PDA

View Full Version : Switching to Hydrocortisone



Sangye
08-11-2011, 12:55 PM
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! :rolleyes1:

pberggren1
08-11-2011, 04:24 PM
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
08-11-2011, 09:29 PM
I've got my fingers crossed for you Sangye. I hope that you'll get optimal results and make some progress.

Sangye
08-11-2011, 11:44 PM
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
08-12-2011, 03:40 AM
Hope it works for you and gives your adrenals a kick start, wishing you the best of luck.

Sangye
08-12-2011, 11:52 AM
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
08-18-2011, 02:17 AM
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
08-19-2011, 12:17 PM
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. :sad:

pberggren1
08-19-2011, 12:33 PM
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
08-19-2011, 09:21 PM
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 :(

Sangye
08-20-2011, 12:52 AM
Neither the endocrinologist nor I are talking about going back to pred. The HC dose I'm on is extremely low so it just may be a case of increasing it. Yesterday's adrenal function labs will tell us if my adrenals are working at all. That determines what we do.

As lousy as I feel in some ways, I actually feel much better on HC than pred in other ways. I can really feel the difference. Pred--even 2.5mg-- felt like getting hit with a brick every day. The HC feels smoother in my body.A lousy 2.5mg pred made my face swell (worse the more tired I got), but I don't have that with HC.

Even though I was in awful shape yesterday my therapist said I looked better than usual in some subtle way and that I was smiling more. I smile and laugh a lot so that was something.

Chris G
08-20-2011, 12:55 AM
I really hope this works for you Sangye. This drug change is very interesting to me. Is it commonly use as a sort of a step-down for people on low dose pred - to get off of it all together?

Sangye
08-20-2011, 01:12 AM
Thanks Chris. I had asked Dr Seo about seeing an endocrinologist for my adrenals. If I hadn't asked he would have just kept me on 2.5 mg pred forever. I had trouble with tapering in the past, and he felt that 1) I couldn't get off it at this point and 2) 2.5mg is not enough to worry about.

But I have never felt right on pred, and I have never recovered my strength or any physical endurance.

The endocrinologist is the one who suggested HC for all the reasons I gave in the beginning of this thread.

DEE
08-20-2011, 01:15 AM
Hope today alittle better Sangye .That the new tablets start to help you . DEEx

Brooke
08-20-2011, 01:45 AM
Just saw this post Sangye. Hope you are feeling better, did they say how long it would take for this to start working? Or does it work right away? Are you going to ask if you need to bump up the dose? Is it a pill?

Sangye
08-20-2011, 01:48 AM
It starts working right away. The doc told me to bump up the dose today to see how it goes. It's a pill. You take a larger dose right when you wake up and a second dose at 2 pm.

pberggren1
08-20-2011, 11:27 AM
What happens if you are like me and sometimes don't get up til after 2pm? lol

Sangye
08-21-2011, 01:01 AM
Even when I'm in really bad shape I can't lay in bed all morning. I have to get up and start the day, though it might mean I wind up back in bed a couple hours later. I also have 3 animals to take care of! I had to take the pred first thing in the morning too, or I'd be a mess by midday.

Sangye
09-01-2011, 10:14 AM
I got the results of my adrenal function tests and spoke with the endocrinologist. According to the test my adrenals are functioning--not at a normal level, but not absolute adrenal insufficiency level, either. I have my doubts as to whether the results are accurate--blood tests for hormones often are-- but assuming they are accurate, the doctor said it's safe for me to try tapering off the hydrocortisone. She is very understanding and wants me to decide if, when and how fast to taper.

I couldn't function at all on the dose she originally had me on. I was worse every day--falling asleep all day and staggering around like it was the middle of the night. I'm better at this increased dose but still not great. I'm going to hang out at this level for a bit and see how I do.

In the next few weeks I'm also going to add in a supplement that supports adrenal health and restores their function. I'll increase it as I decrease the HC. Hopefully that will get my adrenals up and running enough so that I can get off the HC altogether and feel good.

pberggren1
09-01-2011, 10:49 AM
I sure hope you are able to taper off the HC Sangye. Could you tell us what this supplement is?

Sangye
09-01-2011, 10:56 AM
Me too. Mostly I hope that I can feel strong enough. To me it's no victory to say I'm off pred and HC but not be able to get out of bed.

There are various supplements to support adrenal health based on what is needed. I don't use OTC versions as they are terrible quality. It is definitely NOT something you should try yourself as you can get into a lot of trouble--including waking up the Wegs. Even people without Wegs or a history of pred use should not use those supplements without a holistic doctor's help. It's very tricky business. The adrenals make 40 hormones and control a number of bodily functions.

pberggren1
09-01-2011, 05:12 PM
If I have trouble weaning off pred I might go back to my naturopath and see what she thinks. I am at 8mg right now and should be going down to 7mg next week. I think that once I get down to 5mg I might try going down by half a mg every 2 weeks. But I will see what my doc says. He already told me most people do okay by going down 1mg per month to zero. You are right it is no victory at all if you cannot get out of bed if you are off of the steroids.

Sangye
09-02-2011, 01:05 AM
That's a good plan, Phil.