Do flares affect the overall time to remission?

[clieder]

I know it will be what it will be, but I'm wondering if anyone can say whether one or more flares of duration have seemingly increased the overall time to full remission. In other words, if any sign of a flare could be headed off, will that potentially reduce the overall time on prednisone? Does full blown, relatively untreated inflammation set the whole process back in its normal progression? That point struck me when someone pointed out that younger people diagnosed quickly and with proper reduction techniques seem to "complete" the process in shorter periods of time.

[HeronNS]

I can only speculate. Given that pred doesn't do anything to cure the actual disease process (production of inflammation and pain-causing cytokines) one would think a flare would not really affect total time before remission is achieved. On the other hand we are told that untreated PMR is more likely to lead to the development of GCA, a much more serious situation. This is probably because pred mops up the daily dose of inflammation thus keeping it in check. But, there again, maybe it is doing more than just that. I don't know if untreated PMR goes into remission in the same average time frame as treated PMR. Probably it would be too hard to find a large enough control group to study it!

If it's "younger" people who are achieving remission more quickly this may be a function more of their age and likelihood of fewer comorbidities than in older individuals, given that many older people are also following very good tapering protocols. But, as I said, I'm only speculating.

[clieder in reply to HeronNS]

Perhaps someday that study will be done. In the meantime, we act on what we do know.

[DorsetLady PMRGCAuk volunteer]

I think it’s a bit more complicated than that. Obviously if you have a flare and have to increase the dose for a few weeks then the overall length of time on the drugs will be inevitably be increased. Plus of course it seems that if you have one flare you are likely to have more and each one may become more difficult to overcome.

From my personal point of view it took 18 months for my GCA to be diagnosed - I had no flares - but it still took another 4 & half years to go into remission. Had I been diagnosed earlier I wouldn’t have needed to start at such a high dose, so maybe the length of time on drugs would have been less - but I don’t know!

As for younger people being able to get off the steroids more quickly- maybe it’s because they don’t have other health issues that maybe older patients do.

[clieder in reply to DorsetLady]

So many unknowns! Does one flare lead to more flares? Are we then "flare prone?" Sure hope not.

[DorsetLady PMRGCAuk volunteer in reply to clieder]

Not necessarily - but I do think some people are more prone than others. If you read the guidelines, it does mention what action to take in the case if a relapse - so it is obviously quite common.

As we’ve discussed on here before not everybody’s illness follows exactly the same course, and some relapses are brought in by too fast a reduction - not all I hasten to add - but too many from people’s posts.

See para from guidelines -

“We recommend the following approach to relapse of disease.

Relapse is the recurrence of symptoms of PMR or onset of GCA, and not just unexplained raised ESR or CRP [6].

Treatment of relapse:

. Clinical features of GCA: treat as GCA (usually oral prednisolone 40–60 mg daily) (see GCA guideline)

. Clinical features of PMR: increase prednisolone to previous higher dose.

. Single i.m. injection of methylprednisolone (depo- medrone) 120mg can also be used.

. Further relapses: consider introducing DMARD therapy after two relapses”

[clieder in reply to DorsetLady]

I was not reducing at the time and, as is the case for so many on here, dealing with other elements that totally confused the PMR/not PMR question. It will be really helpful to keep this summary handy as I start reducing from where I left off before this blip. So far, so good. Hope it stays nice and even on the way down. Five, here I come! Now, we'll see if those adrenals are ready to wake up. Thanks!

[Hidden]

My brain tired at the moment so excuse me if I have misunderstood. Basically if a flare is caused by reducing too quickly or by too much then relapse is more likely. Any sign of a flare is often headed off by rest or pred increase. If you drop by too much or too fast, you are scrambling to find that dose which helped best. So with little evidence! I might want to suggest that yes, flares may (italics) effect the overall time to remission. That said... PMR lasts as long as it lasts. And my suggestion is based on fact the pred reduction, not add on's or other stressors or illnesses impact on length of active PMR.

How you would measure those effectively would probably take a large longditudinal study, collecting clinical/medical, psychological and sociological aspects of pmr and the lives of the punters. Even then every illness has its own medical narrative. At the moment that narrative is not sitting comfortably with the narratives of many of the people who contribute here. But remember not all people with pmr visit the pmrgcauk forum/charity. Sorry if this doesn't make sense. It was intended to "answer" all aspects of your question!

[clieder in reply to Hidden]

It makes perfect sense to me. Those are the very things rumbling around in my head.

[PMRpro Ambassador]

"... when someone pointed out that younger people diagnosed quickly and with proper reduction techniques seem to "complete" the process in shorter periods of time."

I don't think there is any evidence that is the case at all I fear, none I have come across at least. For one thing - younger people usually spend a long time searching for a diagnosis because they are young. For another, the pred does nothing to the underlying cause of the PMR symptoms, just mops up the mess - like the floorcloth keeping the spill mopped up doesn't repair the dodgy tap that is dripping.

Having frequent flares and having to increase the dose will increase the total amount of pred you take. But they are due to the ongoing activity of the disease, the water is still running in the pipes feeding the dripping tap. You have to turn the water off at the stopcock to stop it. Whether that also keeps the underlying disease process in action I don't know, no reason why it should.

[clieder in reply to PMRpro]

Great analogy. I guess I just feel that the condition is trying to accomplish something that our cells have misunderstood and I don't know if it will meet its goal faster if we let it have its way to a certain point or keep it totally at bay. A flare was like starting over for me. The only thing different was my having some clue what would happen next and a lot more information about how to approach it because a whole bunch of people are dealing with this who understand and commiserate.

[PMRpro Ambassador in reply to clieder]

I don't think it knows what its goal is - it just keeps chugging along until some unknown factor is missing or reintroduced. Since we have no idea at all what it is that causes the malfunction it could be either. Or both. Or something else altogether ...

[clieder in reply to PMRpro]

So well put. Aye, there's the rub.

[Soraya_PMR]

When does remission occur? And when does it become a struggle to kick start the adrenals? Or a mix of both!

People can have adrenal insufficiency as they age, like all body systems they don’t work as well. Did the adrenal insufficiency cause the PMR in the first place? Did the pred send the adrenals to ‘sleep’? Or is reduction of pred just putting some people back into the adrenal insufficiency they already had? Are younger people less likely to encounter adrenal problems?

[clieder in reply to Soraya_PMR]

Good point. Had not even entered the adrenals at my age into the equation as I haven't yet reached a low enough dosage to test that.

[clieder]

So much of my musing is about when to act on what appear to be symptoms of a flare. Just wish we knew more than we do about how unintentionally leaving something inflamed impacts on the whole and how to know when it is PMR/GCA inflammation vs. withdrawal or even something physiological or stress. This forum is filled with that guessing game. It would seem that, if the collective we knew that waiting and not acting on symptoms would prolong the life of the disorder, we would opt to increase the dosage and figure the rest out later. (And doctors would not insist that patients keep reducing relentlessly. Luckily, not my rheumy!) Instead, my inclination was to try to figure it out and then up the prednisone. Since it was my first flare, and so interspersed with S1 and piriformis issues, it took me a long time to figure out what was going on and I only hope I did not add another year to my allotted journey. Thank you for your thoughtful responses. I know it was kind of vague and probably has no answers. Just needed help sorting it out.

[HeronNS in reply to clieder]

It looks like the consensus is you will not have added another year to your allotted journey. All that may happen is the road will be either more or less bumpy. Let's hope for smooth way ahead!