Reminiscing: Lessons Learnt Weaning off Steroids

Hello there! It's been a while since I updated this blog. I've been busy managing my illness while dabbling in Triathlons (see my other blog Grace's Tribulations).

I want to thank all of you who have written in, shared your experiences, asked questions and encouraged me these past few years. I received many requests for the 'Pulse and Stretch Protocol' (the Protocol), which I finally got down to posting this year. I continue to recommend (very highly) Dr James Wilson's Adrenal Fatigue: The 21st Century Stress Syndrome  (my Review HERE) to all my readers and from feedback received from various ones of you, this book is the goods!

One thing I've somewhat come to terms with is that my autoimmune illness, Henoch Schonlein Purpura, is something that I may have to manage for the rest of my life. However, I absolutely believe this can be done without steroids.

I actually thought myself 'cured' of HSP in 2007 so it crushed me when I relapsed (under extraordinary stress) in 2009. I had to go back on hydrocortisone and this time found it impossible to wean off, despite my best efforts adhering to the Protocol. I never gave up but it was rough. My lowest point was the winter of Dec 2009, sick as a dog, bloated with steroids, chilled and depressed. In desperation, to escape the cold, I went down south to Florida where I camped out for three months in the Everglades! An unforseen turn of events saw me back in Malaysia from July 2010 where I continued trying to wean off the hydrocortisone.

It is now 2012, and I am thrilled to report that this is day 37 Steroid Free. Not only that, I have abs (See pic below)! Not quite a six pack yet, but my point is that I am in the best physical shape I've been in my 36 years on this Planet. What's more, I may at last, actually, really, be on my way to getting completely better! And I believe I'm much the wiser for all that I've been through.

Does the Pulse and Stretch Protocol really work? 

Thank you for Supporting My Blog!

Thanks so much for stopping by Health Matters! I get lots of feedback from readers thanking me for sharing my experience weaning off steroids. I am glad that my blog has encouraged and helped good folks like you. 


The content on my blog does not replace a doctor's visit, but readers have told me they have benefited hugely from the things I shared - oftentimes even more than what they would have gained from (their limited) face-time with a physician. For those of you who have benefited from my blog, donations (any amount) are much appreciated! 


Quoting from one reader:  


"I, for one, have never gotten any useful advice in the doctor's office about weaning off prednisone.  I think the effort a writer puts into a useful piece of information is certainly worth the price of a copay to the doctor's office or the copay on a prescription."  Sandra M., New Mexico


I am a real person, though not an M.D.. I have suffered as a patient, so I can empathize with your suffering too. Beyond my personal experience on my journey to wellness, I may not be able to advise you on your specific medical condition. However I will always reply to your emails and sign off with a hug. 

Pulse and Stretch Protocol for Weaning off Hydrocortisone or Prednisone

Summary of Post

Here I give part of the Protocol specifically for Hydrocortisone to get you started. Much effort and time has gone into writing this Protocol, which is original content put to the test by myself and also used by hundreds of other readers with whom I have shared it.  

Is this Protocol for you?
This Protocol should be useful to you if you have been on steroids long-term (more than 6 months). If you have been taking steroids for only a few months, you should be able to taper much faster (following your doctor's advice) and won't need this Protocol. 

The Protocol can be adapted to Prednisone, although in my experience it is easier to wean off Hydrocortisone due to its shorter biologic half-life. (To wean off Prednisone, divide the dosages by 4 or use a handy corticosteroid conversion calculator). To facilitate weaning if you are on dexamethasone or corticosteroids with longer biologic half-lives, first switch to prednisone, then if possible, to hydrocortisone.

I have successfully tapered quicker than given in the Protocol, by drastically decreasing stress and increasing rest (read about my lifestyle changes HERE). It really depends on your body and how well you listen to it. I welcome you to email me or leave a comment on my blog if you have any questions and I will get back to you, usually within a day or two. I get half a dozen emails weekly and take time to consider and respond to each one. In return for my time, please do consider leaving me a tip ('Tip Jar' button on right side bar).

Testimonial from a reader

"I, for one, have never gotten any useful advice in the doctor's office about weaning off prednisone.  I think the effort a writer puts into a useful piece of information is certainly worth the price of a copay to the doctor's office or the copay on a prescription." (Sandy M., New Mexico)

IMPORTANT: Consult a licensed health care provider before embarking on this regimen or using any supplement in combination with, or in lieu of any Rx drug.

About Hydrocortisone and Cortisol

Hydrocortisone (HCT) is an important, potent and potentially dangerous R_x drug. Once you take 20-40 mg per day, your adrenal cortex stops producing its own cortisol altogether. Cortisol is the adrenal hormone that HCT and other corticosteroids (prednisone, dexamethasone, etc) simulate. The adrenal cortex may stop producing cortisol when a person is taking 20 mg a day of HCT, while for another person, natural cortisol production may stop when that person is taking 40 mg a day of HCT. Every person is different but the point remains - put in enough of the (synthetic) corticosteroids and the body will halt its own production of the real thing. Dexamethasone and prednisolone have a much longer biologic half-life than HCT and suppress the adrenal glands for a longer period of time.

