In DorsetLady's analogy, the disease is like water entering a sink through a faucet, and pred is a scoop that removes the water each morning. The pred-scoop has to be big enough to remove the water at an equal or higher rate than the faucet pressure adds water. Otherwise you get a flare.
So far so good.
At the same time, DL writes, "Or it may be an increase in the underlying autoimmune disease activity for some reason and then [the flare] can be sudden."
When I think about the reasons why underlying autoimmune disease activity might increase, it seems obvious to me that stress is the main culprit. Everyone here says it is.
But here's my question . . . Can reducing the pred too much cause enough stress *in itself* that the underlying disease activity *also* increases. Maybe the flare started because you went too low on the pred, but then the resulting stress of the situation causes an increase in disease intensity, and you end up needing even more pred than before.
We could call this a "runaway flare."
I think this may have just happened to me. I was doing fine at 10 mg (on June 20th). Then exactly one month later (July 20th) I had tapered down to 5 mg (yes yes, way too fast). At that point I started experiencing what I think was adrenal fatigue symptoms. And they were just awful. I waited them our for two weeks thinking they might go away as my adrenal glands came back online, but two weeks later I felt even worse. Then my PMR symptoms came back also.
That's when I increased my dose. First I went up to 9 mg, which did nothing. Then I went up to 14 mg, which reduced my adrenal fatigue symptoms, but nine days later my PMR symptoms were even worse. So yesterday I went up to 20 mg, and this morning it appears I am finally feeling a reduction in my PMR symptoms.
In trying to figure out what happened using DL's sink metaphor, the only thing that makes sense is that I had a sort of runaway-type flare. Reducing the pred too fast caused me adrenal fatigue symptoms, and these were so stressful that it ended up increasing my underlying disease activity also.
I'm hoping I can stabilize at 20 mg now, but maybe I'll need to go even higher. And this is depressing to me, because like I said before, I was doing fine at 10 mg previously.
Is my notion of a "runaway flare" a real thing? Has it happened to others?
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I'm probably about to sound rather harsh but I think you would do a lot better if you stopped overthinking and listened to people when they tell you that you are cruising for a bruising!!!!
Irrespective of whether it is a flare due to reducing the dose too far or to the autoimmune disease ramping up, YOU NEED MORE PRED. Because you reduced so fast you really have no idea where it went wrong anyway - in most cases it can take a few weeks before the inflammation builds up enough to cause symptoms. Initially it isn;t that obvious because you are removing some of the inflammation each day and observation does suggest that the autoimmune process does vary from day to day or week to week or even longer. If you plotted the activity, if there was some way to measure it (there isn't that I know of), it would show a sine wave. When the activity is on a waning phase you are able to reduce the pred dose but if you do it too fast you get lower before it starts to increase again and then you find out you have overshot. But when you went very fast - you don't know where.
Are you saying I need more than 20 mg? Yesterday I went up to 20 and today I finally feel substantial relief. My thought is to stabilize at 20 (for at least a month) and then follow all the advice here.
Take note this is new humility. A week ago I was thinking I would take 14 mg for a week and then drop to 10 mg.
Also, my mother used to use the phrase "cruising for a bruising." She's the only person in my life I've ever heard say that. Where did you hear that???
No - I'm saying you need to be patient! I know this world expects everything to work instantly but the human body and medicine isn't like that,
You have "substantial relief" after 1 day on 20, give it a week and it should improve a lot more. Behave like someone who isn't well - your body needs some rest.
I lived in Bavaria when it was part of the American sector still and had a lot of contact with the base where we lived. We had army neighbours and the wife used the expression a lot.
"Behave like someone who isn't well." <-- Thank you. This is key I think.
The Mayo clinic doctor convinced me I didn't have PMR, so when I started feeling better I that maybe it was over, that I had some new type of auto-antibodies from the vaccine that had finally faded away. It was wishful thinking.
And now I believe the Mayo doc had his own biases. Two things he said to me... First (and I'm not joking) he said "My PMR patients are little old ladies." Second, he said the only reason he got the covid vaccine is because he was forced to get it for his job.
