I have been stable on 3mg since early December and am planning to start a taper to 2.5 mg on Saturday. I had meant to do this, in January but I had covid over Xmas that took me a while to get over. I do have pains in my hands, knees and hips and I get periods of extreme tiredness all of which I am assuming are struggling adrenals (all helped by paracetamol), but a couple of times resently (including this morning) I have been very light headed and wobbly, which is almost exactly how I feel when I start a new taper.
At first I assumed that I had mixed up my pred, and not taken the correct amount, but today I am certain that is not the case. So my question is, has anyone else had similar symptoms, or is it just another case of struggling adrenals.
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jinoadby
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Extreme tiredness and dizzy spell are both classic examples of adrenals struggling...and although random pains could also be that.. I'd say that could be too low a dose of pred for your PMR.
You seem to have had a rough time since Christmas, so I wouldn't even be thinking about tapering... in fact I'd probably be considering a small increase to see if that helps hands, knees and hips...
I was wondering, but as I have had some good days along with the bad days, and as I have 3-4 easy weeks coming up, I thought that maybe a very careful taper might give my adrenals a bit of a kick.
Thank you, I'm going to give it a careful try. At least I now know that the dizzy spells are most likely adrenal problems, and at the first sign of trouble I can always back off.
I would say they are obviously already been prodded nicely since you having better and worse days - I'd stick at 3mg for a while to give the adrenals more time to wake up. No point kicking them harder if all that does is make you feel worse!
I am finding this discussion useful, too. I am stable at 3mg (since end of March) and no pains or dizziness but still a lot of fatigue. Was wondering whether to plough on to a DSNS taper to 2.5mg in a week or two, thinking there's no way around this, or would my adrenals wake up more gently if I stay at 3mg for a month or two? And would this be a good time to ask for a basal cortisol test? (I was sent forms to go for a 'renal profile' blood tests recently - that's not connected to adrenal is it? I am pre-diabetic and my GP is keeping an eye on this. The scores for serum sodium/potassium/creatinine etc were all within normal range.) Thank you.
No, the adrenals are separate glands perched on top of the kidneys DL has a lovely picture in a link if I remember rightly!
Me - I'd stick at 3 for another month or two before doing the next 1/2mg and see if the fatigue improves. This is such a low dose there really is no justification in rushing the taper and feeling even more rubbish. Always give your body to catch up.
Have you cut your carbs? Several have reversed their pre-diabetes by doing so as well as losing weight.
thank you. I've cut down a bit but not remotely doing the 30g thing. I rarely eat cakes, biscuits or chocolates but I do like my potatoes . . . I'm 5'2" and weigh about 7.5 stone and just don't get why I am pre diabetic. You think I should be doing more about carbs even though not overweight?
Pred triggers the release of random spikes of glucose into the blood from the body stores in muscle and liver. That is what increases the Hba1c which is a reflection of the average blood sugar level over the past 3 months. Cutting dietary simple carbs will reduce that contribution to it - not that being pre-diabetic is the end of the world, just some doctors behave as if it is.
Oh ! my goodness DorsetLady, almost like one of my worries answered before even asking 😍! I am now completely off the Pred after a long slow taper and kept wondering if doing the right thing ... I had a 3day in Hospital Jan 21 after completely backing out and found myself on the floor with a big lump on my head . Not a nice experience waiting 19 hours for a bed on a most uncomfortable chair .. They could find nothing about why I had blacked out, and when leaving hospital I gradually started to feel worse than when I went in! At Addenbrooks Hospital we get something called "My Chart" with all our test results , so I decided to take a look and came across the Cortisol results and at least that was something to please me... 23/01/24 at 06.52 =431 and again at 16.31 =265 so seems my Adrenal glands they were working as I had read on H/U that 190 was worrying .. But over the next weeks why were my muscles in pain when they had only been fatigued and I had been getting on so well with my physio .
They gave me a blood pressure tablet on my last day Bisoprolol 2.5mg which I now discover is a "betablocker" which I am allergic to and I discover when reading the leaflet carefully there are two warnings for the doctor to be aware of and monitor , I was not monitored at all , and my leaving notes from hospital with many mistakes , one being ... "not trialed for betablockers" when two years ago I was on Enalapril and had terrible itching and a cough that choked ... It was not normal ...
I’m LVV/ GCA and PMR . My recent consultation with endocrinologist has advised me to get tested when pred is down to 4 and not to drop below 4 without a test. Might be worth have this discussion with your GP
I had what I now assume to have been Covid, caught on a long haul flight. This was mid January. In spite of following sick day rules my overall health is lowered with respiratory symptoms and PMR type pains plus increased exhaustion. My Rheumatologist thinks that it may take months to recover. I am seeing my Endocrinologist for advice on my Adrenal performance. I think the Covid was an important factor. I was doing very well prior to this virus. I have even wondered about long COVID. I have paused my taper.
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