I am on 3.5 mgs of Pred after. 8yrs of my long journey with PMR and steroids.
On the whole I’m doing well. Still stiffness in legs, hips and back but think this is more due to arthritis/ age than a resurgence of PMR.
I had a blood test recently that showed evidence of cortisol although only a low level but does show my adrenal glands are ‘waking up’.
Has anyone else experienced feelings of ‘ panic’ at this level? It’s hard to describe but I feel shaky and a little dizzy and just generally unwell. It only lasts a minute or so. I tend to check my blood pressure and it’s always ok, though my pulse rate is sometimes at 60 or below( that could be due to long temp Atenolol for blood pressure.) This happens maybe a couple of times a month.
My theory- I’m probably totally wrong- that what I’m experiencing is a rush of adrenaline as my adrenal glands are trying to do their job properly. It all then settles down.
I haven’t spoken to my GP yet. Is it something I should do?
Any advice would be great.
Wendy
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wendyanne49
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Hello, low adrenal function certainly gave me waves of panic and shakes etc. Especially when I had had some sort of challenge like a busy day, a fright like nearly tripping, being under the weather, a journey, shopping. It might help to think what you were doing and what you were feeling prior to the wobblies. Your test - was it a cortisol blood test done early morning before your Pred dose? The time of day affects the likely result because it is meant to be highest in the morning. My adrenal function was tested with a Synacthen test at 4mg and 1.5mg. The first wasn’t very special but gradually by 1.5mg Pred it was much better. They also seem to start working in fits and starts so you can have good days, then do something different and bang, you don’t feel so good.
The hormone we are concerned with is Cortisol not Adrenaline which comes from a different part of the adrenal gland and keeps on working. Perhaps what we feel is an adrenaline rush as a fight or flight when our body is in distress because there isn’t enough cortisol to deal with whatever.
Thanks. It was a general blood test done early in the morning before I took my Pred. They specifically checked the cortisol levels as well as other levels.I understood that our adrenal glands govern the production of adrenaline as well as cortisol. If the adrenal glands aren’t functioning properly due to long term steroid use, is it JUST the cortisol that is affected?
I think you are maybe on the right track - the adrenal function is swinging about a bit and you can feel it. It can take months to get its act together properly. But it is looking promising.
Thanks. After reading the article about the adrenal glands it makes a lot of sense. We ask our body to repair itself and it can be so complicated. No wonder it takes time 😊
I think your assessment of what is going on is spot on. This seems to be a stage that we have to endure. I wonder if relaxation techniques, meditation, mindfulness, gentle exercise, crafting etc might help you to get there. My fears were linked to fear of GCA, I found that regular eye health checks helped to reassure me that my sight was not at risk. Mostly however, the symptoms are chemical and sometimes just understanding this can be calming. Keep going you are nearly there.
When I was tapering down at 6 to 5 to 4, I experienced extreme dizziness especially getting up from/lying down on bed and getting up from sitting. The room would spin. You just have to pause and let the dizziness pass. I stayed the course on tapering and I did not want to up my prednisone. I am now at 1.5 mg and doing fine. I refuse to take methotrexate as suggested by my rheumy. I did not want to substitute prednisone with another drug that has many side effects.
Yes, I recognise the feeling. Happened to me at around 7 mg, actually! I'm not aware of when it faded but I think it only took a couple of weeks when I realized I didn't have that unexplained panicky feeling any more. Of course it helps to know what is probably the cause.
I've never had that. I've taken steroids for over 15 years and the only time I've felt as you described was when taking a dose over 10mgs BUT keep in mind..everyone is different. Some people feel "psychotic" just taking a dose of 10mgs or even 8 mgs...everyone reacts differently based on weight, bone structure, when you take steroids (with meals, in the morning in the evening) so many factures. I wish you good luck! Sounds very positive for you!
I’m at 3mg/d Pred and wk 2 of taper to 2.75mg/d. Last Thursday afternoon I had a few minutes of mild nausea, my stomach felt a little unsettled and a little woozy. I laid down for about 15 minutes and was all better. I’m just guessing it as related to cortisol levels as I had been rushing around. First time for those symptoms, and it hasn’t repeated, yet. Haven’t had any adrenal function tests either.
On another subject I’m wondering if I qualify for the Moderna booster shot due to having PMR and being at 4.5mg/d when I got my two shots previously. All of my antibody tests(4) are still showing positive for antibodies against the Moderna coded proteins. But I have no clue about the sensitivity of the test.
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