Tuesday, December 6, 2011

Patient Friendly Steroid Tapering for HPA Axis Suppression (aka Secondary Adrenal Insuficiency Due to Steroid Use)

All too often the only tapering regimen offered to patients whose HPA axis has been suppressed is one single am morning dose.

For the majority of patients this is probably fine. Their HPA axis probably can't wait to wake up.

For me? This is a nightmare.

If you are suppressed and tapering is not going so well, here's my dream tapering regimen. One that should minimize pain and maximize energy.

Oh yes, standard disclaimer: Not a doctor and not pretending to be one either. Follow advice on this blog at your own risk.

1. Switch to hydrocortisone. The half life is shorter, which stimulates the HPA axis at night. This is key because recovery will be hindered if steroids are in your system 24/7. The brain needs to be steroid free at night in order for the HPA axis to begin to wake up.

2. Split dose. The bulk of the dose should be in the morning with a small boost around noon. Just to be clear, this is NOT what patients with permanent adrenal insufficiency do. This split dose is designed to keep patients upright during the day while also allowing the steroids to be out of the system at night per #1.

3.Over time, slowly take that noon dose earlier and earlier until it merges with the morning dose. Start with 11:30, then 11, 10:30 and so on to tolerance. Try changing the time every 2 to 3 days and see how it goes.

4.When you can get through a whole day with just an am dose, you can start to cut pills. Up until this point, just moving that noon dose has been your taper.

5.Slow and low is the name of the game. Taper by 1 to 2.5 mg, no more. When your HPA axis is up and running the tapers can be bigger and faster, but until then, the slower and lower, the better. The turtle wins this race, not the rabbit.

6.Whenever you feel good, that's a sign it's time to taper. Feeling good means your body is producing cortisol to fill the gap left by the previous taper and it is safe to taper further.

You don't want to taper before your body has adjusted, that's a brutal thing to do. Going too fast can also put you in the hole. Looking back, I realize I frequently flirted with an adrenal crisis by tapering too fast and underdosing when I had problems. Don't do that.

If you listen to your body, it will tell you what you need much better than any physician or blood test can.

7.Don't taper in the 10-12 days leading up to a menstrual cycle. The hormonal changes can be hard on you when you're suppressed. Now, if you go through a cycle and it's no big deal, then feel free to experiment, but watch yourself closely for signs of strain.

Also avoid tapering during especially busy or stressful days. The day you tell your spouse you want a divorce, for example, would not be a good time to taper.

8.Increase the dose when you are sick or if your parent dies or during any other stressful event. You can wait until your body tells you it needs the steroids, you don't have to make a preemptive strike. Your body will very painfully tell you when it's not making it.

Keep steroids handy so you can take them the second you hit the wall. Within an hour you should feel better. If not, you either need more steroid or the adrenals are not the problem and it's something else.

As for how much to take, well, there are no guideline for stress dosing in the midst of HPA axis suppression. Most docs will not give out any information under the belief that stress dosing is not necessary for suppression (it is) or will pull from the literature on patients with permanent adrenal insufficiency, which does not reflect the core goal of stimulating cortisol production. So you will have to experiment because, with suppression, the goal is always to take as little steroid as possible.

Will an extra 5mg do it or do you need to double or triple the dose? Early on, this will be very hard to decide, but your body will teach you the rules it's going to live by and you'll eventually know exactly what dose you need in various scenarios.

The nice thing about suppression is, if the dose isn't right, your body will cease to function until you take more steroids. There's little room for misinterpretation. Can't get out of bed? Take 5 more mg!

3 comments:

  1. Fantastic post. Should be on a hand out in patient waiting rooms or in a major journal. Way to go.

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  2. It's always good to have advice from a patient. Of all things, medicine should not be "one size fits all". I know there are some modifications allowed in the prescriptive attitude, body weight as a means of judging dosing, but speaking as someone who has experienced some significantly troubling adverse effects of a non-individualized approach to pharmacological management of a chronic health problem, it seems clear to me that if the health care system can't be provide individualized regimens then it's up to patients to research this on their own. Toward that end, it helps so much to have people share their experiences like this.

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  3. Excellent article. I am struggling with the same problem. I was critically ill a few months ago but am finally making progress though my respiratory system is slower to recover than the rest of my body. Tapering has been hard and this article has provided useful information. It is dehabilitating especially as I'm a mum of two kids. I would be extremely grateful to make contact with you - mail me on leanneandphilip@ohotmail.com

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/