If you have been on HCT a long time (more than 5 years), at doses of more than 20 mg/day your adrenal cortex may be badly damaged. Cortisol, the natural corticosteroid produced by the adrenal cortex, is necessary for survival. If the adrenal cortex is permanently damaged you will have to take HCT or a similar drug indefinitely. Ask your doctor about the synacthen test to see how well (or if) your adrenal glands are working.

Before Starting the Protocol

1.      I assume you will start your weaning at a dose of 40 mg per day (STEP 1, see ‘The Protocol’ below). For most of you, this is your ‘maintenance dose’, i.e., the minimum dose you take to stay symptom-free. Most people are able to take fairly large reductions in dose above STEP 1. If you are taking 60 mg per day, you will need to cut down your dose gradually, until you are at 40 mg, before starting this Protocol. If you are currently on 25 mg, start at STEP 4.  Start your weaning at the corresponding STEP for your current dose.

2.      You should be on a relatively ‘clean’ diet (i.e., no caffeine, other stimulants, recreational drugs, etc.) Relatively ‘clean’ lifestyle (i.e., nonsmoking, no alcohol at this time, etc.). You should also identify all sources of stress in your life (e.g., relationship, emotional, physical, lack of sleep) and implement changes to minimize this stress. The aim here is to reduce the ‘overhead’ on the body system and enhance both the speed and extent of your success. For more details on lifestyle changes, please read Adrenal Fatigue: The 21st Century Stress Syndrome  by Dr James Wilson (I review the book HERE). I don’t get commissions from Dr Wilson if you buy his book! I actually reviewed it after I had successfully weaned off HCT myself through trial and error, and it would have helped me hugely if I had his book earlier. It’s all there, so please read it!

3.      HCT is available in 10 mg tablets. Use a pill cutter to split a tablet down to 1/8 size (0.125 mg).....
4.
5.
6.

 (the remaining three Notes can be found in the full Protocol, see below)                                                                                                                                                                      
THE PROTOCOL

STEP 1. Take your routine dose of HCT daily for two weeks. Take it at the same time every day. Make sure you are stable.

STEP 2. After two weeks, reduce your dose by 5 mg You are now at 35 mg. Stay there 7-10 days AFTER you stabilize, assuming that within 3 days after the drop you feel some discomfort and that remaining at the new dose the discomfort settles down.

STEP 3. After 7-10 days of STABILITY, drop 5 mg. You are now at 30 mg. Stay there 7-10 days AFTER you stabilize, assuming that within 3 days after the drop you feel some discomfort and that remaining at the new dose the discomfort settles down.

STEP 4. After 7-10 days of STABILITY, drop 5 mg. You are now at 25 mg. Stay there 7-10 days AFTER you stabilize, assuming that within 3 days after the drop you feel some discomfort and that remaining at the new dose the discomfort settles down.

STEP 5. After 7-10 days of STABILITY, drop 5 mg. You are now at 20 mg. Stay there 7-10 days AFTER you stabilize, assuming that within 3 days after the drop you feel some discomfort and that remaining at the new dose the discomfort settles down.

STEP 6. After 7-10 days of STABILITY, drop 2.5 mg. You are now at 17.5 mg. Stay there 7-10 days AFTER you stabilize, assuming that within 3 days after the drop you feel some discomfort and that remaining at the new dose the discomfort settles down.

NOTE: CHANGE IN DROP QUANTITY.

STEP 7. After 7-10 days of STABILITY, drop 2.5 mg. You are now at 15 mg. Stay there 7-10 days AFTER you stabilize, assuming that within 3 days after the drop you feel some discomfort and that remaining at the new dose the discomfort settles down.

STEP 8. After 7-10 days of STABILITY, drop 2.5 mg. You are now at 12.5 mg. Stay there 7-10 days AFTER you stabilize, assuming that within 3 days after the drop you feel some discomfort and that remaining at the new dose the discomfort settles down.

STEP 9. Things often start to get dicey from here on out. At about 12 ± mg, your body has to start producing its own corticosteroids. This is where you start "stretching" or "pulsing".........

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Note: The Protocol continues up to STEP 14. 

You can receive via email the full six page PDF of the Pulse and Stretch Protocol with a secure Paypal payment of $10 below. Your donation will help offset my costs, i.e., hours spent responding to questions on how to wean off steroids. I have been giving my time for free for the past eight years, but I could really use some money now. Thank you for your understanding and your support!

xo Gracie

Good book for adrenal fatigue

The best book I've read so far on understanding adrenal function and recovering from adrenal fatigue is "Adrenal Fatigue: the 21st Century Stress Syndrome" by

James L. Wilson, