Friday, May 11, 2012

Mornings With Addison's Disease

This is going to be a long post, but I think it's so important to share some of these things for others in my situation. If it gets long for you, no worries, I'll see you tomorrow for a style or decor post.

From Garnet Hill
 I will never admit to being an early-bird, but once I'm up and out of bed I'm alert and ready to start the day. I don't need coffee, a shower to wake me up, or an hour of don't-talk-to-me-time. In the past, my roommates would get annoyed by my cheerful chattering in the mornings. However, when I got sick with Addison's, mornings became a whole new experience for me.

A typical morning right after diagnosis was brutal. Waking up to an alarm is never fun, but it became very difficult to pull myself out of sleep. Once I was awake, my body was achy, unsteady, weak and I was very nauseous. After being out of the office while in the hospital I was trying so hard to make it to work on-time every morning, but it took twice as long to get ready.

I would walk to the bathroom, sit down to rest for a few minutes. Start the shower and undress, and sit down to catch my breath. Next I would stand in the shower until I couldn't stand up any more. Then get out, sit down and catch my breath and wait until I wasn't dizzy anymore.

Once ready for work, I was golden, but some days it seemed like I would never make it. Some mornings I didn't. The anxiety I dealt with during this time was especially overwhelming in the mornings. Feeling sick and weak made me feel even more anxious, and being anxious made me more nauseous. I felt hopeless at times.

Here I was, several months after being diagnosed with a chronic illness and I wasn't sure if the rest of my life was going to look this way. Well, I'm here to say that it has been 2 years and 7 months since I was diagnosed with Addison's disease, and my mornings do look different (most days).

When I was first diagnosed, I was treated with the steroid Prednisone. Many people with Addison's take it. It's an accepted treatment option, but it just wasn't right for me. Prednisone is a long-lasting steroid that takes up to 2 hours to become active in your body. My dosing schedule was 5mg at 6 am and 2.5 mg in the afternoon. My afternoon dose was wearing off long before 6:30 AM when I got up in the morning, and it was too soon for my 6 AM dose to be working.

In February of 2010 I couldn't take it any longer. With some help from my Mom, I did some research and found out that most people with Addison's take another steroid for cortisol replacement. I read that Hydrocortisone is much more quickly metabolized and is easier on your body. Desperate to feel better, I decided I wanted to switch. Talking to my doctor about this was scary, I wasn't sure if he would agree to it. (My mistrust of doctors is a whole different story.) But I have a great Endocrinologist, who is very willing to discuss any questions I have about my treatment. I was happy to find out that Hydrocortisone was another drug he was willing to prescribe. He prescribed Prednisone first because it offers longer-lasting coverage, and you have to take it less than HC (Hydrocorisone), but he was more than willing to let me try something else if I wanted to.

My new dosing schedule with HC went like this: 10 mg at 6 AM, 5mg at 12 noon, and 5mg at 3
PM. I felt better within days. Mornings were bright and sunny again. I started to feel alert and less nauseous, and overtime I built up more and more stamina. In my opinion, HC is a much better option than Prednisone. It's so much more flexible. It only takes 30 minutes to kick in, it's easy to stress dose with HC because the dose is smaller and if you take too much it doesn't give you ill effects for as long. HC also has mineralcorticoid properties just like Fludrocortisone (the other steroid I take), which means that it help keep my electrolytes in balance.

Today I feel like mornings are the best part of my day energy-wise. I take my thyroid medicine at 5 AM, 10 mg of HC at 5:45 AM, then get up around 6:15 or 6:30. I feel strong and ready to face the day. When I take my medicine on schedule, don't have a rough night, and am feeling healthy-I can now expect to have good mornings. I've even started to take Brody on long walks in the morning. The air feels fresh and new, and I feel so far away from 2 years ago.

I am not a doctor, and all of what I write about Addison's disease is learned from experience or is my own opinion. Please make sure to be under a doctor's care if you believe you might have a chronic health condition. 


9 comments:

  1. I agree that HC is a much better steroid for those with Addison's Disease. When I first tried it ! Wow, what a difference...it was like a cloud lifted. I had felt very depressed and hopeless...mainly because I was taking the wrong steroid for me! It still took a while for me to get the right medicines and routine for me and I needed better thyroid treatment. While I am still not "normal" it is a lot better!

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    1. It's amazing, huh? I think some people do just fine on Prednisone- but I wonder what they might be missing by not trying HC? Although I know that some people burn through medicine really really quickly and Pred or another long acting steroid works better in that situation.

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  2. Suzy, wow... so glad that you have found a great medicine and things are going so well! Love ya girl!

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    1. Thanks Nadjy! I found your blog! ")

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  3. I have Addison's disease also. Have had since 1994. I was on 30 mg hydrocortisone for most of that time but now my new endocrinologist has me down to 15 mg daily. I am always paranoid in the winter that I am going to get the flu....it is really rough getting the flu with Addison's. Going to keep an eye on your blog. Don't know anyone that has Addison's disease.

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    1. Hi Betsy! it's good to hear from you! since I've only had Addison's for a short time I love connecting with people like you who know the ropes. I was doing 15 mg for awhile, but I've since changed some other things around and have since gone back up to 20 mg. It's easy to feel like you're taking too much and want to back down on your dose, I've found. But I do feel better on 20 mg than 15, especially now that I'm in the thick of wedding planning!

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  4. I wish you to have mornings and the happy days, always!...

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  5. Hello Suzanna,

    Thanks for sharing this information. I was wondering do you ever get hot flashes after you take your thyroid and hydrocortisone. I am having a hard time managing both hypo ( Hashimoto Thyroiditis ) and Addison's. No doc has bee able to figure it out. I was told that Addison causing hot flashes due to fluctuations of cortisol affecting our blood sugar. (low cortisol low sugar- hypoglycemia, so maybe my hotness, sweats coming from not taking enough cortisol right?

    I take 12.5mg sometimes 15mg in morning and then wait 30 min. Take 75mcg of levothyroid and 7. 5mcg of cytomel. Then drink coffee. Ugh! I know but I love my cup of coffee :). Then 1 hour later here comes then hot flashes. Does your doctor check ACTH plasma to see if you are taking too much cortisone. Mine ACTH is normally ok. So the hotness not from taking too much. Well, if this is truely accurate testing. I have read that nothing is really accurate testing after you are own hydrocortisone for Addison's. So how do we really know if we are taking too much or not enough. These darn symptoms sometimes are the same for too much and too little cortisol. Plus, I am losing weight instead of getting my weight back. Endo can not figure this out either! I want to go back to work full time, but don't feel good have the time due to chronic pain. I do have Sjogrens, chronic lymes disease too.

    Do you have any good advice?

    Warm regards



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  6. Hi Suzanna! OH MY GOODNESS! You just described my mornings to a t! I've been on Prednisone for 6 months now for AD. Just today, I started a Hydrocortisone and Fludrocortisone regimen and stopped taking Prednisone. Reading this gives me hope that my mornings will become sunny again too! My boss might go into shock when I arrive at work on time again. Before Prednisone, I was always at least 15 minutes early. I can't remember the last time I was on time recently. I feel like such a slacker sometimes, but he is, fortunately, very understanding of my disease. Thanks for making me feel like I'm not alone. :) T.J.

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