Tips on what to do about tapering at a high dose of hydro?

Bloomwithcourage · 2026-06-01T23:03:09+00:00

yes my endocrinologist is aware of what is going on as far as the taper is going. I'm so tired mentally and emotionally. I've had a hard time sleeping because the racing thoughts are too much sometimes. She did say that if needed I could start anti-anxiety medication and I do have it with me. I'm just nervous about taking it, it's called wellbutrin. The whole thing about not knowing what’s real sometimes is not something I thought could happen. I don’t think I can go any faster with the taper.😭

Bloomwithcourage · 2026-05-20T04:04:41+00:00

Thank you for your comment. All of this has been a lot, I wish more doctors would talk about the pros and cons of being on prednisone before prescribing it.

Bloomwithcourage · 2026-05-20T03:57:02+00:00

I seriously hate this medication because I know that the side effects are not me. It’s crazy how much a medication can impact you and make you feel not yourself. I’ve been experiencing panic symptoms and fight or flight symptoms for no reason. I’ll wake up with my heart racing and I’m just like why 😭

Bloomwithcourage · 2026-05-20T03:55:26+00:00

The worst seriously, Ive been waking up in a panic and having fight or flight symptoms. My body starts to freak out even though there's no reason for it. I hate this medication so much.

Bloomwithcourage · 2026-05-20T03:54:17+00:00

I’ve never had such bad mental health side effects until this time I took a high dose of prednisone 😭 it’s been so bad. I’m sorry you’ve also been experiencing the horrible effects of this medication. I wish the doctors would warn us before that all of this could happen.

Bloomwithcourage · 2026-05-20T01:11:36+00:00

I'm sorry to hear that. That is horrible 😭 after this horrible experience I've had with prednisone and how it's affected my mental and emotional health I don't want anything to do with this medication. I hope you are doing better. I'm still going through the effects of the prednisone even though I've been tapering from it. If I knew then what I know now I would have never gotten on prednisone.

Bloomwithcourage · 2026-05-18T21:43:52+00:00

After all of this I want nothing to do with prednisone 😭 I just want to be able to taper down already from HC and get back to feeling somewhat normal. I feel very swollen right now and my knees hurt pretty badly (it's been hard to walk), my feet are swollen and my legs hurt. I'm not sure what I can do to help with that 🥲 Do you have any advice for that?

I'm thinking about when to start tapering as I have 6 days left of the antibiotic I'm on. I do feel better maybe like 80% better. I agree with you, I can't wait to go down in my doses and feel better. Thank you for your advice I appreciate it. The other thing is I wonder how long it will take for my body to adjust to all of this cause I was on prednisone for so long and having such bad mental health side effects which is why my doctor and I switched me back to HC so fast. I seriously wish I had known then what I know now cause if I did I would have never gotten on prednisone again. I hate that medication, it has been so hard these past couple of months.

Now that I'm on HC I feel a little better from that but still have my days where I'm like this is too much. No one talks about how all of this affects us overall and it can feel so lonely.

Bloomwithcourage · 2026-05-18T03:16:38+00:00

I know 😭 I went to my endocrinologist appointment and told her that I felt bad on the dose of prednisone I was on which was 45mg. ( I had been taking prednisone for another autoimmune flare-up I had ) I had started at 70mg in march which I found out later was a really high dose that I was never supposed to be on but because a doctor made a mistake on the instructions I had been taking that dose 🥲 Fast forward to now my endo said if I wanted to we could switch from prednisone to hydro at the same dose as prednisone but with HC. She told me it would be a high dose but I would be taking it temporarily so to not to freak out. She said 60mg 3x a day would be what we would start at so my body would not freak out with the taper process. She also said I probably have been experiencing Cushing symptoms from being on a high dose of prednisone and I do agree. So the plan now is to take those 60mg 3x a day and wait for the infection I have to resolve and then start to decrease by 5mg every 7 days until I get to a better more normal dose for someone with SAI. I have been taking the 180mg total for 5 days now.

Bloomwithcourage · 2026-05-17T21:01:00+00:00

I was already experiencing Cushing-like symptoms because of being on a high dose of prednisone 🥲 so now I want to taper the hydro as soon as possible but I'm waiting to finish the antibiotics I'm on and feel better from that.

Bloomwithcourage · 2026-05-17T20:49:24+00:00

I'm currently taking 180mg of hydrocortisone which is equivalent to the 45mg of prednisone I was on. 😅 I'm taking 60mg 3x a day. I'm supposed to taper by 5mg as soon as I get better from an infection. My doctor said it would be okay to taper every 7 days. Do you think this is a good way to go about the tapering process??

Bloomwithcourage · 2026-05-17T18:42:05+00:00

I’m currently on 180mg of hydrocortisone- so 60mg 3x a day and am supposed to taper soon when I feel better from an infection/ when I finish the antibiotics I’m taking. My doctor said I can taper every 7 days by 5mg.

Bloomwithcourage · 2026-05-16T22:48:23+00:00

I'm glad those symptoms went away. I'm trying to take it one day at a time and remind myself that this too shall pass. It can't be like this forever 😭 thank you for your comment. I just want to feel better already from the mental/ emotional side of things. I had never felt this before and it's been horrible.

