Having caught a cold recently, resulting in nasty cough, I’m under the weather (still ongoing, but slightly better).
On Tuesday evening I began shaking uncontrollably and then remembered the sick day rules. Taking an extra 5mg restored balance and I’m glad I did. The next day I reverted to 1.5mg.
I’ve been on Pred for 39 months and this experience shows me my Adrenal function is not normal. I’ve read messages from the pros that adrenal function can be suppressed for around 12 months even after stopping Pred. So I imagine I should keep a supply of 1’s and 5’s even after (hopefully) tapering to zero.
The question based on being on 0mg and having an illness, would I titrate upwards first with 1mg then another, or go for 5mg. And given what happened this week should I request a basal cortisol test. Depending on the result I may be offered a hydrocortisone injection kit for emergency use.
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Might be sensible to request a test -and then take it from there and yes it can take up to 12 months after stopping Pred for adrenals to be fully functioning .
But even with your recent episode I would say yours are working better than you may fear otherwise you would have had a lot more issues in your reduction down from around 7-8mgs.
Many do keep a supply of Pred to hand after getting to zero -but it’s usually in case the PMR resurfaces.
I definitely think the basal cortisol test is a good idea - should give you a good idea of how well the adrenals are doing in terms of being able to produce cortisol though not whether they are reliable in an emergency.
No - Sick Day Rules would be better fulfilled at zero pred by taking 5mg which is a common replacement dose of pred in adrenal insufficiency. I don't know what endocrinologists would say. SheffieldJane might know as they sent her a kit though initially without instructions!
This is a bit of a ramble but hopefully it’ll give you a picture. I can attest to having episodes of what seem like adrenal insufficiency just after or during particularly challenging events. The reason I assumed it was that was because the symptoms were the same as when I knew from testing that my cortisol levels weren’t too clever. Also, 2mg Pred usually did the trick but I did have to recover for a day and be very still or more was needed. On low doses of Pred something like falling over would reduce me to a jelly for hours, or hours of vibration on transport. Being ill, even long Covid, didn’t do it except when I ended up being hospitalised with Covid last July.
Since being off Pred since Aug 2020, I have had some do’s out of the blue from thinking I was ok. Examples would be going on a hike with tender Achilles tendons that reduced me to limping in great pain for 2 hours. It came on very suddenly and at first I thought it was low blood sugar but it wasn’t. Then came the familiar abdominal cramps, shaking and feeling a sense of deep doom etc. Determined not to call out the mountain rescue for a small hill I wrapped up and popped 2mg and when I felt a little better a bit later I was helped down. I needed a bit more Pred and went to bed until the next day. Another time was helping my daughter leave home which was very emotional, involved a van journey, back and forth with bags and a long day. 3pm, bang, same again. One last example is a 9 hour flight (my body hates 3+ hours), standing in long queues in 28C and then an hour’s bumpy van ride with accompanying extreme motion sickness. The euphoria of arriving in paradise was suddenly replaced with you guessed it.
As for testing and Endocrinologists, I had a Synacthen test at 4mg (not very special) and at 1.5mg (much better) and was signed off by the Endo’s a year later. They were aware of my occasional crises but weren’t moved to give me a rescue kit because in between times my cortisol was ok and I had managed it with pills, even though they acknowledged that it sounded about right. Had I been diagnosed reliably with adrenal suppression they would have given me one.
The Covid (4th time) was interesting in that it was the worst adrenal feeling I’d ever had and really thought I was going to die. The paramedics have me a slug of hydrocortisone which turned that around to just feeling terrible from Covid but not about to meet my maker. I think what tipped it over there was a week of temps of 39-40C and acute throat pain in spite of Paracetamol and then diarrhoea. However, a cortisol test the next morning showed an ok cortisol level so who knows what happened there. Perhaps I just needed the potassium in the drip but the Hydrocortisone was a wonder drug. The Endocrinologist was intrigued but unmoved and 24 hours or no sleep and nothing to eat meant my brain didn’t ask the right things.
As for your dosing, I would reduce slowly slowly 0.5mg over weeks. The reason I say this was that some jumps were better than others and as to whether my body was going to cope was not always obvious and depended on other things going on in my life and body. I don’t think you can tell what will happen when you are at zero. I didn’t do the classic sick day rules but perhaps I should have but for most crises I was off Pred but carried it with me and still do. A test is still worth doing.
I had a wobble back in June 2020. What induced it I can only guess but I had been playing kick about football in the afternoon. By 10pm I was in A&E, at the time I was on 12.5mg, and they increased it to 25mg. The next day I was feeling fine.
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