Flare ...I believe?: Good Morning All. Just a... - PMRGCAuk

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Flare ...I believe?

Stifffingers profile image
16 Replies

Good Morning All.

Just a question please, to you “experts” .

I won,t run through my history , I believe you have that anyway.? Pre Covid , i was on my journey down to tapering to Zero. ( I was on 2 mg) Some wise owl, suggested that maybe ? , I would be better to remain ,as I was, due to the dangers of Covid, and being in that vulnerable bracket. I did actually try to reduce ( oooops sorry) only to stiffen up , and have remained on 2 mg to this day.

Yesterday eve, I suddenly had pains. My Knee went , groin, I was a stiff Bunny. Had to be helped off the couch , and off I went straight to bed 8, o’clock and was asleep in minutes. I did for the first time in 2 years , took another dose of Pred , ( another 2 mg).before retiring. Woke up in the middle of the night sneezing , so maybe I had the start of a cold? Today , apart from some sniffles , and my normal aches and pains..I appear to be ok again. I will after this note, take my normal dose of 2 mg . Would you Agree ?.

When I woke up this morning , it dawned on me , that apart from my normal morning of swimming, I also went to the Supermarket and carried out a very heavy box full of Bottles ., and the of course into my House. Would this in your opinion be a spring board for my I suppose FLARE? I,m also experiencing a lot of stress at present, so I assume 2 & 2 make .........

So , repeating myself can I stay at 2 mg , as I don’t really want to up again, as I would I guess like so many others , want to come off these pills permanently. Did I do the correct thing in taking a booster dose? Any additional words of wisdom , would be greatly appreciated.

Kindest Regards

Paul

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Stifffingers
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16 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Paul,

“Pre Covid , i was on my journey down to tapering to Zero. “.

Actually your mindset should not be that, it should be “reducing to find LOWEST dose that controls symptoms” Might be semantics- but it’s true!

I think your attempt at reduction earlier confirms that 2mg is only probably just enough for you at the moment - and the stress plus a bit of heavy shopping, and maybe a cold has tipped you into “the not quite enough Pred” scenerio.

Yes you did right to boost dose, and it might be wise to continue at 4mg for a couple more days just to sort things out. You can probably drop back down to 2mg, but 3mg would be better.

Note to self - listen to wise ones on forum in future! 😉 😂🤣😂

Stifffingers profile image
Stifffingers in reply toDorsetLady

Dear oh wise one!

Fully understand , logged . The “Journey down to Zero“ was simply the instructions I was given by my Rumi. At 15 he told me to go down to 12.5 , for about 2 weeks/ Month if I remember correctly, then to reduce by 1 mg a Month until Zero! Covid interrupted my Appointment /s . I was asked prior to this to come with my latest blood tests. Obviously having attended. Again I can’t remember, but believe my DR , said during a phone call consultation about another subject, my markers were good!

So that was “ my journey to Zero. “

Regards .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toStifffingers

That’s what many doctors say......but life has a habit of disrupting their plans....and they don’t realise how long PMR lasts - it’s invariably not the 2 years they think!

PMRpro profile image
PMRproAmbassador in reply toStifffingers

The markers may be good - but all that means is you are still on enough pred to manage the inflammation adequately. And 2 years? That is the basis of many of the tapers in the medical literature - but every single one of them has a codicil: the taper must be adjusted to the individual patient. That covers a multitude of sins but they tend to ignore it ...

Stifffingers profile image
Stifffingers in reply toPMRpro

Does staying on Pred .... say at 3-5 long term have any affects on the body?

PMRpro profile image
PMRproAmbassador in reply toStifffingers

It is what is called a physiological dose: about or less than the amount of corticosteroid the body produces naturally in the form of cortisol in order to function. If you reduce the pred dose, the body must make more cortisol to keep to the required level.

PMRpro profile image
PMRproAmbassador

And a reminder that Prof Dasgupta told us a few weeks ago that he keeps many patients at 2-3mg long term as it reduces the incidence of relapses.

Stifffingers profile image
Stifffingers in reply toPMRpro

I wasn’t at this presentation. Did I miss something posted regarding this?

How long Term , is long ?

PMRpro profile image
PMRproAmbassador in reply toStifffingers

He didn't say how long in so many words. It has been talked about on the forum quite a bit.

There is a link to the webinar here:

healthunlocked.com/pmrgcauk...

Stifffingers profile image
Stifffingers

And how would ones body do that naturally?

PMRpro profile image
PMRproAmbassador in reply toStifffingers

Do what naturally?

Stifffingers profile image
Stifffingers

Create the cortisol. If the dosage of Pred is reduced.

PMRpro profile image
PMRproAmbassador in reply toStifffingers

There is a very complex feedback set-up that regulates a range of hormones and organs in the body. When the level of corticosteroid in lowest at about midnight that triggers a cascade of actions that results in the release of cortisol in the early morning to get you going for the day. If the pred level is high enough, this cascade doesn't happen because the body knows there is enough for normal business. If you are on pred long enough the adrenal glands get out of practice and although they should start to function as the pred dose gets below 5mg they are rusty and not very reliable. The body doesn't care what the corticosteroid is - natural cortisol or artificial in the form of pills.

Stifffingers profile image
Stifffingers

So...... if I’m understanding this well enough.

At 5 & above the Pred is controlling the levels .Below this its up to my rusty old Adrenal glands to start working.

I guess my question originally was , is there anything I can do to assist this process? Ie : Rusty old Door , put some oil on the hinges.Diet. ? Exercise? Supplements?

PMRpro profile image
PMRproAmbassador in reply toStifffingers

No, the only encouragement it is possible to offer is a lower dose of pred so the natural version is required to top up. There are NO supplements or anything else - whatever you may read on internet sites claiming they have the cure. All they do is fill their bank account and empty yours ...

Stifffingers profile image
Stifffingers in reply toPMRpro

Hi

Read nothing on line. Only here.

Just a curious mind trying to understand this PMR journey.

Taken a 5 mg pill today to try and relieve my stiffness.

Onwards & upwards .

ThNk you for your patience .

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