Question about flare ups

[sferios]

Hi everyone,

So I learned my lesson (the classic lesson) tapering too quickly. I had been on 25 mg with zero symptoms and then tapered down to 6 mg in about three months. (Yes, yes... I now know that was too fast .)

When I hit 5 mg I got sick with adrenal fatigue symptoms (my first time really experiencing that awfulness). I waited it out two weeks to see if it would go away. (Still no PMR symptoms at this point.)

But affter two weeks at 5 mg the adrenal fatigue symptoms did not go away. They got worse, and then the PMR symptoms came back (neck, shoulders and thighs mainly).

It was at that time (about ten days ago I think) that I came back on the forum and PMRPro and Dorset Lady (and a few others here) convinced me to go back up higher on the pred for seven days. I went up to 9 mg for a few days, then went up to 14 mg. And I've been on 14 mg now for 8 days.

But here's the thing . . . I am *still* having PMR symptoms. They are mild, but they are still there. The fatigue is gone, but I awake each morning with neck and shoulder pain, and my thighs are tender all day long like they used to be when I first got the disease (not as bad, but still tender).

So my question is . . . what is a flare up? Is it simply going too low on the pred, and then you have to go back up to just before the flare started (after a week of an even higher dose)? Or can a flare set you back to a worse place, where you need an even higher dose than the previously stable one?

Another way of asking this is . . . Is a flare up the disease becoming inherently more intense? Or is just tgoing too low on the pred?

I'm asking this because it's hard for me to believe that I might need a higher dose than 14 mg. When I check my PMR journal, I was at 14 mg two months ago with no symptoms, and I continued to taper for six weeks after that, still without any symptoms. I know six weeks was too fast to go from 14 mg to 5 mg (like I said, I learned my lesson), but still I've been thinking that my stable dose is probably around 9 mg. I thought I would stay at 14 mg for a week and then go to 9. But it's been eight days now at 14 and I still have symptoms.

I hope I'm explaining my question correctly here.

Is a flare up when you go too low on the pred and your symptoms get worse but the disease intensity stays the same? Or can a flare make the disease intensity worse, meaning not just an increase in symptoms because you went too low on the pred, but actually the disease manifestation itself increasing such that you need a higher dose of pred than waht was stable for you previously?

Related questions...

Can a flare happen all by itself, even without tapering?

If so, what causes that? Stress?

And most importantly . . . Should I go higher on my dose? I can manage the mild symptoms I have right now at 14 mg, but is it hurtful to me to have these symptoms?

Thank you for any help/advice you can provide.

Emanuel

[PMRpro Ambassador]

" can a flare set you back to a worse place, where you need an even higher dose than the previously stable one?"

It can but usually it is when you get into a yoyo pattern with dose, not after just once.

"Another way of asking this is . . . Is a flare up the disease becoming inherently more intense? Or is just tgoing too low on the pred?"

It can be either - the most common cause for a flare is reducing the pred dose too far or too fast. The other option tends to happen when you have been stable at a dose for some time - maybe months - and then the underlying disease activity ramps up for some reason. Which answers you last question.

However - you reduced the dose so fast that it is impossible to say where it went pear-shaped. I suspect you are pretty much back where you started and that you overshot when you started that precipitate drop from 14mg. You say you aren't too bad at 14mg now - give it a few more days.

There is a very good reason we bang on about going slow and staying at a dose a couple of weeks or more to be sure it is still enough. And I don't think that anyone has ever reduced their dose that fast except to maybe get a PET-CT scan done.

[DorsetLady PMRGCAuk volunteer]

In the link I gave you in last post about flare - it does say you can stay on the increased dose for up to 14 days without impacting the drop back down.

I know you crept up from 5mg to 9mg over 8 or 9 days - and I did say at the time include those days as well as 14mg in the total of 14 - but that’s obviously not worked out as expected.

I think you have to accept that you need a total of 14 days at 14mg - so give yourself a few more days to see if things improve. If they do, then you can follow the procedure in the link - but only drop back to 9mg. If they don’t, then you need to seek medical advice.

We did say at the the time that too fast a taper, and the loss of your mother it would be difficult to get things back under control.

See that PMRpro has replied on ‘what is a flare up’..

[sferios in reply to DorsetLady]

I took 20 mg today. I have been on 14 for nine days with no improvement. I still feel terrible. PMR pain (shoulders, neck, thighs) as well as fatigue and malaise (just a sick feeling all the time, with tension all over my body, like I can't relax).

I'm thinking I will just take 20 mg for a few days, and then drop down to 15 and try to stabilize there.

However, I don't know my stable dose. I tapered from 25 to 5 before feeling symptoms, but I guess it was too fast to know where my stable place really is.

Do you think this is a reasonable decision for me? Should I stay at 20 mg longer than a few days?

[DorsetLady PMRGCAuk volunteer in reply to sferios]

You won’t know until you try- and anything’s worth a try…but as you don’t seem to be getting relief just wondering if there is something else going on besides PMR - but not sure what…

[sferios in reply to DorsetLady]

What else could it be? Are my symptoms described above inconsistent with PMR?

