adrenal insufficiency/prednsiolone

[ccccc]

Hi everyone

I've posted about this before, but I have adrenal insufficiency due to Prednisolone use, been on 5mg a day for over 2 years now, purely for cortisol replacement rather than asthma.

I have a appointment coming up with the endocrinologist in a few weeks. I saw one privately about 6 months ago who tried to wean me off the Pred using hydrocortisone tablets but I had a bad reaction to them (heart palpitations and my asthma got worse mainly) and he basically washed his hands of me.

So I wanted to ask if anyone with AI has weaned off Pred by using a slow withdrawal rather than HC tablets, I have managed to reduce to 4mg myself after a few false starts but don't want to go any further without endo support (I know all about sick day rules etc). I feel like garbage on daily Pred and can't wait to fully come off it as it's caused osteopenia too.

I am a bit concerned as I saw what I think is the same endo in July who I'll be seeing in a few weeks (was discharged in error...) and he wouldn't have it that the HC tablets would cause these side-effects, he seemed to think it was my asthma coming through due to the Pred wean (it wasn't as I was still having these side-effects when I went back up to 5mg and took the HC tablets). Respiratory have written to him saying it's safe to wean from an asthma perspective. So I'm going to suggest a slow Pred wean if he can't suggest anything else.

[MikeWhite]

If you have permanent adrenal insufficiency then you require cortisol replacement medication

If you do not then you are likely to become seriously ill which maybe fatal at some point in the future - please heed my warning as I have first hand experience of an adrenal crisis we’re my blood pressure dropped to 30 systolic

You even need extra steroid medication for simple things like having your teeth cleaned to major surgery

Adrenal suppression is controllable but you have to be careful and follow sick day rules etc to the letter

Please be careful and listen to your endocrinologist

Mike

[Bifocle]

I also developed adrenal insufficiency from long term reliance on both tablet and inhaled steroids for my eosinophilic asthma. I was able to very slowly wean myself off my replacement dose of 20 mg hydrocortisone. The trick is to go very slowly, especially at the end of your taper. I joined a Facebook site caljed “adrenal insufficiency tapering and recovery” which was incredibly helpful. It took me ten months to taper completely, the last 5mg of HC took months. Slow and steady wins the race, baby steps. FYI - this was during Covid with zero help from my endocrinologist. For some reason they tend to pressure folks to go too fast, which not only can be dangerous but also leads to failure.

[ccccc in reply to Bifocle]

Hi Bifocle

Did you have any side-effects from tapering off, I'm concerned about knowing the difference between feeling poorly due to the side-effects of the steroid and feeling poorly due to my adrenal glands not working properly during the taper. I suppose I'm worried that if I am given the go-ahead by the endo to taper off by 1mg how will I know if I'm making myself poorly or going to fast with the taper?

[Bifocle in reply to ccccc]

Prednisone is MUCH stronger than hydrocortisone- I think 4 times stronger? So 1 mg pred is the equivalent of 4 mg HC. If you are currently taking 5mg of pred that is equal to 20 mg HC . That dose (5mg pred or 20 mg HC) is considered the equivalent of your natural adrenal function. Maybe talk to your endo about an alternative to hydrocortisone, if you didn’t tolerate it well?

The Facebook site I referred you to recommends a very very SLOW taper. I started with 20 mg HC and reduced my dose by 2.5 HC every two weeks (cut 5mg HC in half) until I got to a total dose of 7.5 mg HC. Then I slowed down even more, reduced by 1.25 mg every two weeks. If I felt dizzy or nauseous it was a sign that my body was being stressed, and I would just slow down the taper. It’s difficult because you WANT to stress your adrenals, to make them wake up, but you don’t want to stress them too much - it can be very dangerous. You can easily end up in the ER, I did!

I personally always felt very peppy on prednisone - I did not seem to need to sleep, was always quite hungry, but it never made me feel ill. Withdrawal from your reliance on prednisone WILL make you feel sick - the typical reaction is headache, nausea, dizzyness. You are deliberately stressing your body, in order to wake up your adrenal system. Drink lots of fluids with electrolytes (Gatorade or liquid IV), avoid caffeine, alcohol, sugar. Have your AM cortisol tested frequently. Have you had your ACTH levels tested? That will indicate if your adrenals are ready and willing to reactivate. The Facebook site I referred you to will be a great support group in your journey.

[ccccc]

Thanks Bifocle I will check out the Facebook group you suggested.

I've found even going from 5mg to 4mg Pred for more than a few days make me feel dizzy, so I may even try 4.5mg (I have 1mg tablets so can cut in half) but wouldn't try this again until I've seen the endocrinologist. You're right, I'm stuck between wanting to invoke an adrenal response but not leaving it so I become ill. I had a short synacthen test and my cortisol did increase but not enough to justify tapering off the Pred (but this was done by respiratory last year).

I just read about DHEA supplements as I'm wondering if this will help with the tiredness. I really wish I could tolerate HC as the one time I tried it I felt much more alive and energetic whereas on Pred I just feel sluggish and foggy-brained all the time. But the palpitations I had were very bad. Thanks for your advice and I hope you keep well.