I posted about weird symptoms - faint mostly and had lots of responses that because I’m on 5 & 1/2mg at the moment that it could be adrenals.
Also of course could be sugar related. I am going to be monitoring that.
If it is adrenals - what can be done?
How does one effectively stimulate adrenal function.
What have you done?
Thanks. Xxx
By continuing on a low enough dose of pred for the body to realise it needs to make a bit more. It is only that that will do the job. There no supplements for so-called adrenal fatigue that will do anything except empty your pocket and some are downright dangerous. It's a bit like the central heating thermostat - it won't turn on until the temperature is below where it is set.
What to do? Wait, on a low enough dose that the adrenal axis will react. It’ll only work if it has to. I found that I could have good days and some were spent feeling totally faded. I coped by doing very little and trying to avoid anything upsetting. It comes in its own time.
If one were to stimulate it somehow, say by getting one part of the chain to fire up, You have no idea how much it was doing so which could be counterproductive. Also, which bit would you stimulate? Would that put other processes to sleep because they have been bypassed? No easy way on this one.
Thanks SnazzyD.
Can’t really have days where I feel awful and I am still working. Xxx
I know, that’s the problem. I had to resign from work permanently after they had hung on for 18 months just in case I made it to the sunny uplands of under 10mg. The docs didn’t tell me about this bit and I think they really should when people are meant to be working. It was tempting to pop a mg to feel better but I knew I had to get out the other side.
It is like any life changing event; one screams, “I don’t have time for this!”. Personally I realised that had been my mantra for decades as I ploughed on in my career and busy domestic life ignoring or suppressing signals that my body was being thrashed.
Yeah that’s me - because of having been a single mother and now a new immigrant that basically arrived with just suitcases - so playing catch up.
Just reduce the Pred.nice and slowly and get plenty of rest. Avoid stress, wherever possible and eat a healthy diet.
Thank - makes sense. 😃
Thank you for that very informative response. I don’t seem to be getting any PMR pain when I reduce. It’s more like knee pain / old injury pain.
I wonder if I should consider and discuss hydrocortisone with my doctor.
Old injury pain could just be due to the increase in inflammatory substances.
Yes. I’m going to try and be better about my diet too.
Very true. Though not sure what mechanism does Actemra help adrenal function return? Or was it that your autoimmune activity was held consistently by the Actemra such that the Pred dose was also consistently lower to give the adrenals the wake up call they needed?
the minute i was diagnosed and started prednisone, i was referred to a rheumatologist AND endocrinologist, over 2 years ago. I only see the latter every 6 months and I'm on the 7 mg. one day, 6 the next right now. He monitors cortisol which is about 2. They told me when it gets dicey, and the adrenals don't kick in, they will address it. Not sure how, but I feel confident having this aspect monitored. My dr. said I can use any taper I want to as long as I try to taper down to 6 by January, so I read all of the tapers I could find and settled on this one. TRying to cut those pills in half was wearing on me. why they don't make 1/2 pills, I don't understand, but........i'll keep you posted. good luck. [n the US and I know they do things a bit different here so I'll try to meld the excellent info on this site with my drs. here.]
Thank you for your response. Yes would love to hear how you get on.
I'm sure you will get good information from people like PMR Pro. I found that as I have reduced to 2.5 over 2 year period my adrenals have had to start doing more, which happens reluctantly. I still have "rusty robot " legs in the morning and afternoon fatigue, however, I put up with the symptoms for sake of eyes and bones, hoping that they will gradually decrease.
Interesting reply and very informative? When I get a pain, I do not automatically attribute it to PMR. In 2 years I have not seen a rheumatologist. I manage it with my GP, wo has left it up to me in tapering as he says all our bodies are different and we, inside that body, know it best.
So yes, your autoimmune bit is supported so that the Pred can be taken lower than you may have been able to tolerate so the adrenals are even more challenged. No effect on the ability of a person to cope adrenally but takes away the guesswork of is it or isn’t it a flare coming.
Hi this is what I do for my husband and so far so good. They say for adrenals you must eat before 10AM. A protein breakfast then again at 11:30. This can be whole-wheat crackers with peanut butter. Then he eats between 2-3. These times are important because Cortisol levels drop between 3-4 so when you eat between 2-3 it will keep your levels at bay for the most part. Dinner is always before 6 and he always has a whole-wheat cracker with peanut butter before bed around 10-11. This really seems to help him from crashing. The night cracker is so important. He also does a drink shot of turmeric every morning. He is on 7 1/2 mg and going to 7 tomorrow for the slow taper. Good luck. This too shall pass 🙏
Thank you for that advice - great. I have been doing intermittent fasting to help heal my gut and so was not eating before 12ish. I will look at changing this. Thanks and good luck to your husband. Iant this a fabulous group - everyone is so kind. I raelly value all the 'oldtimers' (in terms of length of PMR experience) too.
Bone broth is great for the gut. Kettle and Fire is the best if you can not make your own in the US.
I was having that frequently - homemade - along with other gut healing foods - and was not getting any better! Only to discover that they are ALL high histamine - and I was inadvertently causing an ‘allergic’ type reaction and more inflammation! Go figure.
Same here, discovered by trying the AIP diet. Pickles also set me off, and beetroot.
Hahaha - yes and about and banana
Yes, I have osteoporosis, so when I feel pain that I think may be from that complaint, I take some Tylenol, If I get any relief, I think "no PMR."
I was dx with GCA 20 months ago. Taper from 50mg to 10 pretty uneventful, except a couple blips at about 25mg. After 10mg rheumy advised drop of 1mg per month. As usual, from experience, I tapered same rate but less drop.... 1/2 mg every 2 wks. Went well till trying 1/2mg. Every time I tried felt just awful, low blood pressure, low blood sugar, dizzy etc. No return of GCA symptoms, but pretty classic adrenal insufficiency. Rheumy had previously advised against every other day dosing. But having spent more than 5 months at less than 5mg I was fed up. So thought I would try alternating 1mg and zero. First day at zero, felt better than I have for more than 2 years. So thought I would try zero for another day....and another. I have now been off prednisone for 2 wks, and feeling a bit fatigued, but other than that pretty happy. Not sure this is normal, but somehow around the 7mg mark, I just KNEW I was over the GCA and now had to deal with the adrenal issue. So far so good. Will let you know.
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