In 3 months I have tapered using methods on here in 0.5mg drops from 8mg to 7mg. Have felt like a bouncing ball, going from fatigue to low mood to bouts of anxiety, but thankfully no return of pain. Now I seem to be wired quite a bit of the time and can wake at night completely alert and awake and sometimes not be able to go back to sleep. During the day I feel a bit like I did when I was initially on 15mg with lots of energy but know I need to rest in the afternoon to calm the brain as its not good to keep going. Was aiming to stay at 7mg for a few weeks but wondering if its possible that this is too much pred for my system. I read a lot on here about adrenals waking up, mine seem to be on full alert😆 but it may be all part of the pred journey.
Can you have too much cortisol?: In 3 months I have... - PMRGCAuk
Can you have too much cortisol?
I think it may be part of the pred journey. If you are on 7mg pred that should still be suppressing the production of too much cortisol but it does seem from other people's experiences that the return of adrenal function and cortisol production can start even at moderate doses of pred and it can swing around quite a lot, sometimes a lot, sometimes less.
You could ask your GP practice if they will do a basal cortisol - cortisol on a sample taken between 9am and 1pm. It will give a good assessment of what your adrenal function is like.
I tend to agree. The pred journey cannot be predicted or hurried. Thanks you for your reply.
I titrated to 1mg after 6 yrs. felt dreadful return of pain. However chronic insomnia, wired but tired. Gp refused basal cortisol test so paid private 24 hr saliva test. My cortisol levels are very high 24 hrs, despite 1 mg. Went back to 5 mg because pain. Cant sleep at all. Lab tests said need endo appt re results. Am waiting but have already been waiting a year. Lab results said likely cause Prednisilone high/ long dose or adrenal/pituitary tumours. Gp as usual dismissive but has written to expidite my appt. That was a month ago on top of my 12 months wait. The insomnia is horrible. I really thought I had got AI but instead my results cam back as very high cortisol no circadian drop. Still in pain but not as bad. The waiting time to see anyone is awful and when you get there they seem to know nothing about pmr. My useless GP is now long term sick but residing in her apartment in Tenerife so I am told. My private test cost £155 when my Gp refused a basal cortisol test as advised on here. The on,y thing is that my levels in the morning and 2 hrs later were at top of the range in normal but then spike in afternoon and remained high until midnight when the last test was done. This would not have shown in basal cortisol test. Sorry to be so negative and possibly angry but I am truly fed upwith our nhs.
Sounds like you have had more than your fair share of problems over your 6 year PMR journey which sounds horrendous from your post 2 months ago. Insomnia makes dealing with it all incredibly harder. I'm hoping my current phase is a blip. Advice from long term sufferers on this forum is always worth listening to and not everyone has the same journey, GP, support etc and of course we are all different. Good luck.
Time was you couldn't go off abroad on jollies when sick without approval. The NHS is almost broken - and so are the staff still there. And if it does break - it will be all the worse. But your GP needs a smack .
Longterm pred should suppress cortisol and there shouldn't be that amount of cortisol showing due to interference in the test - at least, not for the blood tests, not sure about salivary cortisol. There is evidence for low cortisol in treated PMR patients so your result is way out of line.
When I had this my logic said that cortisol is produced to try to regulate the effect stress and the body’s responses. Yes it does things like body shape and metabolism changes but on the whole it helps you cope and not die from a stressful day. When Pred creates an abnormally high level of steroid at much higher doses it stimulates adrenaline production. Adrenaline causes some of the racing and disconcerting stress symptoms we feel in the moment. Rather than the Pred causing the increase at 7mg I think my body was feeling threatened by the lack of cortisol (the body really doesn’t like that situation) which caused a release of adrenaline that made me feel the symptoms you are. 7mg was not enough Pred to cover my daily survival needs but still too much for the adrenal glands to fire up convincingly. Only by getting lower and the body to notice it needed to produce cortisol did this distress lessen. However, a slow reduction is needed so that one doesn’t tip into a crisis from a critical lack of cortisol. This meant from 7mg my drops were 0.5mg spread over 4-14 weeks. The lower I got the slower I got. I found this a difficult balance and until I got to 5mg I felt awful. Below that was better but I could crash at a moments notice and had a low tolerance of stress and physical activity. Anyway, that’s my take on it.
That all makes perfect sense to me. I have found the 8mg to 7mg stage difficult twice already and reverted to the higher dose. But this time, I keep telling myself I am not in pain and my body will adjust given time and you have given me reassurance on that score. As you said, this is a tricky phase and like you I am finding my tolerance of stress much lower, even for enjoyable things like last week when I had family staying followed 2 days later by a birthday party. My experience is that anxiety and excitement are 2 sides of the same coin and can affect the balance in the body, more so when on pred. What you have said is very helpful, many thanks.
It took me many months for my adrenal axis to work much better. You are right, good and bad things can have the same effect if you are low on Pred/Cortisol. At times one can feel pretty hollow and grey so it is a matter of faith that it’ll come good eventually. It can feel exasperating when one expects to feel like it would be a new dawn just because the dose was in single figures. Hopefully, yours will be friskier than mine!
Cortisol does not act alone. It is part of the hypothalamic-pituitary-adrenal axis (HPA axis). Chronic (long-term) stress (which is different from pressure) is the enemy. Persistently high cortisol levels are measured as a proxy for this, but cortisol does not cause the problem.
Very interesting and seemingly more complex 🤔. Where can I find more information? How does lowering the dose of pred fit into this picture?
'Chronic (long-term) stress (which is different from pressure) is the enemy' how do you define these terms or even differentiate.?
My symptoms of wired/tired, sleep difficulties and other disconcerting symptoms I thought were down to the stage that I am at in the pred tapering. When one is sleep deprived everything seems less manageable but I fear there is no option but to get through it and taper very slowly as others have suggested.
Studies show that people with high-pressure lives do not necessarily suffer from high stress. How they approach challenges - and whether they have the option to adjust their approach - seems to make the difference. See this link:
hsdept.co.uk/services/stres...
Poor sleep can have many causes. The link between corticosteroids and insomnia comes from the fact that they mimic the natural hormone cortisol. Cortisol regulates sleep as well as the immune system. Levels of cortisol fall in the evening to allow us to doze off, and this primes the immune system to perform a 'spring clean' at about 3 to 4 am. Cortisol then rises to wake us up and redirect the body's energies to being active. To fit in with this natural rhythm (and protect the stomach) it is recommended to have breakfast at your regular wake-up time, and to take your whole daily dose of steroid with it. That means 99% of it will be out of the blood before bedtime (but the errant immune system will remain somewhat suppressed over night, to reduce inflammation). See this link:
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