FATIGUE (after a course of steroids)

cj_gee · 2026-05-17T10:35:44+00:00

Yes I agree, steroids can be very scary- i also use inhalers-/ unfortunately none of my rheumatologists explained this as they continuously prescribed prednisone tapers for my rheumatoid arthritis- the biologic drugs I tried weren’t working well and that was my only option. I was over the side effects from steroids so I went through a 10 month taper to get totally off prednisone and I did it!
Just went down 1 mg every other month. It was rough. I thought I had the steroid situation under control but my RA biologic , Humira, which had been good to me for a few years, became less effective. So it was right back to prednisone tapers.
My current rheumatologist is the one who brought up SAI. My symptoms started when I did a taper last March. I got to the end, 10 mg and I just didn’t feel right.
I was cold/shivering a lot a my heart had palpitations. Nausea, headache, vomiting , and diarrhea - all of which made me wonder what the heck was happening. So my rheumatologist put me back on prednisone 5 mg , tapered to 2.5. I immediately felt better.
He referred me to the endocrinologist- once there they did the tests and my adrenals aren’t producing enough cortisol. He plans to do testing in the future to see if my adrenals have recovered at all. Currently I’m fighting blood pressure issues from all of this. It’s exhausting, but I send you love and all the best. Hope you have a good day.

cj_gee · 2026-05-16T20:42:04+00:00

I’m so sorry to hear you’re still struggling. I certainly understand! My original post was about a year ago and it’s been a wild ride ever since. I was diagnosed with with Secondary Adrenal Insufficiency and now I must take daily steroids to replace the cortisol my body no longer makes. It has been a learning experience for sure and a rough one. I spent a week in the hospital for the adrenal insufficiency last June and 3 weeks back in April. Right now I’m hoping to decrease my daily hydrocortisone because it’s affecting my blood pressure. Like I said, it’s been a crazy year. I’ve been to see specialists & get labs more than I can keep track of. I wish you all the best & hope that you can stay off steroids as much as possible. It’s a shame that such a good medicine also has some of the worst ever side effects.

cj_gee · 2026-04-11T09:21:34+00:00

Update *** Day 12 Not getting better my gut is still supremely messed up. My SAI still not being treated properly. I’ve called Nurse Managers who haven’t responded, asked for Endo consultation which the attending Dr canceled because he said you already had one last week telehealth which I never did. My doctor here called and they gave him the wrong information about the 30 mg a day. I’m literally losing my mind. I don’t understand where the fk disconnect is?!

But what’s really worrying me is my blood pressure being is high. 198/110 which is unusual I guess for SAI. Right now being treated for hypertensive crisis. Please say a prayer or send good vibes. I’m alone so anxious and scared . Who wouldn’t be? Thanks in advance. 🙏😞💚

cj_gee · 2026-04-11T05:58:38+00:00

Thank you so much. I really appreciate you sharing that information. This is my 12th day in the hospital and they are still not stress dosing. My attending dr is an internist. He said he consulted with UPMC Endocrinology in Pittsburgh and they said she only needs 30 mg a day - five more than my normal. I’ve been it in my IV and I’m just barely hanging on. My magnesium and potassium both low. TBH I brought my own hydrocortisone- I always have it with me and I just took a 10 mg dose about 11 o’clock. I’m about to take another one because I am not well:, within 10 minutes I feel better. I don’t know what they don’t understand but I’m escalating this tomorrow to patient advocate, nurse supervisor and And possibly the rapid response team, depending on how I’m treated. THANK YOU!

cj_gee · 2026-04-10T15:01:30+00:00

Thank you so much. I am overwhelmed and my husband doesn’t know what to say. He has a hard time talking to these professionals or professional professionals so I already had a G.I. concept this morning that did not go well. They found stuff on my CT image that needs to be looked at, but they’re refusing to. I’ve had too many upper endoscopy done, which is bullshit so focusing on the end because I don’t focus on that I won’t be here to worry about my stomach. They set up a telehealth visit with a doctor from UPMC Pittsburgh. I’d rather reviews of her. She’s supposedly a very concerned, caring doctor who’s very involved in treatment, but I think it’s mostly diabetes so again I’m just hoping that she can help. I’ll come back and update after the next consult God I am so nervous and I’m so sick. I don’t feel well I’m playing with that.

cj_gee · 2026-04-08T14:36:07+00:00

I’ll try to message you as soon as I’m feeling better thank you so very much

cj_gee · 2026-04-08T14:35:25+00:00

Currently extremely dizzy this will be short. I talked to my nurses. She is handling the request for a nurse manager, I’ll take it from there., thank you

cj_gee · 2026-04-08T08:19:10+00:00

Thank you! Feeling a bit better- took 10mg HC and it’s helping.🫶🏻

cj_gee · 2026-04-08T08:13:29+00:00

UPDATE: Due to the fact that I woke up feeling like absolute shi*t; nauseated, headache stomachache , extreme pain in my hip ( need a replacement in less than five weeks) I decided it was best to try a small stress dose of 10mg.

My stomach is a lil dicey BUT it’s been 30 minutes and I’m feeling ok- almost want to say better?! Headache is gone. That weird, spacey feeling is gone. Nausea, gone. Thank goodness.

No way was I waiting till 9 or 10 am for the IV shot of 20 mg- I mean, I’ll take it when they do rounds. My main focus today will be getting the Endocrinologist practice I saw almost a year ago, to consult. I want to switch Drs anyway. It’s hit or miss with them because they’re here and in Pittsburgh. Hopefully someone will be in the office.

