As I've weaned over 6 months from 10 mg/day to 1.5 mg every other day, I've had a few minor setbacks that have me now at 2.5 mg every other day. My question is: Can you reduce to no prednisone w/o the PMR being in remission? It doesn't seem like you could. I'm wondering if the ultra slow wean is just a way to follow the PMR down until it goes into remission.
PS The return of adrenal gland activity would be lovely any time now. I've been told it could take 1/2 -1 month for each month you were on prednisone. Does the clock start before you get to 0 mg?
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leofred
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Hello Leofred, These are the questions I would love answers to, so I won't be much help but want to thank you for the questions, hopefully someone may have the answers.
The idea of the ultra slow wean is to achieve the most accurate minimum dose that manages the symptoms as well as the original starting dose did while avoiding the discomfort of steroid withdrawal - sounds complicated put like that! I assume you know that PMR isn't the illness - it is the name given to the symptoms produced by an underlying autoimmune disorder that causes the body to attack itself, causing inflammation and pain and stiffness. Pred doesn't affect this underlying disorder, it just allows you to manage the symptoms in relative comfort until the cause burns out and goes into remission - which it does for the majority of patients sooner or later. Every day the body sheds a new dose of the cytokines that cause the inflammation, this happens in the early morning and is why the stiffness is usually worst in the mornings (not always but mostly).
The original 15-20mg starting dose is one which will work for the vast majority of patients to clear up the existing inflammation that has accumulated. Once all that has been cleared out you need a daily dose that is enough to manage the new inflammation which occurs again every day. Since everyone's level of illness is different and everyone responds differently to pred there is no "correct" dose, you have to find it by titrating the dose - reducing it very slowly until you find the right amount that just manages the symptoms without leaving you at the mercy of an excess of pred because it is excess pred that leads to the side effects. You aren't "following the PMR down", you are identifying the least amount that works for the current level of activity of the illness. It may wax and wane - needing less at some times than others so you may feel fine at the dose you finally find for a long time and then suddenly it doesn't seem to be working as well but a bit more is better.
It doesn't take long for the body to get used to the dose of pred it is getting (which is why the way you feel at first does get often better after a few weeks) and if it is removed too fast it can cause pain and discomfort as the body suddenly has to get used to a new level. This is called steroid withdrawal - and a few years ago a few of us worked out that you could save all that agony by slowing the rate you reduced at down - not lengthening the time but making the steps as small as possible. At first we thought it was only needed at the low doses but then realised it was likely that people were having what they thought were flares and going back to a higher dose again unnecessarily so we started suggesting trying the "Dead slow" approach right from the beginning. The symptoms of steroid withdrawal are known to often be very similar to the symptoms of the illness you were put on pred for in the first place - so how can you know which is the cause of any returning pain? Our suspicions have been confirmed as lots of people have got to doses way below where they had managed before.
The simple answer to your first question is - yes, you can reduce to zero any time you like but if the underlying autoimmune disorder is still active the pain will almost certainly come back. Some people have got to doses as low as 1 or 2mg and been told by their doctors to stop taking it altogether because "your bloods are normal and you don't have symptoms so the PMR is in remission" - only to have to start pred again within a few weeks or months. Obviously no pred is better - but would continuing on that very low dose have been better than risking a return? Who knows! The only way to find out is to go to zero and see what happens. That is the only way you know if the autoimmune part has gone - no PMR symptoms.
And yes - adrenal function should start to return once you are below about 8mg which is the equivalent of what the body has to make every day to deal with normal life processes - cortisol is essential to life for all sorts of reasons. At this stage the ultra-slow approach helps with this aspect too. The production of cortisol is governed by a very complex feedback system which involves a who load of other organs and hormones. It swings about a bit, sometimes a bit too much, sometimes not enough and eventually settles down where it should be. The slow reduction helps not to unbalance that - like a pendulum swinging gently until it comes to its ideal position, shove it again and it will swing about a bit more.
If you have managed to get down to 1.5mg without extreme fatigue and other sorts of feeling ill, especially when under stress, then there is not too much to worry about - you adrenal glands are working reasonably well. Whether they would cope with extreme stress - whether mental/emotional, other illness, injury or surgery is another matter which is why they give the warning and you should always tell a healthcare practitioner of any sort that you have been on long term steroids.
What sort of tablets are you on? If you are taking ordinary white tablets they can be cut and are also available in the UK as 1mg dose and it may be better/easier to reduce if you took 1mg every day rather than 2.5mg on alternate days. Alternate day dosing is a recommended way of reducing the side effects of pred in many illnesses but it doesn't work as well in PMR for some reason, probably because the antiinflammatory action of pred lasts for between 12 and 36 hours depending on the person and there is none there to deal with the new inflammation on the second day.
PMR Pro-I have been on 5 mg for awhile and did well, I have been on Pred. For over 4 years, I am now doing a alternate -5-4. I have did this for a month, any advise on dropping to the 4mg.?
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