Dear Forum,
I am at 4 mg, pretty steady but I think that my adrenals are not producing enough cortisol to counter sufficiently my low level of exercise. I feel very grateful that my last flare was very mild and was managed very successfully with the advice in this forum.
I would really appreciate advice about helping my adrenals fully recover in addition to continuing with a very slow taper.
Will remain most grateful for any tips and wisdom you can share.
No magic bullet to help really… just time, patience, very small decreases in Pred dose-wise and slow tapering to nudge them into working.
This link gives some advice - it was written quite a long time ago and refers to another illness, but is applicable to any on long term steroids -
healthunlocked.com/pmrgcauk...
This also explains a bit about what happens to adrenals when in long term steroids -
healthunlocked.com/pmrgcauk...
Thank you so much DorsetLady!Yes, I will look at the links!!--- Yes patience--- an important learning!!
Nothing earth shattering: be patient with the very slow taper and stick it out. There is nothing except low levels of pred that will encourage the adrenals to wake up and stage a return to work.
It may be worth asking your doctor to do a basal cortisol - a cortisol level on a blood sample taken between 9am and 1pm. Under 100 nmol/L is adrenal insufficiency and over 450 it normal. Where it lies between is an indication of whether they are starting to recover and how much. But there is nothing they can do to encourage it bar waiting and watching.
Thank you so much PMR pro--- so informative and helpful!!
I am under an Endocrinologist at this hopefully “end stage” of PMR/GCA/LVV. The symptoms I have are exhaustion and malaise, some moderate pain in underused limbs and,shoulders and neck. Insomnia mixed with an unnatural and welcome sense of excitement, for short periods. I have had cortisol morning tests and Synacthen tests in the past about a year and a half ago but the diseases weren’t quite done with me .With my Rheumatologist’s blessing. I have requested picking up the work I started on helping the Adrenal system to work . He ( the Endo) was keen to get me on to Hydrocortisone which works more like our natural system but isn’t great for PMR type pain. He also supplied me with an emergency hydrocortisone injection kit in case of an Adrenal crisis. I am hoping he can strengthen my system so that it can stutter in to life on its own. I feel ready to come off Pred gradually and begin to improve my strength with walks and talks ( another free scheme) and free gym classes for people with joint pain of varying degrees). There is also a swimming pool I can use and a discount on joining the gym after 24 weeks. I quite fancy Tai Chi .I may have to start treatment as my type 2 diabetes blood sugars have shot up to 50. My main mission is towards rehabilitation and strength building rather than combating an active disease. There is a lot of guess work that this is the right time but I think something has shifted. I think most of us will need a rehabilitation period after Pred has been stopped. I will still get my eyes examined every few months just in case. It occurred to me that it won’t be as imagined, A sudden cessation of symptoms and then be as I was before. It is going to take willpower and determination to get fit. I have been at my dose of 5 mgs for many months but I think my difficulty with mobility is down to being sedentary since the pandemic and the aftermath of Covid. So wish me luck.
Some people may not need concentrated work with an Endocrinologist in the aftermath of PMR/GCA. I do though, after 8 years and concerning Synacthen test results that look at the potential for producing my own Cortisol. Thyroid disease has put pressure on this system too, I believe and the radio iodine treatment to knock out the function.Sorry this is so long. I hope it helps a bit. I will report anything useful.
Thank you so much Sheffield Jane!! Wow!! Very informative and the details are quite helpful----it is a lot to consider as we listen to our body and try to support its healing--- yes please do report anything useful!! all the best!!
Thank you, very helpful
Thanks for this detailed account of your experiences Jane. I’m in adrenal territory, had a low cortisal test result last week and am awaiting a Synathcen test after my holiday at the end of April. They don’t call it the deathly fatigue for nothing. I’ve managed to keep up limited amounts of exercise, mostly walking, some swimming/aqua work. On the low energy days I make sure I rest up. It’s difficult planning life. Today we visit our son and family for Easter. It’ll be lovely but a long drive and difficult to know how I’ll cope on the exhaustion front. So pleased to hear something has shifted for you, I’ve had a few weak days. Last night legs felt like lead and I fell into bed! Today I do feel I’ve started with them feeling rested so fingers crossed.
You are ahead of me on the exercise front. Some days, tackling the stairs is the best I can do. I learned that I can do more than I’m doing in the balmy heat of Australia and inspired by my sparkly grandchildren. It’s physically painful with a “ can’t be bothered” psychological overlay. This really improved and I was full of fitness fantasies when I returned. It was just bad luck that a poor blighter was coughing on the plane from Sydney to Hong Kong. 3 days later I had a cold and chest infection that lasted several weeks then the post viral exhaustion. I am however determined to continue with the plan to pursue fitness. It is actually beginning to scare me, in a use it or lose it kind of way. I hope you have a really lovely Easter. Try to nap in the car.x
I just gave into them. I did go up 1mg as I was like a zombie.
I'm on 6mg this month having slowly tapered at the rate of 1mg per 4 months since 8mg last August when I saw a Rheumy for the first time. I saw him again last month and when I get to 5mg I will change to tapering 1mg per 6 months. I won't detail the plan here as I have done so before in these pages. I certainly identify with Jane's "can't be bothered" psychological overlay. Lack of energy is a huge demotivator. I'm hoping that the better weather will enable me to knuckle down and walk more often but the lethargy is very real and needs a lot of willpower to overcome.
Thank you for sharing your tapering schedule AyJayBass! The fact that you steadily are able to continue to steadily make progress is great news and yes--- willpower---👍🙏 I also want to retake more walking so important to do for us to continue to stay strong and healthy!!
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