Switching to Hydrocortisone

[Sangye]

I saw my endocrinologist again today and I'm going to switch to hydrocortisone because
1) We can test my adrenal function while I'm taking it. (The only way to do that while on pred is to go off of it for 2-3 days. Not a possibility for me!)

2) Hydrocortisone more closely resembles the way cortisol works in the body. It has a shorter half-life than pred so when it wears off each day it forces the adrenals to start working.

3) If my adrenals don't start working again, it's safer for me to be on hydrocortisone rather than pred long-term. Not a ton safer, but some.

4) If my adrenals do start working again, I can taper off the hydrocortisone and be off pred and hydrocortisone altogether.

Even though I'm the one choosing this, I'm pretty apprehensive. I know pred and how to manipulate it. This is a whole new thing and I can't change the dosage on my own. I'm worried about crashing in the evenings when it wears off, or on days that are more demanding. Also, it doesn't have the anti-inflammatory properties that pred has, so I'm wondering how much pain I'll be in. I still have a fair amount of pain on a regular basis and probably couldn't function if I had more.

I shouldn't get worse side effects than with 2.5 mg pred. Hydrocortisone raises the bp worse than pred though--hopefully that won't become a problem since I have very good bp.

The plan is to start the hydrocortisone and do blood tests for adrenal function in 2 weeks. If my adrenals aren't working at all, we re-test every 3 months. After about 9 months if my adrenals still haven't come back on I'll just stay on the hydrocortisone. It's a very low dose-- equivalent to the 2.5mg pred I'm on.

Dr Seo doesn't think the 2.5 mg pred is controlling the Wegs right now-- the rtx is doing that. I'm not 100% about that but we won't know unless we try. He also thinks it won't work and I'll have to try again in a year. But he wants me to try it. I have no idea what will happen!

[pberggren1]

This is so scary Sangye. I so feel for you. Switching to another med like this, even though it is similar, is so risky. You never know what you are going to get until you try it. I sure hope your adrenals come back and you can get off the steroids completely.

[Psyborg]

I've got my fingers crossed for you Sangye. I hope that you'll get optimal results and make some progress.

[Sangye]

Thanks guys. I feel like I'm a bit in the dark with it. The endocrinologist doesn't offer much explanation or information unless I ask, and then she is quite rushed about answering. She is enormously overbooked since she's the only adrenal specialist in the endocrinology dept. They squeezed in an extra 11 patients the morning I was there. That was just the morning!

I'm so accustomed to Dr Seo, my ENT, otologist and other JHU docs offering very thorough explanations of everything even without me asking. Good thing I know what to ask or I would have left with a prescription and lab slip and not much more!

[watersedge]

Hope it works for you and gives your adrenals a kick start, wishing you the best of luck.

[Sangye]

Thank you! For several hours today I felt like I was on major caffeine or something-- heart racing, mind racing, shaky, etc.... It eased up by late afternoon. I did okay pain-wise today. If the racing thing continues I'll call the doctor.

[Sangye]

Just an update on how the hydrocortisone is going.... Some days I'm still getting the major caffeine symptoms but not every day. It's very disconcerting when it happens. I'm getting a huge amount of fluid retention though, and am having trouble walking. My legs have so much fluid they feel like lead. I'm super tired--worse than normal. I had been able to do simple errands every few days and not crash too badly. But if I do something really non-demanding I'm a complete wreck the next few days. One good thing is that I actually think I have less pain with the hydrocortisone than I did with the pred. I have no idea how that is possible though. LOL

I just talked to my endocrinologist and she wants me to do the adrenal function labs tomorrow instead of waiting another week. We're not certain if I need more or less hydrocortisone, or what the heck is happening. With pred I was able to tell but I am totally lost with this drug.

[Sangye]

Wow, today was unbelievably difficult. I had to get up at 5:30, take care of 3 animals and myself and then drive myself 2 hrs to JHU for the adrenal function labs-- all without pred or hydrocortisone. I was a wreck by the time I arrived. I can't imagine that my adrenals are functioning at all. I hope the labs come back tomorrow.

Even though I took the normal dose of hydrocortisone after the blood draw, I never recovered all day. I feel awful. Yesterday I was so exhausted from doing some very simple errands the day before that I went back to bed TWICE. I don't even recall the last time I did that.

[pberggren1]

This does not sound promising. I don't even know how you could drive that far. Even though I am in much better shape than you I don't think I could drive that far both ways. If I was able I am sure I would crash for a few days. I used to be able to drive long distances but since the pred has make the vision a bit blurry and I have constant pus in my eyes it makes it a bit fatiguing in that area as well. I used to be able to handle stress much better too. I sure hope your adrenals can come back on so you can get off pred or hydrocortisone totally. I am a bit fearful that once I get to 5mg or lower that I will not be able to get off of it either.

[Psyborg]

Sounds like its not working out very well. How long will they experiment before they move you back to Pred? I'd hate to see you end up with a big flare up over it