With PMR, I tapered quickly to 7mg but have been stuck there for the last six months, moving to 8 mg only yesterday. On just 0.5mg tapers, I had hoped my symptoms were pred withdrawal but, a week later, symptoms were always worsening. So, today, I Googled adrenal gland awakening and was astonished to read this from two websites of *The Imperial Centre for Endocrinology*: *"If you look at old textbooks and websites, you will see that in the past, people thought that **7.5mg** was the equivalent amount of prednisolone that you need in a day, but we now know that this is too much and is much closer to **3mg**. Even doses of 3-7.5 mg therefore have the potential to cause side effects."* *“We know that patients who have no adrenal glands feel fine on **3mg-4mg** prednisolone so that is the equivalent of what your adrenal glands make daily. If you feel unwell as you cut the dose before you reach 4mg, that would suggest that your primary vasculitis is not fully in remission. However if you get down to **3mg**, then reducing the dose further requires your own adrenal glands to be in working order.”* So I guess I am stuck at 7mg through PMR inflammation alone, which makes future treatment simpler.
I think that is slightly misleading - yes, for some people the body can function on 3-4mg pred and many are able to taper all the way down to 2 or 3mg without any problems at all But you then have to take the bioavailability into account, the amount of the oral dose that is absorbed. For people who absorb 90% of the pred they take, they will function well down to 4mg and even lower. However, some only absorb 50% and so some people are only getting the benefit of that amount, when they reach 7mg they are effectively at 4mg.
If you don’t agree me and want the other side of that opinion from people who have been there you only have to look at the forums. Many people find that the fatigue comes in at about 7mg, it is very often a difficult dose to get past for that reason. There are a lot of people who found fatigue a major problem at about 7 down to 5mg - but by going slowly they improved or found that at about 4-5mg they suddenly felt better only to have a return of their vasculitis at a lower dose so they had symptoms that were not due to PMR at 7mg.
Whilst I appreciate the Imperial Centre for Endocrinology is a top centre - there is still disagreement amongst experts! But it doesn’t really matter does it? Whether you need the 7mg to feel well is because of your adrenal function or because the vasculitis isn’t fully in remission - which frankly seems a strange comment, it is either in remission or not, you don’t have a halfway house, eventually the inflammation will build up and cause symptoms. And we know that less than 20% go into remission in 2 years, the average is 5.9 years and the bulk of patients take about 5 years. You will probably get there, 95% do - just not yet…
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 have had PMR FOR 50 months. At month 47, i was on 1 mg of methylprednisolone. i went into hospital for the cosyntropin test and AMAZINGLY my adrenals suddenly started functioning. i had two spikes in the past year and then went right back to being adrenal insufficient. I gutted out the pain and hung in at 1 mg for about three months to see if my body would adjust to the lower dose (had been 1.5 mg). Toughest thing i ever did but I guess there is pain while you are trying to get your own adrenals to kick in. My cortisol was 5. Finally, my adrenals are working. My sed rate is slowly coming down and the pain is miserable. i will see if i can adjust to this minimal dose of steroid or not. i dont,now if this is the adaptation to adjusting to the lower dose. My endocrinologist says there is an adjustment. I’ll keep you all posted. i just discovered that all mail from this site went to my junk mail so i havent heard or seen EILEEN’s or anyone else’s posts in months. Glad I discovered this.
I’m kinda late asking this question but…is it possible (even probable) I may have to be on prednisone for the rest of my life?? at what low dosage can I expect to (maybe) have no more side effects?
I know we’re all different, but I’d appreciate some different experiences!
also, what is the dosage when gaining weight ceases to be such a problem?
thanks…
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?
As Eileen says above, 95% of people eventually get off pred. Your chances of being one of the 95% are, of course, very much higher than being one of the 5%. You have a 95% chance of getting off pred. Pretty good odds if you ask me!
As for side effects, we are indeed all different. Some people don’t have much in the way of side effects at 7 mg; others, like me, find they are pretty much symptom free at 2 mg but notice minor effects at a slightly higher dosage.
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.
If your sed rate was raised it was nothing to do with poor adrenal function - it was probably the PMR.
There is no way to tell lynda - you will know when you get there that you can stop pred. It is pretty unlikely - i.e. NOT probably - you will be on pred for life and you have to get your head around the fact you are where you are and there is little or nothing you can do to change it. Life with PMR and pred really isn’t that bad once you get the hang of it.
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.
After 13 months on pred, my only side affect is bleeding under the skin. An annual eye test , last week, showed no Glaucoma and minimal cataracts. As for weight gain, I have yet to regain the 3 kg I lost just before taking pred, try as I may (my BMI is 19).
Omggg…lucky you!!
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.