Arriving here (from the Patient site) after joining "club zero"

[DAN38655]

I've been away from the PMR forum world for some time, having learned to manage my condition more easily over the years.

I had worked my way down to a very low prednisone dosage requirement, which always fluctuated seasonally but which I got down to 1/2mg/day for some weeks last winter (but then needed up to 2.5mg/day this past summer).

This winter, I had several dentistry appointments in January during "peak COVID" times, so I had stopped taking prednisone (dropped from 1/2mg to 0mg) in the hopes of boosting my immune response.

Well it seems that at such a busy time for me that I then forgot to resume taking the prednisone, and did not see a significant recurrence of the typical arthritic ( mainly bursitis) issues that I might have expected.

However, my weight dropped from an already-low 138lbs to 127lbs, which alarmed me as this occurred within just two weeks time. So, in response, I continued my active lifestyle but began eating more often (and have by now returned to a higher 135lbs after 4 weeks). Presumably this modest weight rebound is because my "tolerance" for the prednisone had somewhat worn off over that period of weeks as my body's steroidal balance found a new equilibrium.

So here I am now at zero prednisone and 135lbs, and having noticed that increasing my weight upwards from 135lbs at this point seems to bring on hints of my earlier PMR symptoms (occasional ear ache, stiffer fingers/joints and fatigue).

That's about it for now. I am passing on my optimism, and will be reporting back on any significant changes (I do expect to be able to gain back some more pounds over the long term, just hoping not to need to go back to taking pred).

If/as any symptoms recur, I will firstly be trying to lose a couple of pounds (if the symptoms don't force the issue by themselves). I have become a believer in a strong correlation between weight gain/loss and the resulting affect on one's prednisone dosage requirement, which I feel has troubling implications with respect to one becoming more dependent on prednisone (with it's seemingly inevitable weight gaining tendencies).

[PMRpro Ambassador]

Hello - long time no hear! Welcome over here ...

[SheffieldJane]

That is all very instructive and inspiring. Thanks for sharing it. That level of active management and understanding is definitely the way forward.

[whitefishbay]

Oh to be at 127 or 135 lbs.

[Flivoless in reply to whitefishbay]

Yes I can just about remember being around this weight. I think I was about 12.

[whitefishbay in reply to Flivoless]

Me too. I just need to lose two stone. 😂

[PMRpro Ambassador in reply to Flivoless]

I remember passing it on the way up ... Maybe a bit sooner than that

[DAN38655 in reply to whitefishbay]

For me, having PMR, being at a low weight is actually not so good with respect to managing symptoms using less prednisone.

Having weight to lose means that one has the ability to "fast" away their inflammatory symptoms without taking more prednisone. I myself might have lacked any motivation to lose a few pounds in conjunction with a lower pred dosage when my symptoms of fatigue had a grip on me, but when I finally went to zero my weight plummeted which no doubt allowed me to avoid worse symptoms and to thus stay at zero.

That prednisone causes weight gain seems to be it's worst side-effect, because if it caused weight loss instead, it would likely act much more effectively at managing PMR symptoms.

One good thing about weight loss is that it works to prevent inflammation even before significant weight loss has yet occurred. Just the "delta" or change in daily weight per day is what has such a profound effect on inflammation, meaning that it can be useful even in the short term.

[LemonZest11]

Long may it continue Dan … all the very best!

[PMRCanada]

Thanks for checking in and providing your interesting insights. Hope you are able to stay a member of “club 0”.

[pmr_nikola]

Based on the pic you provided it seems that if you lost any more weight, the wind would blow you away :).

I have also noticed seasonal fluctuation of pred and need to up the dose during the summer. I wonder if this is due to weather or the fact that we are more active during the nice weather ( MT biker here). I have gone few times down to 1.5mg and then had to up to 2-3mg during summer. As far as weight, it has not changed much during my PMR trip ( +/- few lb).

[DAN38655 in reply to pmr_nikola]

Hi, I had posted about my seasonal fluctuation in years past , but on the old site.

I had been wondering for years about this and finally talked to someone (an auto-immune sufferer herself who happens to be the wife of a doctor) who had an explanation. She told me that it is the temperature of body tissues that affects the inflammatory response, higher temperature causes greater inflammatory response.

Prior to that, I had my own suspicions having to do with either the prednisone degrading in hot conditions or with our seasonal increase in air pollution.

[Nextoneplease]

Hello DAN and welcome 😊

Am glad you’re doing so well - long may it continue !

Am fascinated particularly by this:

“ I have become a believer in a strong correlation between weight gain/loss and the resulting affect on one's prednisone dosage requirement, which I feel has troubling implications with respect to one becoming more dependent on prednisone (with it's seemingly inevitable weight gaining tendencies).”

Could you explain further when you have a moment please? Bit alarming as I am very gradually gaining weight…..

Thanks and good luck x

[DAN38655 in reply to Nextoneplease]

To clarify what I meant, it is generally true that losing weight decreases inflammatory response, which I had read about and which my rheumatologist agreed with.

As for the prednisone then, since it promotes weight gain, this effect is most unhelpful even though the prednisone still reduces inflammation no matter what weight one is at.

If prednisone had the opposite effect on one's weight, I suspect that it would be found to be much more effective over the longer term, allowing a faster tapering off of the dosage.

[Nextoneplease in reply to DAN38655]

Thank you DAN 😊