u/vulcanhybrid0

And it wasn’t that helpful?? I told her my history with cancer treatment and prednisone use. Showed her my undetectable cortisol and ACTH labs that I had from my oncologist. She said “I’m not convinced all your symptoms might be from adrenal insufficiency.” Then she said a lot of my symptoms could be anxiety induced. Which immediately put on a red flag. And when she reviewed my meds she said budesonide is a very potent steroid and that if I was taking 9mg of that a day, that I didn’t need hydrocortisone. At that point my boyfriend stepped in and said she barely feels okay with 30 mg of hydrocortisone a day, it’s literally her lifeline. I told her that I had always been told that budesonide doesn’t absorb much systemically. She then stepped back and said that if I felt good on 30 mg per day then she was okay to keep me on that but to taper to 25 mg in one or two weeks. She said she would do her own bloodwork until September, which seems like a long time from now. She explained sick day rules and prescribed an emergency kit. And then basically said I might be on steroids for the rest of my life but that time would tell.
She told me to split the dose
15mg -8 am
5mg - 3 pm
10mg- 7 pm
Idk what I expected but I left the appointment feeling let down.

Again I’m new to this. I hate to post again.
Context is I’m still waiting to get seen by an endocrinologist, used prednisone for 3 months and my labs came back as Adrenocorticotropic
Hormone
<1.5pg/mL.

Cortisol <0.50mcg/dL.

Oncologist prescribed hydrocortisone and I’ve been messing around with my doses.
Most day I’ve felt awful and this has been a very scary experience. The issue is that now I keep getting diarrhea. Not sure if it’s related to this whole adrenal insufficiency thing but it’s happening. Should I be upping my dose when I get diarrhea. My oncologist is aware but didn’t say anything. She just ran tests to rule out infection. But from reading posts here you guys talk a lot about up dosing on sick days. Any guidance is appreciated.

For those that have gotten a DLI, what was the process? did you get chemo before it? Bone marrow is clear of disease, it has been since my BMT 2 years ago.

However to treat my CNS relapse they nuked me with Cytarabine back in Feb and my bone marrow won’t make platelets ever since. So they’re talking about another transplant or DLI.

Has anyone been prescribed 50 mg of hydrocortisone a day? Feeling off and anxious and just not like myself. Swollen feet as well. It’s only my third day on it. Oncologist prescribed it after I tapered of prednisone and was feeling awful. Cortisol in the AM was undetectable. This was after long term prednisone use. Waiting on endocrinology appointment.

Wanted to reach out and see if anyone has had a similar experience and what I can expect. I had been on prednisone since Feb of this year due to cancer treatment. I was “slowly being tapered.” I started at 80 mg and by the time I reached 15 mg I start feeling awful. Aches, flu-like symptoms,etc. but two weeks ago when I went from 2.5 mg to 0 mg, I just started feeling like I was on the verge of dying every single day. This past Monday after begging my oncologist to do something for me, she orders a morning cortisol level which came back undetectable. She prescribed me 25 mg of Hydrocortisone twice a day and Floricef once a day. It’s only my third day today, what should I expect? She didn’t talk to me about side effects and I did ask for an endocrinology referral.

Favorite place to buy collectibles and blind boxes??

Receiving inthratecal chemo in my spine once a month as prophylaxis. Dexamethasone and Methotrexate. How do you guys usually feel afterwards?

Last time I just felt a little fatigued but this time around I feel a little mentally foggy.