down to 17.5 mg pred, from 40, still some symptons pmr

[arvine]

wondering if the pred is suppose to relieve pain completely from pmr,, shoulders, buttocks, hamstrings, initially on 40 mg, complete relief, reduced to 20 over 2 wks or so, nov 1 approx until jan 18 reduced to 17.5, during that time on 20 had days still pain in shoulders, stiffness in am, subsided most days in few hrs, some days worse than others, now, on 17.5 had a few days where pain seemed to increase, one day lasted whole day, i know over activity can make worse , but i have just been doing the usual, groceries, light cleaning cooking and some baking, trying to pace out my activities, does anyone or everyone experience this, in other words, pred doesn,t completely relieve pain all the time

[polkadotcom]

I have never been completely pain-free from day 1 on Pred, but it gave me my life back. With about 80% pain relief to begin with, I could go back to work, make some attempt on housekeeping (why?) socialise and basically live again.

Unfortunately and unluckily for me other medical conditions hopped in to muddy the waters, but for that year of 'normality' I have always been grateful.

[DorsetLady PMRGCAuk volunteer]

Hi arvine,

See from earlier posts that you have decreased from 40mg since Oct last year. That's quite quick, personally would say too quick in your case, but I guess that what you were advised.

You did say in earlier post that at 20mg your pains returned, did you tell your doctor this? If so, what was his/her response? Should have been - don't lower any more whilst you still have pains.

There are recognised stages of reducing Pred, but in all plans it should say, only reduce if you have no ( or little) symptoms and/or your blood readings do not cause any concern.

The Pred does not cure PMR, there is no cure, but it does control the inflammation that causes the pain. Initially a high dose is given to get that built up inflammation under control, the art then is to reduce slowly enough to get to the level that controls your inflammation. If you go too fast, you may go below that level without realising it - until your pains return!

Once you are on the correct level you should have a good level of relief, at least 70%, most people still get the odd twinge, but not enough to impact their normal life.

As time goes on, and the inflammation begins to subside, you should be able to get to lower doses, but that varies from person to person, and of course, on your lifestyle - stress and overdoing things increase the inflammation.

PMR has its own agenda, it seems to arrive unannounced and goes in its own time, sometimes 2 years (if you're very lucky) but much more likely 4 years, and sometimes a lot longer.

Sometimes it's difficult to tell what is steroid withdrawal and what is a return of symptoms - if pain comes on the day after reducing likely to be withdrawal symptoms (which is why many use a taper that takes a few weeks rather than "overnight", that seems to fool the body) if it takes 4 or 5 days or more before pain comes back it's probably a flare.

Think you need to discuss with doctor. No point in taking too little Pred, you may still get the side effects but not the benefits!

Take care.

[PMRpro Ambassador]

The expected reduction in pain for PMR is about 70% globally on a starting dose of 15-20mg. So, no, total pain relief is not expected although some people do experience that.

40mg is really far too high a starting dose for presumed PMR - and using it runs the risk of clouding the view since other things would respond to that high a dose. If the patient then experiences difficulty in reducing that dose it adds to suspicions it may not be "just" PMR. The symptoms we calll PMR are just the outward expression of an underlying illness - and there are several.

And there are other things that may be present alongside PMR such as myofascial pain syndrome and piriformis syndrome and bursitis to name a few,, which will cause muscle and/or referred pain and not respond fully to oral pred. And then there is ignoring your own personal limits for what you can do without triggering PMR pain and stiffness in the form of delayed onset muscle soreness - only you can assess that and do anything about it.

If I took more pred I might have less back pain (for example) when I then do more housework. But as polkadotcom says - why would I?