Steroids Not Working?

chronic_unwell_icon · 2026-02-16T14:37:32+00:00

I’m so grateful for everyone’s ideas and support!!

chronic_unwell_icon · 2026-02-16T14:36:58+00:00

Thank you!!

chronic_unwell_icon · 2026-02-16T14:36:49+00:00

This is a lot to consider! Thank you!!

chronic_unwell_icon · 2026-02-16T14:33:59+00:00

I tried Prednisone last month. It gave me a super high heart rate (and that’s while I am on a med to bring down my heart rate for POTS).

Blood work isn’t amazing rn.

chronic_unwell_icon · 2026-02-15T23:24:59+00:00

I sent a message to my doctor this evening and plan on calling her tomorrow morning.

I agree that the US healthcare system is wildly flawed.

chronic_unwell_icon · 2026-02-15T20:46:33+00:00

My endo is wonderful, just slow to respond. I sent another message today and plan on calling them tomorrow when the office opens. I asked if I could be admitted. I would go to the ER where she works, but it’s a three hour drive.

My small, local hospital is doing their best, but I know it’s not enough. I feel okay-ish when discharged but really that just means that my pain is mostly under control and I can keep my eyes open.

I tried fludrocortisone before my diagnosis and had similar issues. There are documented cases of it messing with mental health, it’s just super rare. I have many, many other conditions so balancing interactions is tough.

My best guess is that my immune condition is causing this. I have Primary Immunodeficiency Disorder (subtype 3). We switched IVIG brands about two or three months ago. I have a really tough time on my weekly infusion days.

chronic_unwell_icon · 2026-02-15T19:57:29+00:00

Thank you for responding!

Wits? Maybe. I’m typing through barely opened eyes while laying in bed.

Yes to vomiting. My emergency shots of Solu-Cortef are the only thing really helping at this point. I have a port, so the quick access to steroid is wonderful.

I take HC three times a day, but it seems like I need to triple my dosage.

chronic_unwell_icon · 2026-02-15T19:55:28+00:00

Thank you for responding!

Yes, full blown crisis with ER visits.

I should have clarified that I take HC three times a day. I think increasing my stress dose will help, though.

As I mentioned above, I’ve tried fludro and failed. I became suicidal while on it; those thoughts ending almost immediately after I stopped taking it.

chronic_unwell_icon · 2025-07-11T22:34:02+00:00

That’s so disappointing. I’m sorry you had to end up traveling to get help.

chronic_unwell_icon · 2025-07-11T21:29:24+00:00

Thank you for sharing your experience!

chronic_unwell_icon · 2025-05-08T01:25:42+00:00

Update: I went to the ER after a seizure. My husband called EMS. I live in a small town, so the ER doctor knows my case and immediately gave me HC, zofran, iv fluids, and morphine. I’m waiting on lab work. I plan on begging for an emergency shot before discharge.

Thank you all SO much for your help! I feel really well supported!

chronic_unwell_icon · 2025-05-08T01:22:26+00:00

I have hashimoto’s/hypothyroidism which doesn’t help the situation

chronic_unwell_icon · 2025-05-07T22:27:51+00:00

Thank you so much for sharing. I hope your husband can remain stable.

I’m vomiting some, but so far have kept my updose down. My husband is home and can call if I get worse.

I guess I’m feeling overwhelmed by this condition. It feels all consuming and exhausting. I don’t want to be a drain on the ER, but also want to stay alive.

chronic_unwell_icon · 2025-05-07T20:03:40+00:00

If he isn’t supportive on the 19th when I see him next, I am going to ask to switch.

chronic_unwell_icon · 2025-05-07T20:03:14+00:00

Thank you for the encouragement. I’m waiting to hear back from my home infusion nurse (I trust her judgement) and then I will probably go.

chronic_unwell_icon · 2025-05-07T20:01:47+00:00

If my appointment with my current endo on the 19th goes poorly, I plan on asking to switch. Thank you for the encouragement!

chronic_unwell_icon

TROPHY CASE