PMR diagnosed in June 2018 15mg and then up to 20mg pred. Several flares and now at 10mg for many months. Have tried to reduce to 9.5 with DSNS method but each time bad pain returns; legs don’t work properly and shoulder pain etc.
How dangerous is 10mg. Should I get on with the pain on 9.5mg? I worry a lot as my nails are now soft and although a DEXA scan said bones good...just what damage is the pred doing? Advice please. Thank you.
It’s not the fact that 10mg is “dangerous” you need to be considering - and what exactly do you mean by dangerous? And the difference between 10 and 9.5mg is marginal in side effect terms, but can be a lot in controlling illness terms.
Many of us have been on much higher doses or for longer periods and have lived to tell the tale.
What would concern me, would be the inability to reduce below 10mg....and the fact you’ve had several flares.
The 10mg dose may be what your illnesses needs at the moment - and if it is then stay there. You will get lower, but not at the moment.
Several flares - due to too fast a taper, you trying to do too much and not accommodating your illness - or you not processing the medication as well as would be expected or a combination?
Your PMR is not cured just because you are on Pred, it’s just the inflammation caused by the underlying illness being controlled (or not in your case) by the medication.
* as you say in your profile - it’s always hanging around - that’s the nature of the beast unfortunately!
Just over 2 years is not a particularly long haul....
Stick with 10mg for the time being - trying to "manage" almost always results in a full blown flare and return to a higher dose as the inflammation builds up. It doesn't mean you won't get lower, just not yet. I think it was the best part of 4 years before I got reliably below 10mg and even then it was only about 8 or 9mg.
Shall we put it this way: after 11 years, many of them at or above 10mg I haven't crumpled in a heap yet. In 7 years, almost all at above 10mg, my bone density barely changed. I have never taken alendronic acid, just calcium and (above all) vitamin D.
Funny - my nails were soft with PMR and are better than they have ever been on pred.
Like PMRpro, my nails were always soft and splitting before pred. They became strong and magnificent on high doses, but have now reverted to their original condition on present low dose.
Tapering - how long on 10mg?
The long journey
I am going round in circles trying to decide what do for the best!
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Pred and Thrombosis
