Zero Prednisone Discussion

The people I know of who are off pred after PMR or GCA with PMR symptoms don't have the pain/stiffness symptoms - if they did they wouldn't have stopped the pred. Most of them say it took a year or two to really feel their muscles were back to "normal" but as they all say, they are older than before PMR, some as much as 6 or 7 years older and while that isn't much for someone in their 20s or 30s, for people in their 70s and even 80s there is a big difference. I've had PMR for well over 10 years - it started in my early 50s, there is no way I can expect to be "the same" even if it had gone tomorrow. As it is it is well managed with 5mg and there is not a lot I can't do - bar walk up steep hills but that is probably as much a reflection on my level of fitness generally.

MrsO is one person on here you can ask. 

Thanks, Eileen. You say... if they did they wouldn't have stopped the pred.

For myself, if I could get to a dosage at which the stiffness/pain was no worse than it is now, and yet I was still taking a small dose, I would be satisfied.

But also if I completely stopped the pred and still had the same stiffness/pain, I would be zero-pred but with some symptoms. 

I dont see that it necessarily follows that zero-pred means none of the PMR symptoms.;

If you have pain and stiffnes that is PMR pain and stiffness while still taking pred, the chances are that by stopping taking pred the daily dose of new cytokines will build up in exactly the same way as they did at the outset of PMR - and the symptoms will get worse again. For some people it builds up slowly, for others it apparently appears overnight. If you go to a dose that is less than the dose needed to manage each day's new dollop of inflammation then it will build up - like a dripping tap into abucket will eventually lead to it overflowing.

Some people develop pain and stiffness when they reduce the pred that ISN'T PMR, it is most likely osteoarthritis which also responds to some extent to pred. But it is almost impossible to tell. For me, as long as I remain pretty much pain-free on a low dose of pred that is fine - I'll accept the possible risks. I've already lost enough of my middle age to PMR.

Eileen, I'm not understanding. The only time I have been stiffness/pain free is during the first few days of beginning prednisone. After the first few days, even on the same dosage, some stiffness/pain returned. And I thought that I understood it to be the general case.

Apparently it is not?

I have finished up with Prednisone in September. My last drop was only a 1/2 mg to zero. After the usual few days of adjustment, I felt a huge burst of energy. I keep feeling more and more energetic now. I feel so much better each month that I realize that when I thought I was feeling good before ( like last summer) it was just that I was comparing to how I felt the months before. Now I feel like my energy is restored, but my muscles still aren't as strong as before I had PMR. I also have a tiny bit of discomfort at the upper reaches of range of motion in my shoulders, but really having my energy back is really so great, that it doesn't really seem like a problem to have that very small amount of left over stiffness. I am also hopeful that that too may improve with time. I wish that everyone could recouperated to the extent that I have.

Sorry I thought we were talking about pain at low doses after being pain-free beforehand. If you had pain and stiffness at the high doses you can expect that to remain much the same all the way through - it is your yardstick. If that increases then that is a sign the PMR is no longer being managed. 

More often than not the initial freedom from pain is partly the difference compared to the agony before - but when it returns a few days later it is also possibly because you are doing more than your muscles want to do. Many people make that mistake - they feel so good that they rush around trying to catch up all the things they haven't been able to do. Sometimes the result is so bad the doctor even thinks it isn't pMR after all. Management of PMR is not just pred - it is physical adjustments too.

Your initial powerful response to prednisone might reflect that your body had not developed any "drug tolerance" to the prednisone yet.

So perhaps there could be more effect from the pred initially, before the body got used to having it in the system.

I say this in part based on my recent experience, where skipping daily dosage every few days seemed to create a more-dramatic response to pred at the same dose.

I am thus putting some faith n the theory that I have occasionally come across that increasing the between-dose interval of time does in some cases seem to allow one to get the benefit of the drug using a lower amount of the drug over each weekly period.

Although I took things too far, too fast (became very cocky about my seemingly dramatic progress) and ultimately induced a week-long flare, I found that over the entire 4-week period (including this last "recovery" week), I had managed to keep about an extra week's worth of the drug in the bottle versus the previous 4-week period at my standard dosing of 5mg/day.

Now recovered, I am back to skipping the occasional 5mg dasily dose and will not try for every-other-day quite so soon this time, and by the way I am using an early-morning daily regimen of lengthy exercise and moderation of carbohydrate to help me along, especially on my "skipped" days.

On the day after a skipped day, I can actually feel some hard-to-describe effect of the pred, something that feels vaguely like a warming and burst of energy, which I do not notice when taking the pred every day.

In the absence of any other explanation for this, I am attributing this to something along the lines of a drug tolerance that is reduced when the dosage interval is increased from 24 to 48 hours.

My experience was that I was free of ALL pains (not just PMR) during my initial 5 weeks on pred.  As I dropped the non-pmr pains came back, and fairly quickly also a little "stiffness due to pain" in my upper thighs.  My yardstick regarding whether a taper is safe or too much is whether that little bit of discomfort starts to affect my ability to rise easily from a chair and take the first couple of steps.  If i am fine in the morning before my daily dose of pred I figure I am good to carry on.  If the pain starts to increase, time to slow down or even up the dose temporarily.  As you probably know, taking pred is not the only thing I am doing to improve my health so other factors may be helping me.

