PMR back after yoyoing from 3mg to 8mg for 12 days, then back to 4mg.

[RaisinBran]

I just don't know what to do any more! Just over 26months on Prednisone. Tapered down to 0 and had to jump to 5. Tapered Dead Slow to less than 1mg and had to jump again to 5. Tapered to 3mg. and jumped to 8 for 14 days and felt wonderful, then settled to 5mg. Have done the temporary jump twice. Can't seem to tolerate even 5mg anymore so Im contemplating going back to 8mg. What do my pros's think. Just an FYI-my tapers have been as low as 1/4 of a 1mg table every 14 days

Also, I started a GF diet and have been on it for 6 days, cou;ld that have anything to do with anything?

Thank you for anything you can add!

[DorsetLady PMRGCAuk volunteer]

Definitely too much to-ing and fro-ing…and in retrospect you probably should have tapered down a lot slower from initially being on 5mg.. but that water under the bridge.

So your only option may be to settle at 7 or 8mg a least month [as the usual advice for dealing with a flare hasn’t worked] - and then taper.

But you do need to converse with your doctor. ..and both be aware that for some people PMR lasts a lot longer than 2 years, .and that some of your issues may also be adrenal related.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Once you get into a yoyo pattern with dose you are in trouble. DL has said what I'd say. I think you have to accept the 8mg for now, get settled at that over a month or two and start the taper again. PMR does flare up within the ongoing pattern of generally subsiding over time and it sounds as if yours may have.

I don't think going g/f should make much difference - is there a reason for that?

[RaisinBran in reply to PMRpro]

I don'ty have a good reason for going GF other than I read it is good for Inflammation, and I thought it may help my PMR or whatever else muscle wise. As always Thank you Pro.

[PMRpro Ambassador in reply to RaisinBran]

Think long and hard about it since there is no evidence that g/f per se is beneficial - lower carbohydrate probably is providing you don't substitute foods from the free-from aisle since they are both carbohydrate and calorie dense with a lot of additives and sugar, When you rule out all gluten-containing grains, you are taking a lot of valuable nutrients out of your diet. I know you asked this recently - and several of us told you that gluten-free neither stopped up getting PMR in the first place nor helped our symptoms.

[RaisinBran in reply to PMRpro]

Great! Thank You again and again

[jls93]

Wow, I hear and have experienced similar frustrations. That being said after putting myself through the ringer wirh multiple failed attempts i changes I had to change my perspective and approach.

First of all I had to realize my body/physiology/mother nature were calling the shots in spite of well thought out approaches/strategies/pill log (journal) of doses ( and crash & burns ). We kinda know 5mg/day is a threshold to which we meet our adrenal glands on a new level .

So getting to 5 mg and below 5mg seem to take on a profoundly different dimension/import because a host of physiological reasons all we humans will be made aware of; one way or another

This is when the saying "knowledge of the path is not a substitute for walking it". I could easily drone on about my failed attempts,but it's boring to me now .

Sooo a few tennents that worked for me were:

Successfully getting to 5mg is a big deal....

Successfully getting below 5 consider this concept:

Many of our bodies functioning is in response to a demand we impose on it. Below 5mg we are asking our adrenal glands to show up and do their job.. but they have been on "holiday" while taking prednisone (>5mg) for a period of time. Adrenal full functioning was not required.

This where the term "adrenal insufficiency" is describing a physiologic state where our "sudden" demand for cortisol can't be met.

Thus, at and below 5mg requires we carefully and skillfully attend to our PMR symptoms. If we don't,we pay a price i.e. exhaustion crankiness and feel as if being beaten with a bag of hammers ( favorite )

I had to realize after many failed taper attempts that I had to honor my physiology while tapering. This ment i had to skillfully, patiently, methodically and gradually increase the demand I was exposing my adrenal glands to with a lower dose, then wait for them to adapt/"get up to speed" successfully. At that time I added a bit of a cushion for a week or so before I dropped my dose and imposed another adrenal challenge.

Think of tapering as an attempt to drive an adaptive physiological process vs a task to achieve.

You seem to have put alot of thought, effort and calculation in your attempts to wean.

Hope it helps to provide some insight and context to the tapering process.

Hang in there. Best and blessings to you

Sincerely

Jeff

Sorry for late and lengthy respons. My body and i are navigating though a covid a__kickin'..... be well