Back to the daily routine

[Ta1ch1]

Well, I'm back home from the trip and feel that the break has done me well. Not been a completely pain-free 3 weeks, but I have managed to reduce from 13 to 12 gms of Pred. I'm happy to put up with some discomfort if it gets me closer to a reduced daily dose.

[DorsetLady PMRGCAuk volunteer]

Hi,

Depends what you mean by “some discomfort” - don’t let it become too much!

Better to take the actual amount of Pred YOU need - you are not relentlessly reducing to zero, but trying to find the lowest dose that gives you a decent quality of life.

[piglette]

I have learnt from bitter experience that trying to put up with some pain and sit it out is a BAD idea. You not only have to put up with the pain but you run the risk of the PMR turning round and biting you when you may then be in a worse state than if you had just gone up a mg or two originally. It is not a matter of trying to reduce your daily dose come what may it is a matter of getting to the lowest dose you can exist on without discomfort. Slowly, slowly.

[GOOD_GRIEF]

The level of pain you experience is a pretty good indicator of the level of inflammation in your body.

Not enough pred means accumulating inflammation, and accumulating inflammation means more pain (and more collateral damage), and more pain means more pred than you would have needed had you gone slower in your reduction, making sure you find the level that keeps your inflammation under control while you wait for PMR to burn itself out.

I learned the hard way. It required another 4 months at 20mg/day to get the inflammation under control so I could go on a DSNS taper that worked.

The lesson is that useless suffering is useless. It won't cure your PMR. Nothing will except time. In the meantime, pred keeps you moving and going so that everything else doesn't shut down from lack of exercise, and limits the collateral damage of inflammation.

[HeronNS]

It depends on the reason for the pain. If it's steroid withdrawal, or another condition like osteoarthritis, then of course you must continue to taper, but let any steroid withrawal pain settle before continuing, just in case.... The problem really is figuring out what the cause is. In my case I have had several what I consider really serious side effects from pred I am indeed willing to put up with mild discomfort. BUT I do not continue to taper until the discomfort goes away, in case it is the PMR after all, and not something else. One of the pred side effects seems to be giving me nearly as much trouble now as the initial disease did, so I would dearly love to be free of pred. But if I were to taper off completely I'd have the residue of the side effects (myopathy) plus probably a lot of fatigue because I don't think my adrenals are up to scratch, and I am very wary of thinking PMR is in remission given the flare last summer. And it was that flare, I think, and the relatively short and not too large increase in pred dose, which has really set me back. So do what you can to avoid flares, it's not worth tapering even a tiny bit too fast if you end up setting yourself back. It isn't always as easy as upping a dose for a few days and then getting back on track, although a lot of people posting seem to find it so.

[Ta1ch1 in reply to HeronNS]

I agree with your statements here. Clearly, I would love to be Pred free, but not at the risk of making things worse. unlike some here I do not have the luxury of a Rheumatologist. Having said that, some of the stuff people are reporting make me wonder if these Rheumatologists are trained to the same degree as others. So I use this support group to gain what information I can and of course, will no doubt make my errors as I go along. It's a learning curve and I am grateful for all advice, even if my stubborn nature makes me want to do otherwise.

[PMRpro Ambassador in reply to Ta1ch1]

"I do not have the luxury of a Rheumatologist" - believe me, not always a luxury! Sometimes they more like a penance!

But as the other says - a bit of discomfort is one thing - but any that then INCREASES rather than being stable or fading is a danger sign. Sometimes it will build up to a real flare that can be very difficult to get under control - and you end up taking more pred, not less.

[Telian]

See Heron's reply I agree with her comments as I've had/having the same experience. ATB.

[Hidden]

Good on you!!!!! I wondered where you were!

Hope you enjoyed the trip and happy to hear you were able to continue taper down!!!!!