[DorsetLady PMRGCAuk volunteer in reply to sferios]

I don’t know else it could be, sorry, and yes many of the symptoms typically PMR but if increased dose isn’t helping then doctors need to have an open mind… just saying it may not be all down to PMR…

[PMRpro Ambassador in reply to sferios]

There are a few things that can have a polymyalgic presentation. PMR isn't the disease - it is the name given to a set of characteristic symptoms caused by an underlying disorder. Once all the other potential causes are ruled out you can then say it is possibly/probably the PMR that we discuss here, due to an unidentified autoimmune disorder.

EORA/LORA, elderly or late onset RA can present identically to PMR with absolutely no distinguishing features and it can be years before the difference is seen. There are other forms of inflammatory arthritis that are similar.

[sferios in reply to PMRpro]

Oh I'm all-in with a PMR diagnosis now. It matches. I'm not wondering if I have some other autoimmune disease. That's not what I meant. I was responding to DL about whether these symptoms could be something on top of the autoimmune disease. Like the flu or covid or who knows?

I really don't think so. But I've never had a flare like this before. And it seems I'm really having to go up pretty high on the pred to try feel normal. Can tapering the way I did do this? Or are some of these symptoms from something else?

That's what I was asking when DL suggested "something else" might be going on. I don't see what it could be? Fatigue and feeling crappy is a PMR and/or pred withdrawal symptom right? I mean that's basically how I feel other than the neck/shoulders/thigh stuff.

[PMRpro Ambassador in reply to sferios]

Yes, but would also apply with another autoimmune rheumatic illness. It COULD be Covid but your breakneck reduction makes it difficult to sort out what anything is. Part of the going slow is that it makes it easier to work out what might be what.

[sferios in reply to PMRpro]

Yes. That is an important point. I see that very clearly now.

[Zebedee44]

PMR a cannot be rushed, it takes as long as it takes. You have certainly learned the hard way that it cannot be controlled with medication the way most illnesses can, in fact the condition itself is not managed by the pred, only the inflammation.

In your hurry to get your life back on track you have pushed too hard and had a set back. You will probably have many more set backs if you don’t accept the new status quo and let the pred do its job. Without sufficient dose the inflammation is not being managed and the PMR is running amok.

Many of us have taken your position on ridding ourselves of this insidious illness and the required meds to deal with it as quickly as possible. But there are no real fast track remedies. You have to reconsider your entire lifestyle and accept that the meds can facilitate that if you work WITH them and your PMR and not against it. It’s a tortoise and hare situation. And you are currently a tortoise back at the starting line just now, but you won’t always be. You can live comfortably with PMR if you treat it with respect, It’s the only way. Best wishes, Chrissie

[sferios]

Thanks everyone. Part of what happened is that Mayo Clinic told me I did not have PMR, but a new type of mRNA vaccine-induced "syndrome." So when I felt completely better about three months ago, and began my taper (at about 25 mg) . . . and then especially when the taper kept working with zero symptoms all the way down to 6 mg, I thought I was done with whatever this disease was.

Now I believe I have classic PMR. Was it triggered by the vaccine? Sure. (And by stress most likely.)

Did those two random blood tests with slightly elevated CK levels (out of a dozen) mean anything? I have no idea. But after this experience it seems clear to me I have all the same symptoms as you all, and this is not over by a long shot.

[PMRpro Ambassador in reply to sferios]

It doesn't matter what the name is that it is given or what caused it, you had a polymyalgic presentation of something - and it isn't new, however clever they wanted to sound, PMR has been triggered by vaccines in the past, notably the Zostavax shingles vaccine and flu vaccines. PMR has also been triggered by viral illnesses in the past as well - it was always a possibility that Covid or the covid vaccines could/would trigger PMR in persons who were vulnerable. And unless they have some clever way of finding it out, they couldn't tell WHAT triggered it nor how active the disorder is - circumstantially it probably WAS the vaccine, But it COULD be something else. The trigger doesn't usually leave a calling card "I was here".

The pred cured nothing, it is a management strategy, combatting the inflammation created by the deranged immune system. It would be/is required as long as the autoimmune syndrome remains deranged and the only way you find out is tapering the steroid dose at a rate you tolerate until you find the lowest effective dose. If it is going to be a relatively low dose, at the start you won't have too much problem reducing the dose but the lower you get, the closer you get to it and the harder it may become. So "the lower - the slower" is a sensible mantra. 25mg is loads to keep most PMR under control, of course you felt better. Same applied at 20, 15 and 10mg. But there is a good reason for slowing down at 10 and below!

How elevated was the CK? Is it still elevated? Maybe the vaccine caused that, there are other causes including strenuous exercise or cardiac problems and I had a jab that resulted in protracted episodes of paroxsysmal atrial fibrillation.

[sferios in reply to PMRpro]

My first CK was 459 (in the emergency room, when this first started, which got me an initial diagnosis of myositis). That's not very high, but still elevated.

Then I had four or five blood tests with normal CK, until one came back at 604 (or something like that). That led to an MRI that showed no muscle inflammation. No myositis.

I haven't had elevated CK since. I get tested about once a month. In fact, all my blood work is normal, including sed rate.