PMR and Tapering

Hello Kathy, you have done well getting to 6mgs in just over a year, but I fear with the consequence of a possible flare. You mention both additional pain and stiffness which you believe you can ride out. 

Pmr pain is the consequence of auto immune inflamation and this inflamation needs to be kept under control by taking a large enough dose of preds. If you fail to do that then the inflamation rises above the level of preds and the result is a flare. Therefore you cannot ride out this synario because all that will happen is that the inflamation will gain more control if there is insufficient preds to keep it under control. 

Personally I would be tempted to up the preds to the last dose whereby you were comfortable at and stay there for at least 4 weeks. I fear that if you don't then the inflamation will gain control and you may as a result have to up your preds considerably higher.

all the best, christina 

Hi Kathy,

You have decreased at a much faster pace than most of us which is great for you. Maybe you are younger or the PMR was diagnosed quickly or, maybe, you're just one of the lucky ones👍.

With how you are feeling now,  I would do as Christina said and increase to the dose that was managing your symptoms.  At that point I would stay there for 4 to 6 weeks and then decrease using the DSAS method Eileen has posted many times here on the forum.

At about 7.5 mg you start asking your adrenals to start kicking in again and it is often at that point that flares occur.  I was at 4mg and reducing to 3 1/2 mg when my last flare hit.  I had no pain or unusual stiffness when it happened either. I believe now it may have been because I decreased on 

3 consecutive days (my bad but I didn't know at the time) in the third week of the program.

We need to remember that our goal is not to get to zero pred as fast as we can because the PMR will surely trip you up.   It is truly the story of the tortoise and the hare here.

Hope you are successful on your journey.

Hugs, Diana🌸

Hi Kathy - You are doing well but if you are getting niggly pains I would stay at the present dose for a bit longer.  Are you reducing by 0.5 mg? over an extended period, remember you are very close to the point where you are hoping your adrenial gland will have to start working again.

I'm at 7.5 after 10 months.

Best of luck

If the pain and stiffness start to get worse then you won't ride it out - you will run the risk of letting in a proper flare and having to go back to a noticeably higher dose to get it under control. To be down to 6mg after a year is very fast - top experts would have you at 10mg still, until 15 months post diagnosis before reducing any further (see the "Bristol paper" in this post: https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 )

If the pain is worse than the best it has been then the inflammation is not well controlled - and uncontrolled inflammation in the long term puts you at increased risk of cardiovascular disease and even cancer. Someone earlier today accused me of scare tactics - not at all, these are recognised longterm results of inflammation and I discussed it at length with one of Germany's top cancer gurus.

Keep up the good work.  I am down to 4mgs from l5mgs

in l8 months, using tylenol when I was stiff and sore and

resting and eating good plain food.  I take only prednisone

and an antibiotic for an ongoing bladder infection, except

for the odd tylenol that's it.  I feel very lucky that I have done

so well for there are many who suffer dreadfully, however, 

this is the way I'm coping.   Love to all.

Kathy, once on steroids the aim is to reduce to the lowest dose that controls the symptoms. That dose will be different for everyone so unfortunately no one can tell you what dose that will be for you.  You only know you have passed the point when you feel increasing pain, as unfortunately you are experiencing now.  You now need to return to the last dose at which you felt comfortable and remain there for a good 3-4 weeks - your maintenance dose for now. You will then need to taper from this dose the second time around much more slowly than before, reducing by just half a mg but only one one day of the first week, two of the second, three of the third etc.

Our bodies normally produce around 7.5mg of natural steroid (cortisol) when well.  However, that natural supply will have been suppressed by the long term Pred, hence the need to withdraw Pred very slowly at this stage to allow our bodies to start kicking back in with their natural supply of steroid to bridge the gap between the two.

Far better to tackle the pain by increasing the dose and, if necessary, accept any brain fog for a little longer - at least you already know from your experience that the brain fog does improve.  Good luck.