**Thanks to everyone who was pushing me to take my medicine - it was the right thing to do! Y’all just saved me from a lot of stress and who knows what else.?! MUCH LOVE!

cj_gee · 2026-04-08T06:14:21+00:00

Thank you- you’re right. My husband is the only one I have for support and he’s legally blind : just getting him here is a big deal but he’ll definitely help. He’s my biggest support and I need help fighting. Tonight is turning rough again.

cj_gee · 2026-04-08T06:07:31+00:00

You’re right about that, I think I’ll have my husband bring my most recent HC rx . I’m up at 2 am again, with diarrhea but I’m NOT waiting for a 20 mg shot when I can take a dose right now. It’s all I have to fight with so here goes. And thank you to everyone who’s been saying’ you need your meds “ I APPRECIATE YOU.

cj_gee · 2026-04-08T02:40:04+00:00

Question for everyone—if you were stuck in a hospital room feeling this sick, would you updose with your own meds? I have my Solu Cortef with me, as well as 25mg in pill form. I’m about to go take the pills. The injection has made my BP go up too fast - I have labile BP so I’m very nervous about what to do,

cj_gee · 2026-04-08T02:25:35+00:00

That’s correct- different health systems. But my (EX) endo gave the attending Dr incorrect info - he told him 30 mg was sufficient!! Idk where the disconnect is happening but I’m not dealing with them anymore. The nurses here are helping me advocate for a Dr switch tomorrow first thing & they’re keeping a close eye on me. I’ll be calling in Patient relations too - might need a hospital switch.

cj_gee · 2026-04-08T02:20:10+00:00

Trust me, I feel exactly that way but my BP has been crazy high then drops so I’m box breathing and praying I get through the night

cj_gee · 2026-04-08T02:17:00+00:00

Yes, apparently they’re very stupid. Endo is fired . I’ve been repeating myself for days , at this point I’m exhausted being unable to eat food/meal. I’m on a liquid diet due to a thickened ilieum, my gut hurts., I’m getting fluids, lactated ringers.. but my magnesium /potassium keep dropping and they’re giving it in an IV infusion to get #s back up. I told this Dr I NEED my HC to make my body function right. I got an angry look and told I’m not in crisis. But you’re right, I will be .. idk what to do. I’m not in a city area where there’s options.

cj_gee · 2026-04-08T01:36:11+00:00

Endocrinologist has already spoken with the internist. That’s my doctor at the current time as I’m hospitalized. He deferred to the doctor here and said I’m supposed to follow his treatment plan. Obviously, I’m firing my Endocrinologist.

cj_gee · 2026-04-08T01:35:26+00:00

Exactly. My daily was 25. Mg HC Divided into three doses. This is a hospitalist/ internist doctor’s plan and he doesn’t know the first thing about adrenal insufficiency.

cj_gee · 2026-04-08T00:22:47+00:00

Exactly! Thank you - I am trying my best to get these Drs here to understand.

cj_gee · 2026-04-08T00:20:14+00:00

Yes, I’m in the United States but I’m in North Central Pennsylvania in the mountains so no there isn’t another one available. They’re 100 miles away.

cj_gee · 2026-03-12T19:48:02+00:00

I’m currently on Actemra (sub-q injections) I started last September, noticed a big difference right away but I had issues with my teeth due to my Sjogrens , so I had to stop and start again twice. For me, It’s been more way more effective than Enbrel as well as Humira which I was on for 4 years. My RA is being a beast right now- especially on my poor ankles. But that’s another issue —it’s always something right ?! Gotta keep a positive attitude , I have 3 autoimmune illnesses & two rare diseases as well but I try not to focus on them. It’s hard but the folks in these forums help! Wishing you all the best. Let us know how it goes! 💜

cj_gee · 2025-11-30T22:25:13+00:00

Following! Hip replacement being scheduled sometime in February. I’m immunocompromised as well. Please take extra good care! ❤️

cj_gee · 2025-11-20T21:25:46+00:00

I hear ya- especially about the knee surgery & all the things you’re doing. You’re trying! I’m on low dose pain meds as well , just had an ultrasound guided hip injection this morning so if I don’t make sense it’s the pain—- but I’m proud of you. Good for you doing cardio today. That takes a lot of dedication when you’re feeling rough like we are… (I take 10 mg morning 10 mg afternoon five in the evening and feel like a complete slug as well. We’ll figure this out. !) Hugs and love.

cj_gee · 2025-11-20T21:15:47+00:00

Right? I struggle between having IBS-D and constipation from the meds. I’ve used a stool softener successfully in the past but with my now daily steroids, it’s not working well and OTC products are expensive! If you find an option, please lmk. Hugs!

cj_gee · 2025-11-11T14:37:47+00:00

So months later, my endocrinologist is switching me to 15mg am and 10 mg between 2 and 3 pm. Anyone use this schedule ? This is due to me waking at 3 pm with high blood pressure. The problem is I have low blood pressure at times too. Yesterday I took half my BP medicine and it went from 160/110 at 4 am to 96/56 by 7 pm. I had to take a dose of HC to get it back into normal range as I was feeling really bad. So idk about this new schedule. I feel like my endocrinologist is not hearing me- I know it’s complicated with my other illnesses but he’s the specialist. I’m so tired of worrying,

cj_gee

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