I've had a fairly decent year. I've got PMR with extracranial GCA / LVV. I've been on 7 megs prednisone for most of that time, upping the dose for a couple of days whenever I've had stress.
For the last 3 weeks, though, I have had lots of aches and pains (hips, knees, shoulders) along with more than my usual fatigue. I tried upping my dose to 8 megs, but with little effect. I then tried going up to 10, with marginal improvement.
One thing I did notice at 10 was that I was better during the day than at night and in the morning (when I am particularly stiff and sore). I take my pred with breakfast. Could that explain that particular pattern?
There have been some stressors lately (travel, a little house remodeling, a wedding), but not that much. I also have some gut issues (IBS, diverticulitis), which have been acting up a little lately.
I've got a rheumy appointment tomorrow, but always like to go in to those fully armed with information. Does any of you lovely people out there have any idea what might be going on here? Thanks
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winfong
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Could be combination of a flare caused by stress [aches and pains indicate that] and the increase to 10mg would probably confirm that - and your adrenals struggling [fatigue].
If it is a flare you need to get that under control first, and then think about the adrenals afterwards….as you know slow taper, small steps, etc, etc….
”..but not that much” 🧐. I’m not wanting to dismiss any other cause but might it be worth just reflecting on what your life has entailed recently? Your diary and your gut may be painting a picture of a step too far?
What is the timeline on these events relative to your problems? Having a husband who is a DIY fanatic, the words “a little house remodelling” gives me chills. In order not to tar you with the same brush, may I ask what you mean by that? Could there be some complaining muscles and ligaments? Pred often doesn’t help much with muscle overuse.
With a morning take of Pred it stands to reason that your days are better. Your inflammatory mediators are put out in the night ready to give you discomfort then and in the morning. Sounds a bit flarish to me.
How often have you found yourself taking a bit extra Pred for stress in the last 6 months? Do you take it just in case or because of niggles that result? Is there any chance that some inadvertent yo-yoing has happened which might explain a less effective repsonse when a flare has arrived?
I think the stressors were more disruptions to my usual routine rather than anything else. The remodeling was someone else swapping out all our old windows for new ones. The wedding was for my nephew, so I wasn't involved other than showing up and being social for a few hours. The travel was our usual 2-day drive between our summer and winter homes. We also had a couple of visitors, but those were my two adult children and their SOs. All of this was over 2 weeks.
The extra pred is usually just bumping up to 10 megs from 7 for a couple of days. I've probably done it 2 times in the last 6 months.
Well I would suggest a flare due to having overdone things a bit!!! Dig your head out of the sand and admit it
The flare protocol adds 5mg to where the flare appeared - 12mg. 10mg made a bit of a difference - I suspect 12mg might do even better.
It didn't need to be much of a flare - remember the dripping tap analogy. Your bucket is full to overflowing and you are feeling it - you need a beer mug to scoop some out.
Well, it must be. Just a little different from the flares I've had before. Those seemed a little more straightforward - obvious, acute stressors; definitely over-doing it physically; quick in - quick out ... I'll let you know what the rheumy thinks.
Have you recently had a Covid vaccine? I share your diagnosis and have been left in a much lowered state since my latest booster. Just want to sleep all the time with viral aches and pains.
Update from rheumy visit ... He thinks it's a flare as well, but was worried it went on so long. Switching me from leflunomide to Rinvoq (he also thinks leflunomide might have contributed to my GI issues (though it could easily have been IBS & diverticulitis). Also getting ESR, CRP & 1 other marker done. We shall see.
Well it is likely to go on as long as you aren't on enough pred to manage the inflammation! In our experience it rarely pokes its head above the parapet only to disappear again.
Well, things seem to be better today. We shall see. Nothing set in stone.
I don't know ... I'm one of those people who really hate pred. Yes, yes, I know it's probably what's keeping my alive. That said, I just can't stand the stuff. Okay, now I've gotten that out of my system ...
Don’t think anyone can say they like Pred…and yes I know it can adversely affect some people more than others… but for many it’s the only option especially with GCA/LVV. Hang in there…
Why wouldn't I like a little white (for me) tablet that gave me my life back with no side effects (I also highly appreciate that I am very lucky there compared to some).
PMR can vary a lot from day to day - and if you keep a diary you often find that a bad day follows on from a good day where you did more than usual. It may not be the next day though which can confuse the issue. Not saying this applies to you but we see people who refuse to accept that they have a condition that requires management to be able to live a relatively pain-free life and that management may mean accepting that some things must be modified or avoided. They indulge themselves in proudly "fighting through" which results in their body sagging under the onslaught - and it catches up with them. If you have dodgy ligaments and tendons and then deliberately go and do something that risks you tripping/falling and that happens, it may take a long time to get back to where you were, may even cause far more damage that won't heal well. You might have considered it was worth it for that few minutes of "I CAN still do it" - but was it really?
Don't kid yourself - few of us actively LIKE pred, I'd be far happier if I didn't have to take any of the medications I'm on, pred included. But I also have to acknowledge that the miracles of medical science have given me years of relatively pain-free life, It isn't as active as I'd have liked but I have to accept that - not only for my safety but for that of others.
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