The power of 0.5 mg prednisone

[Joblow]

OK, OK... I hit the wall you guys have been talking about. I’d stopped my methotrexate a few weeks ago, and was tapering my prednisone. I went from 7mg/day to 6.5 and fell off a cliff: down to the valley of pain, inertia and depression. I’ve learned my lesson- restarted the methotrexate and 7 of prednisone. I’m humbled.

[Mary63]

Never been on methotrexate, but have hit the 6.5 wall twice now. Planning to try again next month, having sat on 7mg through Christmas, lovely holiday, knee replacement. When my son’s wedding is over on 8th June I will try again.

[Yellowbluebell in reply to Mary63]

I am on 10mg due to taper to 9.5mg but waiting till our house move on the 20th is over!! Our youngest got married three weeks ago and still reeling from that so definitely not tapering down till everything is over!! Its either that or I put my head in the sand till its all over! Hope you have a nice wedding.x

[Joydeck in reply to Mary63]

I been stuck on 7 mg pred since last July. At 6.5, PMR returns after a week or two.

[SnazzyD]

I found 7mg hard to reduce but i toughed it out and it got better from 6mg and much better at 5mg but I was well aware of when my adrenals weren’t playing. I only have GCA so didn’t have the muscle aspect though I felt fluey achey and tired.

[Hidden]

Don't be humbled. Sometimes we have to learn by doing. 6mg seems to be my wall despite 4 attempts to 5.5 or 5mg. With a different dmard. With mxt you might be able to try again. I had at least 2 attempts at EVERY drop. Sometimes I tried the following week, others took an extra month or two. 8months at 6mg and happy to stay here while I feel good.

[Hidden]

Not having to go thru it yet, for somebody new it seems odd that these problems of hitting a wall are common. I'm sure I'll find out one day, but I'm having a difficult time understanding why it's so difficult to cut back without hitting a wall especially dropping a half a mg... It is known the prednisone has a half life such that you get reprieve from the inflammation for about 18 hours a day. And the pred is not the cure, rather a med that provides temporary relief. I understand that something is going on inside the body causing the inflammation of the vessels and connective tissues around the proximal muscles/joints due to an autoimmune problem and the body is attacking itself. So, logically, you would think the body is healing at a rate to allow reducing the pred at a similar rate.. So, does the body stop healing, or slows down its healing??? Does the problem always unmasks itself? or does it quietly just fester inside without really revealing its ugly face until its a huge issue? I just keep waiting on a big ol' tumor to show up somewhere within me. I am getting tested for all kinds of cancers.. probes going in all orifices and all checking things out. Not sure if it's needed, but i guess that's the kinds of things "WE" have to do.

[Soraya_PMR in reply to Hidden]

I’ll try to explain my understanding of it in words, but really I need a white board and arm waving to assist 🙆🏻‍♀️🙅🏻‍♀️💁🏻‍♀️

Imagine a line graph starting at 20mg pred, in time reducing to 0mg pred. It’s reducing steadily from high to low, left to right over time.

PMR inflammation is also reducing we hope, but not necessarily in a straight line. It may wave up and down a bit. Add in some stress, an infection, too much exercise and the line will likely go UP for a while. So the PMR line starts high left and moves in an unpredictable way to bottom right, quite how long it takes to get to NIL is anyone’s guess, at least 2 years, maybe 5?

All the time your pred line is above your PMR line, you’re keeping inflammation damped down. If the lines converge, the inflammation and pred are equal. Dip the pred line below the PMR line and you’ve got problems. You’ve hit the wall, and yes 0.5mg counts!

Initially this 20mg pred start point is likely too much (not guaranteed) and you’ll have excess sloshing around, you can reduce relatively easily to lower doses. But as your dose gets lower, you’re approaching the PMR wiggly line and you risk going too low, or the PMR may increase. This is why reductions need to be tentative, small, and slow. If you drop 5mg you don’t know if you’re 1,2,3,4 or 5mg too low, and inflammation can quickly build. It might be difficult to catch it, and you risk yoyoing your pred. If you drop 0.5 or 1mg, you’ll only be a squeak below and can hopefully catch it quickly and stabilise.

