flares and adrenals: hi folks me again I posted... - PMRGCAuk

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flares and adrenals

Skier321 profile image
7 Replies

hi folks me again I posted 2 weeks ago about statins. I am on 2.5 mg of prednisone and have been for a month. Last couple of days feel a lot more shoulder stiffness. I just took 5 mg this morning. I flared in January when I tried to go to 2 mg. Question. If I do flare protocol again to 8 mg for 1 - 2 weeks. What does this do to my adrenals each time I go above 7.5 mg and shut them down then drop back to 3 mg where they way up again. Will I damage them?

second question. How do I know if one week or two week flare protocol is needed. Is it just being symptom free in the morning? Thank you for your assistance.

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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As you have flared twice at same level within a matter of months, it sounds as if 3mg is probably your dose for now... won't always be, but no point in trying to force a reduction.

You have only had PMR a couple of years, and despite what many papers and doctors say, it can last a lot longer than that.. even if it is the type that's appears to directly related to Covid as you imply in your bio.

As for adrenals and flare protocol, a couple of weeks on higher dose isn't going to do that much damage, but obviously it would be better if you didn't have to increase Pred dose too often.

So suggest you treat as flare - drop back to 3mg... and stay there for at least 2-3 months... then very slow taper - if not already. .. and also look at your pacing protocol - that's very important in any autoimmune disease- see link -

healthunlocked.com/pmrgcauk......

Your PMR is still very much alive, and although you started on a high dose [so would expect you to be able to taper quite rapidly initially] , would say looking at previous posts it hasn't been managed very well once you have got into single figures of Pred.

Too many flares... not sure whether they are all self inflicted or your doctors have been pushing you... but the management has not been as it should.

Skier321 profile image
Skier321 in reply to DorsetLady

As always thank you for your wise advice. I will do DSNS reduction now

PMRpro profile image
PMRproAmbassador

The whole point of the flare protocol is that you aren't at the higher dose long enough to cause a problem - and anyway, it isn't as black and white as 7.5mg, that is a ballpark figure. Someone on 7mg recently got a perfectly normal basal cortisol level. It really can vary a lot.

The trick to successful living with PMR is to find a rate of taper you cope with well and long enough between steps down to avoid outstripping the PMR - you aren't heading relentlessly to zero, you are looking for the lowest effective dose at any given time. If you overshoot you must regroup quickly, not be in denial and hope it will improve. If you do that you risk getting into a flare severe enough to need a lot more a few days at a slightly higher dose.

Skier321 profile image
Skier321 in reply to PMRpro

Much appreciated. This is a strange disease, at times you feel like you are doing great and then literally in a couple of days you slip back. This is just like a game of snakes and ladders that I played as a kid.

PMRpro profile image
PMRproAmbassador in reply to Skier321

Yup - you aren't the first to make that comparison!!!

Raewynne profile image
Raewynne

All I can say is I dropped from 4 to 3.5 mg and I couldn't handle it .I went up by .25mg to 3.75 and I am much better there.Ill stay there for a few weeks.Im in no hurry. I think our bodies do dictate what we can handle.We have to find our base level.Im not going to let the medical profession push me in to lowering.Im the one living in my body.

Skier321 profile image
Skier321 in reply to Raewynne

You are right

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