Cindy, It was at least eighteen months afterI took my last dose before my muscles returned to more or less full strength. It happened almost imperceptibly then I found myself doing quite srtenuous things without tiring. Give yourself lots of time and good luck.

thank you so much cindy, your words of encouragement mean a lot to me as i am so looking foward to regaining my energy as well as becoming pain free

Many doctors suggest adding 5mg to the dose that led to the flare - until the symptoms are under control. You can usually reduce quite quickly back to the dose above the flare dose where you had been OK . To get that low in a year is very good going and it may well be that you have found what you are looking for: the lowest dose that manages the symptoms. Which means the dead slow approach is a good idea although it may not get you significantly lower just yet. But it will probably confirm the fact.

I am thinking that perhaps a percentage increase, rather than a "milligrams" increase, would be better for the doctors to recommend.

Certainly 5mg above 5mg might be quite different than 5mg above 20 mg, if perhaps not quite proportional, math-wise.

For my recent flare, brought on by skipping pred for successive days, I used 7-8mg instead of 5mg, which got things under control, back to "normal" within a week.

But so much of what comes from doctors seems nearly removed from the reality of pmr's actual response to treatment.

Dan, I've recently had a similar thought about the initial dosage.  Surely 15 mg isn't appropriate for everyone, or 20, if that is what the particular doctor prescribes.  Would I, as an underweight individual, have done all right with a slightly lower starting dose?  Do some people not respond as well at the same dose because of other non-pmr factors, which might include total body size and weight?

The thinking is that you have gone down below the dose you need currently - most doctors probably suggest 2.5mg drops so 5mg takes you back above the right dose. But they also suggest the 5mg because that is almost bound to take you above the correct dose and the excess will mop up the accumulated inflammation without going back to a really high dose. A lot of inexperienced doctors would send the patient back to the beginning and 15mg even though the flare happened at say 4mg - but that isn't really necessary in most cases, 9 or 10mg would be plenty. It's also less depressing for the patient. The wrong way to go about it is to creep up from where you are 1mg at a time - hit it reasonably hard straight off and the flare won't get hold.

The recommended starting dose was chosen at that level because it works for most patients - it isn't so long ago that the common starting dose was 30mg. Obviously you will end up with a lower total dose if you start much lower. It used to be that dose was relativised on the basis of body surface area (no idea why!) which doesn't vary as much as you would expect. A study done in Italy a few years ago looked at starting with 12.5mg and they found that 75% of patients achieved a good result within a month - and the ones who did best were the lower weight patients. So yes, body weight does have a role to play and yes a small slight person might be fine starting on less than 15mg. 

There are a lot of factors to consider though. One lady who has had PMR twice with about 5 years in between was given 30mg the first time round, had not a single problem, it resolved quickly ad she reduced over a couple of years and was off pred. The second time she was started on 15mg and the following course was quite problematic, totally different from the first time. Was it the starting dose or were other factors (like age) playing a part?

About a third of patients don't respond as well to pred as others so need a higher dose to get the same effect. If there were a way of knowing what anyone will need then you could work out a more appropriate dose - but we don't. So they chose a reasonable number - 15mg works for the vast majority. If you go about things properly you SHOULD be able to reduce within quite a short time to the lowest dose that manages your symptoms. But they haven't really looked at the best way of using pred - other than the messing about we have done as patients on the forums. That messing about seems to have established that really it is perfectly possible to reduce the dose from the start almost using the "Dead slow" approach - you just spend a few weeks at 15 until all the symptoms are stable and reduced as far as it looks as if they are going to and then you can start reducing VERY SLOWLY. Until you notice that you aren't as good as you were 0.5 or 1mg higher. You stop, go back there and stick for a few months. Then you can try again, 0.5mg at a time preferably. If it doesn't work again - same procedure. The sooner you start to reduce the less dependent your body becomes on the pred. The smaller the steps the less likely you are to suffer steroid withdrawal discomfort that looks like PMR so you can't tell which is which. And the less likely you are to allow a flare to get going - and that inevitably increases the time you spend at higher doses because you go back up to get the inflammation under control. With DSNS you should have no need of that.

Dan, I had a friend who had been on 60mgs for GCA and was told to reduce by whatever milligrams.... always the same amount. He followed instructions and found he continually regressed when he go to around 30. His wife suggested that maybe it was because, as the dose reduced, the same steps were relatively bigger and she was proved right. Credit to jhis GP for learning from a florist!

Eileen, you have been and are a godsend.  I certainly will be needing more guidance, this flare has taken away some of my hopefulness to become a member of the Zero Club...

 

Eileen -this is the second day I have bumped myself us to 7 mgs from 4.5 .  I do notice a bit less discomfort, should i stay with this dose for a week as to evaluate if this is going to be enough to stop the flare?

 

You do need to give a a few days if it is obvious that is enough - but that is only 2.5mg more, many doctor suggest 5mg more than the current dose in a flare because you can drop that 2.5mg again pretty much once the flare is controlled. You may not get back down to 5mg again immediately if it is a very active flare but the sooner you hit the flare and control the inflammation, the sooner you will be able to go back to a lower dose.

Turns out the increase is not enough, yesterday i went to 10mg, again this morning. The decrease in discomfort is not what i would like.  I intend to continue on 10mg for the next few days to give the chance for the pred to 'mop up' the inflammation.  Also, wondering if i want to find a antiinflammatory diet to add to the picture...