.

Ah. You had no pain!

That is certainly not my situation. My pain at the end of each brief, unsuccessful taper almost impairs my ability to do strenuous exercise. Were I to persist with the tiny taper, it would impair.

"why has the minimum PMR dose I need not dropped in the six months"

Because that isn't how PMR - or at least, the underlying cause of the PMR, works. From my observations over the years there appear to be at least 4 different sorts. You don't use the high starting dose to "cure" the a/i disorder and then all you have to do is taper off the pred. It does nothing except manage the existing symptoms. The activity of the a/i disorder is unlikely to be stable, it appears to vary over time - anything that affects the immune system can lead to increased autoimmune activity once it has started: another illness, physical, emotional, environmental stress, the same as potentially causing it. That influence falls off - and it is less active.

For some people it appears to cycle, falling and then rising again. Depending on how long a period it is between the peaks some people may get off pred altogether - and then find it reappears a month or so down the line. Others, with a shorter repeat pattern, find they get to a lower dose at a point when it is falling and, probably for a while, rising again but eventually the activity increases far enough to need more pred to manage it again. In some people that happens and the peaks are always slightly lower so if they are tapering slowly it does appear it steadily falls away. In some people it probably does - very slowly - and they are able to very slowly taper to zero. It is very common to find you can't do a dose the first time you try it but if you go back to the previous dose to avoid a flare, wait a month or two and try again, a lot of people find they manage at the second or third try. Some don't - and have to accept that this what they were looking for: the lowest dose that manages the symptoms.

You may see a similar pattern in weight loss: some people lose a lot quickly and then get stuck, others lose nothing for ages and suddenly the weight falls off and yet others lose steadily from beginning to end. Everyone is different - not just their PMR, their response to steroids varies too. Illness in general doesn't stick to any "rules" - PMR manages to be even more idiosyncratic.

There is always the possibility your body is getting used to the effect of the pred so you need a bit more to get the same effect. And, again from observation, if you try to force a reduction and have a flare and then try again and again quickly, getting into a yoyo pattern with dose, that effect seems even more pronounced. Top experts in tapering have warned against that for years.

Thank you for a comprehensive response.

Patience is a virtue, as is heartfelt gratitude that my only enduring symptom, so far, is bleeding under the skin.

Whatever level of pain you have at the start of a taper, it should not change by the end. You have found your lowest dose - and trying to push it will put you at risk of needing MORE pred as I explained in my other reply.

I get a tiny bit of bleeding - but by using no soap at all my skin has toughened up a lot. And I do notice that any petechiae that form are in the same places as they have been before.

My petechiae always follow mild bruising or abrasion, usually from racquet sports.

Tapering from 24 to 7 mg in nine months, I had no pain to speak of. At 7 mg, I am now reconciled that further tapering is likely a long term goal.

Joydeck, judging from your conversation with Eileen it appears that totally by coincidence your lowest effective level of pred coincides with the amount the body produces naturally. In my case my lowest effective dose for PMR is quite a bit lower, hence my noting the difference between PMR control and laggardly adrenals. I've thought for a long time that I must process pred very effectively and that's probably why I was able to achieve such a low maintenance dose relatively easily. But from this point I'm the same as you. Attempts to get lower result in increasing symptoms.