So I think he was biased. In other words, even the "prestigious" rheumatologists at the Mayo clinic don't know what they are talking about.
From now on I'm listening to the old ladies.
(The pic is me and my mom back in 2016. She always thought I was cruising for a bruising, and she was right.)
I wouldn't want to be managed by a doctor with that sort of view of his patients - that is sheer arrogance. There are a lot of us who developed PMR as relatively young professional women occupying skilled positions and in our 50s. As DL says - he might end up with his head in his hands if he said it around here - cheeky little brat.
He obviously doesn't understand the nature of the disorder. PMR is the name for a set of symptoms and it can have various underlying causes - and to us and our "in house" experts it is increasingly clear that there are several. Pred is a universal antiinflammatory, it will work for them all but it doesn't mean that the autoimmune activity is different.
Well I just got my retainer refunded. I had to put down a $5,000 deposit just to get into the clinic. Then I had only had one appointment (back in April), which cost $800. Then a few days ago they returned the rest of my deposit to me ($4,200). So I'm done with them.
I've only had good experiences with my rheumy here in New Mexico. She's the one who diagnosed me with PMR at the beginning (even after the emergency room doctor diagnosed me--incorrectly--with myositis).
She also prescribes me with as much pred as I want, and respects me using this forum (and your help) to self dose. I told her all about you all during my last appointment and she understood instantly the value of a PMR community.
Probably depends which you go to - Rochester is the one which has had a PMR reputation because they have a history of research with a local Scandinavian heritage population to call on.
Your Mom looks lovely and joyful. I’ve recently lost mine, it is devastating to say the least. Treat your body with the care it needs and listen to these wonderful people on here . All will be well, just take it very, very slowly.
Pretty sure I'm not "a little old lady". Sack him and find a doc who knows what he's talking about. "Cruising for a bruising" was a pretty common expression when I was growing up, not heard it much recently though.
I come from Harlow in Essex where a lot of people were ex Londoners. My first husband from Stevenage, also a new town near to London. I think we started using that term in adulthood, maybe I picked it up from him (he did bruise me by the way) but it is a term we have used for a long time.
I was going to say that I thought the expression Cruising for a bruising was an English thing, I have heard it many times in my life and have used it myself
You're initial thought of stabilising at 20 for a month is a good idea. You have to give things time to settle. Symptoms can wax and wane on a daily basis, so look at trends over a longer time. Hopefully your needed dose will be significantly lower but you need to feel your way towards it with a sensible taper.
Are you able to put the illness and pred levels to the back of your mind for a bit?
A lot of us have calendars of tapers in our heads - what level we'll be on next month, the month after etc. After a while the realism comes in that sometimes this works out but sometimes it doesn't, so if we can't stop doing this (I can't) it's best to adopt a pragmatic attitude.
"Are you able to put the illness and pred levels to the back of your mind for a bit?"
That would be wonderful! I wish I could do that. But it's all mixed together with how I am living my life. I need to make major changes, but I don't know how.
It's hard to explain. If I mention I work too hard, that won't even come close to describing what's happening. I'm in the epicenter of the US government's response to the opioid crisis. A year ago I developed the first immunoassay test strip that can reliably detect fentanyl in illicit drugs (it took seven years). And now I just got hired by SAMHSA to help cities and counties across the US start distribution programs. (I told them I cannot fly because of my autoimmune disease, so they're going to set up zoom trainings for me.)
But that's only a tiny part of what I'm doing. Among other projects, I've been working in a collaboration with the University of Australia to produce a *quantitative* fentanyl rapid test. And we are close to succeeding. This would allow opioid consumers to test the potency of their illicit fentanyl products prior to consumption. And this is *far* more important than fentanyl test strips, because the strips only allow someone to detect fentanyl contamination in *non-opioid* drugs. Hundreds of people a year are dying from fentanyl-contaminated cocaine, meth and other non-opioids. But we have more than 100,000 people a year dying from intentionally consuming fentanyl products without knowing the potency. A potency test, therefore, has the potential to save not hundreds, but thousands or even tens of thousands of lives a year.
