Last week I had a call from the GP surgery to arrange a blood test "to check inflammation levels". This is the first time since I was diagnosed in 2020.I'm currently in the second week of slow reduction from 2mg to 1.75. All was going well but recent events have meant I've been doing too much and it's left me feeling exhausted with a recurrence of what I call "the shivers" - happens at night feeling very cold, shivering, racing heartbeat. Something that hasn't happened I think since I was reducing from about 5 or 6 mg.
Sorry for the long explanation but my question is should I increase pred before next week's appointment ? Should I take pred in the morning on the day of the test? My GP, who has left me to manage my dosage until now, is going to "review" my meds. I'm hoping this doesn't mean forcing me to reduce too quickly. If the inflammation is low surely this means dose is ok?
Thanks as always for what you do 🙏
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Clarbeston
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It sounds like your adrenal glands have not got back to normal or reliable function yet. This means in your case that you might feel well on a normal day but given extra stress on the body from over doing it, physically or mentally you can’t cope. You then get the weak Wobblies and feel exhausted. I think nighttime is particularly bad because at midnight your cortisol is naturally at its lowest and before your adrenal axis kicks in for your early morning cortisol surge, you can feel the lack.
This is a common by product of being on long term Pred and until your adrenal glands have learned to work again, you will get this problem. All it means is that the cortisol in abundance from Pred has meant your adrenal glands haven’t needed to produce Cortisol, your natural steroid. Your low dose of Pred doesn’t cover all your normal daily needs for steroid and your adrenal glands haven’t realised yet.
The only way to regain proper adrenal function is by keeping the Pred low to remind the body it needs to step up now. This can take months and months. So far your body has managed to step up its cortisol production in line with your reductions (under 10mg) and had a wobble between 5-6mg. If you put your dose up it means the body just tells its adrenals is to slack off again. If you reduce too fast, your body can have a crisis. Really slow reductions are important and avoiding over doing it.
This has nothing to do with PMR and inflammation and your GP should know about this phenomenon but some forget about it or are of the opinion that it recovers more quickly than it does in reality. You could ask for an early morning cortisol test and for this you have to miss your morning Pred dose and take it after the test.
Regards PMR, presumably you are comfortable and have no pain? If you are fine, regardless of that, your adrenal function being on the edge of coping should mean your GP shouldn’t ask for a fast reduction. Do go to the FAQ’s on this page and go to A for Adrenals so you get a full understanding of this before you see your GP. Inflammation levels aren’t always a reliable measure of PMR activity and aren’t specific to PMR so how you are is an important guide.
Saying all this, the GP may want to rule out other causes if it keeps happening and check your cardiac function is ok for example. They might want to do extra tests like electrolytes but if you haven’t had any for a while, I would hope they would do all these basics too.
Would agree with SnazzyD and inflammation blood tests aren’t going to be any help in finding out the state of them…a basal cortisol test would be more useful.
Thank you, I'll ask about a basal cortisol test. I do think my adrenal function might be struggling as I do have the periods of fatigue and occasionally feel weepy for no discernable reason.
Sounds about right. I found I was weepy about 5pm every day and couldn’t cope with anything. The severity of these symptoms can be very variable between people or even day to day. Don’t underestimate good or positive exciting times either.
My advice is always to wait and see what transpires - it may never happen. And otherwise - Snazzy has said it all.
I would say that I don't think you should continue this current taper - slow right down now, take longer for each step and rest for a month or two between. Especially when events conspire against you!
I had the call like that too and when I turned up it was a Thyroid blood test not CPR. As a consequence I had taken my Thyroid meds that morning so appeared to be HypER not Hypo - all hell was let loose so I asked for a retest and got it!
"If the inflammation is low surely this means dose is ok?" The short answer is Maybe, but....
Yes, if the daily dose of Pred is balancing the amount of inflammation produced every morning. It might also mean however than your PMR has indeed gone into remission so your Pred dose isn't need for the PMR but it is needed for what sounds very like your sub-normal cortisol output and to prevent you having an Adrenal crisis. So have this fact uppermost in your mind if your ESR/CRP results come back as normal just incase your GP says "Your PMR is gone. Stop the Pred".
One other thing to consider is that around 20% of people don't have raised markers anyway, even on first diagnosis when they are pretty unwell. Since you have never had an ESR/CRP blood test (and I guessing never, even when in full health ?) you have no baseline reference point.
My first consultant who called himself an expert in PMR and GCA, did not believe in secondary adrenal insufficiency and told me that I would not struggle with stopping Pred. He also was of the opinion that if my ESR/CRP results were normal, then the PMR had gone, irrespective of what dose I was on. He refused to understand what I described as the difference between a full blown flare ( increase in disease activity due to higher IL6 output) versus overshooting my optimal dose and therefore "the bucket of inflammation overflowing". I always maintain that there is a big difference between the two especially as Drs get really fixated on patients who relapse.
Similar to you, my GP sent me a text last week to say that my blood test results are "Reassuring but showed evidence of PMR with inflammation & to only reduce Pred if pain controlled". That's all I get, I never get details such as you folks quote.
I've been hovering between 5mg down to 4mg and get really tired around pm each day and can nod off for half an hour. I take the meds at about 3.00 am daily.
At 4mg, I noticed stiffness in my shoulders and hands, as if arthritic, on waking, which gradually eases off as I get moving. So I went back up to 5mg for a couple of days, which means I wake with less stiffness and move easier. I'm never in pain; it's just stiffness and lack of movement, like lifting arms/legs in the shower.
I figure I'll go back to 4mg for a few more days and note the extent of the stiffness carefully.
Have I just got a high pain threshold? As the only pain I remember with this PMR was in the early stages, once I got on the pred I've never had pain as such just the stiffness and odd feeling in certain bones like feet, ankles, knee etc.
Does sound as if they are a bit more realistic about what the results mean though!!! Those stiffness signs are almost certainly your body telling you that 4mg isn't quite enough - and what I would take from your doctor's comment is that the markers are on the high end of normal or even slightly raised and/or higher than you have been in the past which parallels with the appearance of early signs of a flare. If you are notably better at 5mg, I would stay at 5mg.
Don't try it too often, every few months is plenty, Otherwise you run the risk of getting into a yoyo patterns and that can make it more difficult over time.
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