A year ago, when I was at 10mg pred. PMRPro helpfully said :. “And the next stage of reduction is likely to add in the fatigue of waiting for adrenal function to get back to normal - out of the frying pan and all that …”
I am the main carer for my lovely wife whose dementia and immobility are slowly progressing: as you will guess, my anxiety levels tend to increase from time to time and this must have an effect on my PMR. But I do not know whether this is to blame for increased fatigue, lethargy and dizziness (which have been with me throughout) or whether that is caused by pred. tapering with possible consequent adrenals waking up....or not. A week ago I increased my pred. by 1mg to 5.5mg for a week and am adding just half of this at the present time; I think I feel slightly better. Now I don't know what to do.
My question is: what do I suggest to my GP? I wonder whether I should ask to stay at 5mg or 5.5mg for a month and then slow taper from there but I don't want to stop my adrenals getting working if that is what is happening. Maybe I just have to put up with it?
Perhaps I should ask my GP if he can refer me to a different rheumatologist, the former one having given up on me because I didn't follow his unhelpful advice.
Note: I tend to write a letter to my GP in order to give him time to research.
Thank you.
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ChinaWuntoo
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Perhaps a referral to an Endocrinologist would be of help at present. Beware however, I did find myself receiving conflicting advice when I had a ( very good) Rheumatologist and a ( very good) Endocrinologist advising me. I felt exhausted and unwell at 3 mgs, not really in pain. It did turn out that I had quietly developed GCA and Large Vessel Vasculitis to add to my PMR diagnosis. So I did need both specialisms. My Endocrinologist was keen to move me on to Hydrocortisone, 5 mgs, 4 times daily to mirror and stimulate my Adrenal glands. This would not have controlled GCA. I ended up on 40 mgs of Pred and now Tocilizumab as well.You are doing a loving and hard, stressful, thing. Fatigue would be a normal response. I cared for my mum for 7 years with frontal lobe dementia, so I do understand. It is crucial to care for yourself.
In answer to your question. If you haven’t developed another condition, I do think that this challenging phase has to be gone through, with very slow tapering and plenty of rest ( Ha). Raising your dose will slow the transition. Some people never get off Pred completely because the Adrenal function does not return sufficiently. You need careful and expert medical advice. A new Rheumatologist could be key. Where are you in the country? Someone maybe able to recommend a good one for our conditions.
I would be inclined to stay at 5.5mg if you’re sure that’s enough for 3-4 weeks and see if that helps. And TBH I wouldn’t be in a great rush to reduce, your life is very stressful.
If your GP is more sympathetic to your home circumstances, and he is capable of dealing with your PMR, I would stick with him rather than be looking for another Rheumy, unless you have other health issues which complicate matters.
Your fatigue and dizziness which you say you’ve had all along may be slightly increased by adrenals still being sluggish. Many have similar….took mine about 8 -9 months to get their act together.
As SheffieldJane says for most people the adrenals will restart - with slow tapering and patience.
I'll reply a little later - watching a fantastic zoom church service at present. Meanwhile, thanks for the posts - they are very helpful (if a bit confusing!).
An aside: as our son preached this morning (from sitting on a wall outside the church because zoom played-up) - adaptation is necessary in life (BTW our son has an atheist father!).
Thank you Sheffield Jane and Dorset Lady. I've no real pain which is why I suspect I am not experiencing a flare. I'm watching for GCA. Our daughter and I are trying to find a way for all of us to go away but my wife. obviously has difficulty in coping with the idea, routine being important.
Yes, I ssupect that 'this phase has to be gone through'.
My GP is good listener and sympathetic but I don't know how knowledgeable he is (he was trained a long time ago in a country in the southern hemisphere). This is why I write stuff down in a letter, so that he can consult and research before we speak. I'm not being critical.
I live in East London (UK) and, from this site, have heard of a good rheumy in Romford and another at King's. If anyone can confirm this or suggest another, please do.
I will be getting a letter to my GP tomorrow hopefully.
At 5mg I seemed to be at the peak of deathly fatigue from the adrenals. I did go up to 6mg for a while which improved things. I then went back to 5mg and spent several months at that level to get over the deathly fatigue which slowly improved.
Dr Rod Hughes (Chertsey) likes to keep patients at 5mg for up to 9 months as he finds that it helps the next stages of reduction. You really haven't been on pred that long in the great scheme of things and to be down to 5mg at your age after this time is very good, most good doctors stop worrying at 7mg. I'm in a similar situation to you - I find the stress involved means I cannot get lower and I am at a far higher dose than you are. I have to function and if that means more pred, so be it.
I think that your answers to ChinaWuntoo are fairly relevant to me also, see my post and your answer on another page! I am exhausted at the moment. Two weeks ago I had to drive down from Northumberland in one go having only just got there from Suffolk as my poor husband who has been in a nursing home for nearly 9 years (Alzheimers, Parkinson’s, Epilepsy and Motor Neurone) suddenly developed low vital signs. He recovered but I haven’t! I am puzzled by my GP’s remarks on the NHS app where I can see all my blood test results and wanted advice before I talk to her tomorrow about my low cortisol level of 62, ‘abnormal but to be expected’. At what level should I be worried about adrenal failure, please?
It all depends what dose of pred you are on at the moment - if you are on about 6mg or above then the cortisol level will be very low - the body knows there is enough corticosteroid in the form of oral pred for you to function so doesn't produce more cortisol. That's why the doctor has written "abnormal but expected).
You don't really have to worry about adrenal failure at all if you are on pred - possibly adrenal insufficiency but not really until you get to a low dose and the fatigue is overwhelming. If you were exposed to any severe stress - accident, illness, emotional or physical - then your medical team needs to know you are a long term steroid patient so they can watch out for problems and that is why you should carry a steroid card and preferably have some of the details available.
Thank you. I have posted that I am at 5 mg, having been at 4 two months ago but had to go backwards because the pains returned. Just about coping at 5.
You will appreciate that stress levels are likely to remain high for me, as they do for everyone in my position.
Dr Rod Hughes is just about within travelling distance. I do not relish a phone chat. I may mention him to my GP as I know Dr H is recommended by many on here.
Seems my mind is moving towards asking my GP to stay on at least 5mg for a period.
Thank you each. You have encouraged me to request a stop to tapering for a period - at either 5.5mg or 5mg - and to request a referral to either a new Rheumatologist or a "consultant who specialises in adrenal gland activity".
"a "consultant who specialises in adrenal gland activity"."
An endocrinologist - but they only look at the adrenal function, they rarely know much about PMR so switch patients to hydrocortisone to improve the adrenal side of things - at the expense of control of the PMR.
Thank you. That was a direct quote from my letter to the GP: I am playing it carefully with him - didn't want to seem that I knew it was an endocrinologist and I try to keep as much power in his hands as I can (whilst being in control myself 😉)! But your comment is helpful,
thanks, and I will have it in my notes when I speak to the GP. I really
want to alert the GP, if it is necessary, to the fact that my adrenals
need to be part of the PMR/ Pred equation. (Bit like "I've got a
headache, do you think I need to see an eye specialist?")
I can only tell you what works for me. Because of lack of adrenal function, I take 5 mg of prednisone daily for the rest of my life. When the body is so used to being on various doses of prednisone the adrenals get sluggish and quit. Taking the 5 mg daily keeps my energy level up and takes the place of adrenal function. Of course I am 80 so being on this dose the rest of my life doesn’t bother me. Good luck, you’ve got a lot on your plate. Do take care of yourself. Hugs
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