And now little old me is in a position to get the federal government (with its six billion dollars in opioid settlement money) to embrace this. It's the best solution we have, and there's nobody else in a position to do it. So I feel a moral responsibility not to quit.
But is it killing me?
I just had a palpable, visceral experience of how stress impacts my disease. This flare was a lesson in much more than just tapering too quickly. It was a lesson in how I am living my life. I had a stark awakening this past month that I will never be able to get off prednisone if I don't slow down. I'm not just a "stress head." I have been "Mr. Cortisol" for decades.
I appreciate all of you here so much for helping me learn about this disease and managing the meds. But can you can help me manage my life? Many of you are just like me. I know because I have read some of your stories. How do I live without killing myself from stress? How did *you* do it? How much did you give up? Did you have to give up caring as well? This is what scares me most.
I'm so sorry, my heart goes out to you. I can feel the pressure you are under and your dilemma.
When you posted before about your fantastic work, I think a lot of us answered that it is perfectly possible to carry on with PMR and working, so long as you make adjustments - take the pressure off, delegate, care for yourself and focus on the things only you can do. Basically we said you don't have to give up, you have to adjust.
What I'm hearing now is that before this happened you were already coping with huge amounts of stress, and the illness has tipped you into the place where you feel you can't cope. And it makes you feel ill, so you are tending to think in worst case scenarios.
With all your contacts, is there anyone you can talk this through with who has skills in helping to reduce work pressures as well as working through the emotional impact of illness and grief? Honestly, this will really help you to get your head and heart round things so you can get into a clearer place about what you really want, so make sound decisions.
But until then, PMR on its own does not present any immediate danger so get your pred levels stabilised so you feel better, adjust your work as best you can, and, just a suggestion, don't make any major decisions until you're in a better place. One way of looking at this is it has given you a relatively benign prod to make some life changes for a healthier future. Things will get much better!
Thank you Viveka. I do think the adrenal fatigue and/or disease symptoms (whichever they are) are affecting my thinking. But also it's true I'm overworking myself. So stabilize on the right dose of pred first, and then DON'T FORGET THIS EXPERIENCE, and make the right changes once I'm feeling better.
No wonder you're under stress!! I just watched (meaning I was sitting in my office, beverage in hand, doing nothing but watching) the six (or was it 8?) episodes of Painkillers on Netflix and I feel as if my head's been messed with permanently. It's about the bloody Sacklers and their 6 billion dollar settlement for lying about the addictive properties of oxycontin - without, I believe, having to admit to any wrongdoing (how grim is that?) and I felt like a wet dishrag for two days afterwards. Thanks for what you're doing now - and yes, take it a bit easier for your own health.
My wife and I are going to start that series tonight. Also, have you heard the news? The supreme court on Thursday agreed to hear to the Biden administration's appeal of the settlement. Like many others, the justice department doesn't like the immunity given to the Sackler family. I agree, but it has had the ironic twist of putting a pause on the $6 billion, much of which was going to SAMHSA to buy fentanyl testing strips.
Perhaps this is good for my health . . . slowing down my work for a bit.
And here is the ultimate irony . . . when congress cracked down on oxycontin prescriptions in 2016, it reduced "prescription-related" overdose deaths by sixty percent with a year. Lawmakers patted themselves on the back for the 3,000 or so deaths they prevented. But he cartels immediately began filling the gap with counterfiet oxy's that contain fentanyl, and the number of "non-prescription" opioid deaths skyrocketed.
The solution to America's opioid crisis is not easy.
The entire government has been captured by the pharmaceutical companies, I fear. Pfizer has paid something like 36 billion in fines over the last ten years - without having to admit any culpability. I'm glad for your rest (you've really earned it) but I think the problem with people and prescription related brain candy needs a better solution than fixing the law. The basic problem is finding out why people are in pain (I think big ag and processed food might have something to do with it) and why they choose to deal with it with a drug. Such a thorny little problem - but thanks for your service, seriously. Let us all know what you think about the series Painkillers.
