Hi, Having been diagnosed with PMR in early summer 2020, and reducing smoothly from 30mg of pred, to 12mg I'm really struggling to reduce any lower, and would appreciated advice.
Three times now I've gone down to 11mg and hit a wall of fatigue, which was never a symptom with the original condition. The first time I was really struggling with exhaustion and general inability to function for a couple of weeks before the doctor put me back to 20mg for a week, then over several months reduced me fairly easily and comfortably to 11mg , where again I was immediately wiped out .
At that point, last September, I was referred to the rheumatologist, who put me on methotrexate, (although I already had low CRP levels ) and since then, after giving it time to get into my system, on January 1st I again reduced to 11mg and again felt consistently dreadful and am incapable of doing anything much in a day. Putting away the online groceries is enough to finish me off. I have spoken to a practice nurse at the rheumatology department, who advised me I need to shock my system into producing its own cortisol, and to stay at this dose, 11mg, for a further month then reduce by .5mg.
Through my reading, and advice here, I do understand this situation but my worry is that its now almost 5 weeks since I started this tapered reduction, and for 4 of those I've been feeling really grim and incapable of managing much more than getting up and dressed. Please, how long would one expect to wait before the system reacted by kicking back in and i start to feel human again ? Before the last reduction I felt totally normal, now I am weak and useless. If i try to push myself into anything, i get dizzy and the brain fog worsens. I am hoping that this is normal and things will improve soon, but I am starting to feel very despondent. Occasionally in the evenings i feel a little brighter mentally, but otherwise it just doesnt lift.
Many thanks for your patience in reading such a long and negative post, advise me please !
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Ann1A
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This nurse seems to have a strange idea about how adrenal functions returns - you can't "shock" it into action! You need to remain at a lower dose than the amount of corticosteroid your body requires over a protracted period - and I seriously doubt a month is long enough. Sorry to sound so negative.
I wonder why she didn't suggest a 1/2mg drop from 12mg - it would make far more sense than saying do it next time. I would try one of the slowed tapers we bang on about here all the time to get from 12 to 11.5mg and see how you fare with that. You will find them here
It is interesting though - in theory you shouldn't be anywhere near the adrenal insufficiency sort of dose but I think there seems to be increasing numbers of people struggling with fatigue at relatively high doses of pred. I wonder if it is a longer term effect of the stress of the last 2 years????
thankyou, thats pretty much what i hoped to hear, that it takes longer and plod on. I should've said I did use a slow taper. but being here, 11mg, now, its too late to go back to 12mg and drop .5 instead. So i take heart from it being too soon, and will carry on.
“I should've said I did use a slow taper. but being here, 11mg, now, its too late to go back to 12mg and drop .5 instead. “..
Why is it too late? , if you are feeling rubbish at 11mg, then go back to 12mg or higher if needed - get back to feeling better - and then restart your taper 0.5mg a time again.
There is absolutely no point in trying to tough it out on a dose that is not enough - and certainly no glory.
Life with PMR is trying to maintain your quality of life - not pleasing the doctor.
Yes I can understand and appreciate that, but the problem is, she is going by the textbook. Whilst that may work in some patients, it doesn’t work for all, and if it doesn’t work for you she needs to know.
Nicely and politely, of course, but get your point across.
Hi Ann1A.Sorry you've been having such a challenging time. Others with more knowledge will be along soon but I think it's important to say that the steroids don't cure PMR, they merely keep levels of inflammation, caused by the condition, down. It may be that your polymyalgia is still quite active and you still need more than 11mg of pred to keep current levels of inflammation under control for a while.
I'm not sure you can actually 'shock' your adrenals back into action though! As you already are aware, taking steroids long term results in the adrenals 'going to sleep' as they recognise that the steroids are providing the cortisol so they don't need to.
It's usually anywhere from around 7.5mg down (with occasional higher & lower variations) when the shortfall of cortisol....that's no longer being provided because of lower doses of pred.....begins to register with the adrenals and they hopefully start to 'wake up' and kick in again. It has to be a slow, gradual and gentle process though and I certainly wouldn't advocate anything that might 'shock' them into action....that could result in an adrenal crisis...which can be a life threatening situation.
I definitely think further discussion with a competent medical professional would benefit you though....if only to offer you some reassurance.
thankyou for responding, yes its a mystery, it 'should' be at 7.5 that trouble can start, just with me its been 11 three times. dont know why. but it helps to know this forum exists to talk to when it all feels too much to juggle.
My theory is that the bioavailability of pred has a LOT to do with it. It can range from 50% to 90% depending on the person. Most doctors seem to think that everyone is the average 70%, If you are a 50% person, at 11 that is 5.5mg you are actually getting. And there may be other factors involved.
Hi Ann1A, So sorry to hear you’re going through a tough time at present. I can’t really advise you but wanted you to know that your not alone with the dreadful fatigue when on higher levels of Prednisolone. I was diagnosed with PMR in August 2020 so we’re at a similar time frame with this awful disease. I’ve had three flares during the last 17 months and I’m currently doing a DSNS taper of 9.5 mg and 9mg. I resisted taking Methotrexate last September as I suffer with IBS and couldn’t face the possibility of having gut problems. Like you I’ve been feeling exhausted during the day for the past month but actually feel more energised at night when it’s time to go to bed. My ESR and CRP are in the normal range. I’m considering contacting my Gp to see if there any other issues that could be causing it. I had a blood test yesterday to check my vitamin D and B12 levels. I’m also very nervous about contracting Covid. I’ve had 4 vaccines and I’m very careful but worry about how my body would cope with Covid on top of how I’m already feeling. I hope you feel better soon, Tiggy70.🤗
Oh thankyou for that supportive comment... yes I come awake in the evening too, just as if a switch is thrown, more mental energy than physical. Weird. I don't know if I have had flares or not, the wall hitting fatigue at 11mg could I suppose be a flare, but it's very different in its symptoms from the original . Its reassuring to know when others are at a similar stage, in that you feel if others are there too, it's more acceptably 'normal'.
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