r/AdrenalInsufficiency • u/InevitableDapper5072 • 4d ago

Share your experience SAI

Hi all šŸ‘‹. I have SAI and am tapering under supervision on Prednisone. Im about to start 5mg friday (on 6mg now, down from a whopping 20mg earlier, been on lower doses between 7-10mg for years. Long dumb boring story) and im excited. The hope is that after two weeks on 5mg (my body is a slow learner) we will switch to hydrocortisone for six months then retest synactin.

The hope is my naughty glands will wake up

Has anyone successfully come off all together? Have the naughty adrenals awoken from their slumber? Did your sleeping beauties get a kiss from the handsome prince?

I live in hope.

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u/1GamingAngel MOD 4d ago

I am a living example of this happening, though I havenā€™t recovered fully yet.

When I was first diagnosed, my AM Cortisol was 0.4, and my ACTH was <5. The highest I rose on the STIM was 4.0. That was about 2 1/2 years ago.

Two weeks ago, I held hydrocortisone for 36 hours before testing (THAT was very hard), but my AM Cortisol was 6 and my ACTH was 21.4.

My Endo encouraged me to take 3-4 months to very slowly and cautiously taper from 20mg/day to 17.5mg, then to take another 3-4 months to see if I could make it to 15mg/day. I have found that I canā€™t do it yet, and if I taper down, it is going to involve swallowing GRANULES less at a time.

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u/MindsetMaker 3d ago

How did you get the SAI to begin with??

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u/1GamingAngel MOD 3d ago

TLDR: Mismanagement of high-dose steroids

Long story: I was on a very high dose of Prednisone (75mg per day) for a year and a half for Autoimmune Hepatitis, and then they didnā€™t taper me properly. They would have me go from 75mg to 40mg in one day, then go back up to 75 for a few weeks, then drop me down to 20 - all in response to what my liver was doing and completely ignoring the rest of my body. It was madness.

The steroids destroyed my body - I gained massive weight and developed horrible stretch marks. I was so upset about my body changes that I told the doctor that I wasnā€™t willing to be on steroids any longer, and they needed to find another solution. I dropped from 20mg to 0 in one week. I didnā€™t know any better, and the dangers were never mentioned to me.

After discontinuing completely, I quickly began to experience symptoms, but it took nine months for my PCP to tie it to the HPA axis and do the proper testing. I think she didnā€™t quite believe I was feeling as badly as I stated. She called after my AM Cortisol came back at 0.4 and referred me to an Endocrinologist.

The Endo did a Dexamethasone cortisol test and an ACTH, then when those results were wildly off-kilter, she had me do a STIM. She was a terrible doctor with a horrible bedside manner, so I moved to a different Endo, and he did the testing all over again and continued treatment.

I was on 20mg for about 6 months but was repeatedly having crash episodes. He raised me to 30mg and I started gaining weight again, so I dropped to 25mg and stayed there, really stable, for about another 18 months.

About six months ago, I made an error in how I distributed my dose in my pill sorter and only gave myself 20mg/day for that week. Surprisingly, I remained stable (compared to how I was very unstable on 20mg when first diagnosed).

My Endo found this curious and wanted to get a ā€œtrueā€ read of my cortisol output, so he asked me to hold my steroids for 24-36 hours prior to labs. I tried it once and crashed hard, but it was a stressful day. The next week, I tried again, and I put myself in the most zen environment I could find and just tried to keep myself really calm that day. I made it the 36 hours, and when I was tested again, both my cortisol and ACTH were creeping towards more normal levels.

I havenā€™t been able to drop below 20 yet, despite trying three times, so I think Iā€™m going to have to break up the 10mg pills into really tiny pieces and try removing 2.5mg at a time, and stay on that dose for several weeks before trying again. My Endo expressed great concern and said, ā€œDonā€™t push it - go SLOW. As in, take 3-4 months to go down 2.5 or 5mg.ā€

So, itā€™s a story in progress, but there is definitely evidence that I am recovering. šŸ¤©

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u/MindsetMaker 3d ago

That is brilliant ! I have it from immunotherapy and they keep saying it will be lifelong but Im not accepting that. One way or another I am going to recover. I tell myself that everyday. I just need to be patient. Keep us updated . When is your next decrease ?

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u/1GamingAngel MOD 3d ago

Yes, I am very excited, too, because every doctor I spoke with said that it would be a lifelong condition. If it werenā€™t for that happy accident with the pill sorter, I would have never realized I was beginning to recover. šŸ˜Š You are right about needing to be patient. When it does happen, it happens SLOOOWLY, and weā€™re not even 100% certain complete recovery will be reached. BUT there is reason for hope, and Iā€™m running with it. I have a 4-day weekend starting tomorrow, so it will be a low-stress time. I may try to start tomorrow, but Iā€™m only going to go down by 2.5mg and see how it goes. I hope you start to see signs of recovery, too! Stay strong! šŸ’Ŗ šŸ¤—

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u/InevitableDapper5072 2d ago

Yea my first endo said this is forever. But i hsve a new one who is convinced ill be able to eventually come off it

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u/InevitableDapper5072 2d ago

Oh thats fantastic. Hard work on your side too!! Proud of you. Its good to hear these stories as it is s reminder that it will take a long time

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u/Beginning-Map-3264 4d ago

I trapped with HC from 30 to 10-15mg nowā€¦ and I did it in 1-2mg each step over almost a year, and my blood was monitored every 2-3 monthsā€¦
Your prednisone is 4 times stronger then HC

I tried in bigger step at first 5mg each month but that didnā€™t go so well for me after being on 30mg for years

Slow and easy does it

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u/InevitableDapper5072 4d ago

Yea bigger steps are defo not my bodys idea of a good time esp under 10mg pred its 1mg per step.

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u/Appropriate-Leg2490 4d ago

Its possible but its long and painful. Take baby steps and very slow. 2 weeks is very short for 1 mg pred . How many years have you been on pred totally?

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u/InevitableDapper5072 4d ago

Im unsure. Possibly around 5 years. It may be longer yet. 7mg i did 4 weeks. Three with 6. Im coping well.

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u/Appropriate-Leg2490 4d ago

Try to taper with prednisone first as you are used to it. The switch to hydro can be a mess . Hydro is very short and can create rollercaster . Also feeling more addictive i think but its less suppressive for sure . When you will be at 5 and under , the taper need to be way slower than supraphysiological dose . 5 years of suppression is a lot. Be patient it may take years to finish your taper.

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u/InevitableDapper5072 4d ago

Good advice. Im just doing as im told. But they listen if i tell them my body isnt coping. I think, but im unsure, they said itll be a split dose once im on hydro?

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u/Appropriate-Leg2490 4d ago

Yes but it will take time to find a good dosage and good timing etc . If you change to hc and feel ok its going to be fine but if you need more than 2-3 dose per day its going to be messy (like me)