So true. I have my tapering schedule plotted out through next September. At least it is in Excel so it is easy to update when it all gets blown up to smithereens. 😄
I did mean September 2024. Started at 20 one year ago and on 7mg reducing at .5 a month now. Once I get below 5 I will start reducing at .25 a month. Also thinking at holding at 5 through year end with the holidays.
It’s just an overall look to see where I might be Sept 2024. And yes I know this could all be in vain. PMR is going to do what it wants to do and not be on my schedule.
Agree it is good to have a plan, but just remember it’s only that -and may need amending . Hope not, but as many know, life does have a habit of not going the way we want.
All we are saying is that some patients get disheartened when it all goes pear shaped.. wouldn’t want you to be one.
Actually it’s PMRpro’s analogy, but I agree with her comments above……just accept you have overshot the mark… and you can’t always point the exact reason for a flare…. other than the obvious - too low a dose.
You may have felt fine at 10mg before…..but you don’t know whether at that dose the inflammation was totally under control, just controlled or teetering on the edge - I suspect the latter….
But as we have said, because you tapered too quickly you will never know….
Holy cow! Endocrinology is really complicated. This article taught me so much but I also feel like I just scratched the surface about the pituitary-adrenal axis.
Contrary to what I've read elsewhere, the above article says that the average amount of cortisol produced by the adrenals in a given day is only about 9.4 - 9.9 mg (about 10 mg/day). It also says that the typical *maximum* amount of cortisol in our blood at any given moment is about 1.2 mg.
What blew me away after reading this is that pred is thought to be about four times more potent of a glucocorticosteroid than cortisol. This means if you take 10 mg of pred, you're basically taking the equivalent of 40 mg of cortisol, which is almost 40 times more than the maximum amount you have floating around in your blood at any given moment!
Wowza!
Also, one thing I don't yet understand is why they consider 8 mg of pred to be the point where your adrenals stop producing cortisol on their own? 8 mg of pred is still the equivalent of 32 mg of cortisol, which is still a whopping three times higher than the average amount produced by the adrenals daily, according to the article above.
So doesn't it make more sense our adrenals would shut down at a much lower dose than 8 mg? Where to do they get the 8 from?
It isn't that simple - and noone can agree on the levels of synthetic steroid required to do what. It isn't a simle equation, there are multiple strings all wizzing around (or not) and which have to be organised to get proper function. Apart from anything else, hydrocortisone has a very short half life so appears and goes away quickly. Pred has a much longer half life. And the effect it exerts lasts far longer than it is present in the body, the effect of hydrocortisone lasts beyond it being excreted but nothing like as long.
another unknown i the amount any individual actually absorbs of the pred. You may swallo 10 mgm but lots of factors will influence how much actually gets into the blood. That might be why some people experience fatigue on higher doses than others.
Hi Emanuel, it sounds as if finally you have heard the message we “little old ladies” have been telling you, and I would say YES, you started a runaway PMR by tapering too fast.
Your expensive Mayo clinic consultant probably sees a lot of older ladies presenting with the same symptoms as you. The Covid vaccine induced version of PMR may well differ from the “little old lady” version and may not be fully researched but should be treated with the same respect. Likewise the required treatment plan with pred.
The higher dose of 20mg will almost certainly mop up all the water in your sink and you now have to taper far more realistically if you don’t want to feel like a “little old lady”. You CAN a have a life alongside the pred, just accept it. Being a stress head has got you where you are at 53, your body has objected, now you need to support yourself and the people who depend on you by “getting with the programme”.
Four days now on 20 mg and I am finally feeling better. Looking back on my PMR journal, the last time I was on 20 mg was May 15th, exactly three months ago. At that time I tapered from 20 to 5 mg in two months (too fast I get it).
During those two-months I had no symptoms until the very end (July 18th to be exact). Then they got worse and worse it was just awful. They began with fatigue, nausea and diarrhea, then the PMR pain came back about a week later. I went up to 9 mg for four days. Still got worse. Then 15 mg for a week. Still getting worse. Then 20 mg four days ago and I am finally feeling better.
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