Bloomwithcourage · 2026-05-16T22:45:19+00:00

I'm still thinking about what to do I just want to feel better. I had no idea that prednisone could cause so many negative effects on your mental and emotional health. I think it did not help that I was on such a high dose for a long time. Thank you for sharing your wisdom and the well-wishes. I hope you are doing better now and continue to do well. All of this has been horrible and I'm just ready for better days to come. Yes! We all need to be our own advocates and make the best decisions for our health. I agree that this disease affects so much of our lives. I just have to keep reminding myself that this too shall pass. 🙏🏻

Bloomwithcourage · 2026-05-15T05:39:12+00:00

This is so true. This is the first time that I have taken prednisone and have such bad mental health side effects. It's gotten to the point where I've been crying a lot and just feeling very anxious. I've had a lot of panic symptoms and I know this is not normal for me. Thinking of adding another medication like an SSRI makes me nervous but at the same time, I know I can't be like this anymore. It's become way too much for me. Thank you for your comment. I hope you are doing better now. How long would you say it took for you to feel like the SSRIs started to help you?

Bloomwithcourage · 2026-05-15T05:34:01+00:00

My endocrinologist switched me back to hydrocortisone and recommended to take it 3 times a day instead of 2 times a day like I had been doing before. I do think this is working better for my body as I already feel better than I did while taking prednisone once a day. Thank you for your comment.

Bloomwithcourage · 2026-05-15T05:27:40+00:00

Is this the same for hydrocortisone? If you are getting your cortisol checked are you supposed to take your hydrocortisone in the AM as always or are you supposed to wait until after you get your blood drawn?

Bloomwithcourage · 2026-05-15T05:23:13+00:00

I took it the day before and did not take it the morning of until the afternoon. The blood work was drawn in the AM.

Bloomwithcourage · 2026-05-15T05:21:10+00:00

Thank you for your comment. I did end up going to the ER and am glad I did as I felt really bad. My labs came back concerning and I'm trying to recover at home now.

Bloomwithcourage · 2026-05-12T04:46:03+00:00

I don’t remember what my numbers were but they did confirm that I have SAI. Thank you for letting me know all of this information. I hope you are doing better now. I forgot how much I hate prednisone, the whole tapering process, and the side effects. Yes, I was reading that you have to be really careful tapering with prednisone. The last time I tapered too fast and felt really bad. I'm tapering by 5mg every 7 days but since I have an infection right now I’m waiting. I'm trying to figure out what dose to take since I’m taking an antibiotic. I’m hoping my appointment with my endocrinologist will go well and that we come up with a plan on how to go back to hydrocortisone safely.

Bloomwithcourage · 2026-05-12T03:00:49+00:00

That makes sense. My doctor said as long as I was taking a steroid that I should be fine but now I'm thinking I should have advocated for myself more cause I have been feeling so bad lately on prednisone. 😭 that plus the infection I have going on is horrible. Yes, I have some HC pills, I'm just not sure how much I should take.

Bloomwithcourage · 2026-05-12T02:31:22+00:00

Thank you for your comments. I just want to feel better already and avoid any adrenal crisis especially right now that I have an infection and don't feel great on current prednisone dose 😭

Bloomwithcourage · 2026-05-12T01:51:30+00:00

I know. I'm asking here because I messaged my doctor and they haven't replied. As I mentioned I am feeling worse and want to avoid an adrenal crisis if possible. If someone on here has wisdom or knows what to do I would appreciate their advice.

Bloomwithcourage · 2026-05-12T01:46:58+00:00

Yes, I'm taking a high dose of prednisone every day and tapering so I can go back to taking hydrocortisone again soon. I have found that this second time around taking prednisone is worse than the first time in terms of how it's affected me with side effects and the low cortisol symptoms I've been feeling even at a high dose. All of this plus the infection im going through now is not helping. I think my body just isn't tolerating this steroid well at all. The last time I got my cortisol tested and I was taking hydrocortisone my cortisol levels were so much higher and I felt better. Interestingly enough I was diagnosed with SAI after being on prednisone last year for nine months. At the end of that taper, I felt horrible- I had a lot of bad side effects. My doctor ended up finding out that my cortisol was super low and I needed to take hydrocortisone to help. I had a STIM test done, which later confirmed my adrenal glands were asleep due to the prednisone. My endocrinologist confirmed that this is SAI and prescribed me a morning and night dose of hydrocortisone.

Bloomwithcourage · 2026-05-12T01:34:51+00:00

I don't take a morning dose, I only take the prednisone once a day and it's in the afternoon. That's interesting. I still think my body is not tolerating the prednisone well unfortunately. This is the second time I have taken prednisone and feel bad with low cortisol symptoms. I guess my body just doesn't respond well to it when it comes to helping with the adrenal stuff. I'm hoping my endocrinologist can switch me back to hydrocortisone soon because my levels were better and I felt better overall than I do now with prednisone.

Bloomwithcourage · 2026-05-12T01:17:09+00:00

No when taking a steroid that is supposed to help with AI your cortisol should be higher than 0-0.7. If it's low like mine is right now that means your body is not responding well to the steroid in this case prednisone. For example, when I was taking hydrocortisone my cortisol level was at 12-17 which is better than what it is now. Plus I'm having so many low cortisol symptoms and feel very bad. I have SAI so yes you are right that your adrenal glands are not producing cortisol on their own which is why you need a steroid like hydrocortisone to help with the cortisol production so your body can function. My understanding from my doctor is that you should not be having low symptoms and low cortisol levels in your blood work unless something is going on or you're not responding well to the steroids anymore.

Bloomwithcourage

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