Having spoken to my GP again this morning it would appear I did not misunderstand his theory but fortunately he has an open mind about long term low dose steroids.
It remains his opinion that the adrenals would have woken up by now and that any dose lower than 5 should have little benefit. ( I have been on 3/4mgs for several months)
However , he also reiterated that no one really understands why some require long term low dose and others come off steroids quickly. He was more concerned about symptom management and advised I stay on 4mgs for now and try to reduce again in 3 months which of course mirrors my plan.
Bottom line is we agree on the plan so thats fine by me .
Case closed..................for now
Written by
larkthebark
To view profiles and participate in discussions please or .
"he also reiterated that no one really understands why some require long term low dose and others come off steroids quickly"
Er - we might not know exactly why it happens but it is becoming abundantly clear to the research people in the field that PMR is not a simple homogenous disorder - there are at least 4 or 5 different manifestations, just as there are 3 manifestations of MS.
As for "the adrenals will have woken up at 5mg pred" - that flies in the face of the whole of the rest of physiology and endocrinology opinion ...
Yes, but , I could sense some unease on his part when I argued that it is highly likely my adrenals are still suppressed after over 2 years on steroids so I let go of the bone.I dont want to fall out with him and as long as he is using a patients symptoms as his guide to therapy rather than his theory I felt partially satisfied.
If nothing else it may give him food for thought and perhaps even stimulate him to review adrenal physiology in the context of steroid therapy and the many types of PMR.
Thanks for your input, I didnt go as far as explaining the difference between endogenous cortisol and steroids as I think he may have got even more frustrated with me.
That's why we have specialist endocrinologists to treat adrenal problems rather than GPs. And no one really understands PMR and steroids very well yet, even the expert rheumatolgists are still trying to work it all out, working with a few enlightened GPs and feedback from those of us who actually have it like PMRPro and focus groups etc. Knowledge is still evolving, some of the myths are being shattered but there has been 60+ years of wrong or no information fed to doctors as part of their training and it's going to take a lot more time yet to get improvements in our care. Glad you have a plan, let us know how you get on x
Thankyou for your comments which I wholly agree with.
When I was first diagnosed (having insisted a blood work up would be more beneficial than physio ) I was told I would be off steroids in 12 months.
My physio , who had said doing bloods was a waste of time , felt embarrassed but embraced the need in future to 'think outside the box ' when dealing with a patient whose symptoms were not responding to his treatment.
We have all been on a steep learning curve and fortunately I have , with the help of this site, felt better informed and equipped to cope with PMR and inaccurate prognoses and theories.
As I am doing well on 4mgs would you agree that currently I do not need to see a rheumatologist ?
I have never asked for a referral as I felt I was progressing well albeit slowly.
My query would be , if my adrenals are still half asleep would supplementing the adrenal function be of any use and would a cortisol test be useful at all.
I feel ok but do get very tired. However I have a very active lifestyle ( finally ) and am 69 so perhaps thats to be expected.
My GP wants to do bloods again in 5 weeks so then would be the time for me to consider asking f or an expert opinion.
You can't "supplement" adrenal function - you can have replacement therapy by using pred or hydrocortisone. The only way to persuade the adrenal glands to produce cortisol as they should is to persist with a pred dose that is a bit too low but not so low that you are at risk of developing severe adrenal insufficiency. Increase the dose of pred - and that trigger is removed.
Depends on the person really, As the pred dose falls below about7mg the adrenal glands need to start to produce cortisol to top it up to what the body requires to function. Usually you would say the advent of increasing fatigue at this sort of range was suggesting you were approaching adrenal insufficiency and that should start to poke adrenal function into wakefulness.
I think most people here who have done it would suggest that the way to go is keep reducing in very small steps as far as you can providing there is no return of PMR symptoms. It depends on how well you must function - and how willing you are to restrict your activities to accommodate it. SnazzyD writes well on that.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is it worth taking Methotroxate when on a low dose of prednisilone?
prednisolone reduction
Low enough pred to get low cortisol symptoms? 
First Appointment with Rheumatologist...
Seen Rod Hughes...more confused than ever!!