Some people will get 24 hours benefit from pred, some will get only 12, hence some split their dose to cover the 24.

Causes for PMR aren’t really known. Genetics? Environmental? Stress? Infections? Vaccinations?

Try not to stress about all your tests, I think a lot of us wonder what is REALLY going on when PMR starts, and pred can turn us into worry-warts.

[Oxford8 in reply to Soraya_PMR]

That was a brilliant explanatory post Soraya!. 👍

[Hidden in reply to Soraya_PMR]

Wow ! That makes sense. Very good! I’ll try not to worry about it. Sometimes $hit happens!

[PMRpro Ambassador in reply to Soraya_PMR]

Brilliant!!

[Jenniyr in reply to Soraya_PMR]

That was very helpful Soraya and clarifies a lot.

The apparent unpredictability of flare ups can make one feel so helpless, . I was determined to get off the steroids and hit a very nasty wall at 6.m.g. -it was ghastly but having found going up again doesn't work, I just spent a week in bed feeling awful until it did clear.From then on things improved and I went down to one m.g. quite smoothly. There is light at the end of the tunnel.

[FRnina in reply to Soraya_PMR]

Great Soraya! Easy to visualise and super helpful in explaining the necessity of the very gradual taper.

[Sho-Sho in reply to Soraya_PMR]

Brilliant explanation - every Rheumi and GP should have a copy of that.

Makes huge sense to help with tapering.

[Hildalew in reply to Soraya_PMR]

NOW I get it! Thank you for that brilliantly simple 'visual' explanation.

[Mary63 in reply to Soraya_PMR]

Fantastic explanation!

[DianeA1 in reply to Soraya_PMR]

This is exactly how I have pictured the PMR/Pred relationship in my head!!

[Purplecrow in reply to Soraya_PMR]

Great explanation for a complex illness! 💜🙏🏽💜

[PMRpro Ambassador in reply to Hidden]

The body isn't really healing - it isn't an illness like a puddle that dries up because no water is being added, it is a continuous drip drip which is is being mopped up by the pred. The right amount and everything stays just about dry, too little and the few (or more) drops left over mount up and eventually fill the bucket and overflow in the form of symptoms. It is rarely (though sometimes) a cancer and they must be ruled out before "just" PMR is the choice of diagnosis. Very similar symptoms can also be due to other forms of inflammatory disease - forms of arthritis and even gastrointestinal disorders such as coeliac disease or inflammatory bowel disease.

The anti-inflammatory affect of pred varies from patient to patient and can be anything from 12 to 36 hours, independent of the half-life which is something else.

And exactly - don't worry, sh*t happens and it also goes away again

[Hidden in reply to PMRpro]

All you guys/gals are so awesome

[SheffieldJane]

Oh dear! Know the place. Patience!

[Yellowbluebell in reply to SheffieldJane]

Trouble is I have no patience concerning anything!!x

[PMRpro Ambassador in reply to Yellowbluebell]

PMR is an excellent teacher ...

[bunnymom in reply to PMRpro]

You feeling better... And OH as well?

[PMRpro Ambassador in reply to bunnymom]

Getting there. He can manage 4 flights of stairs for the first time for months!!!! And I don't hurt as much

[Constance13 in reply to PMRpro]

Glad to hear that! How will you carry on from now on? Special diets, rest, prognosis?

Wow! 4 flights of stairs from practically not managing a few steps? Not bad!

Make sure you get YOUR days and don't overdo the careing.

Keep us updated.

Constance

[bunnymom in reply to PMRpro]

Victory on all fronts then. Your husband must be so encouraged and less pain is always better. Glad for you both.

[9lives]

Thanks Joblow, that is so helpful to visualise, I love charts and spreadsheets 🤣x

Carole

[bunnymom]

I could see the chart perfectly in my mind, even with pred head.

[Suet3942]

I did exactly the same thing Joblow, . Taking ages to recover.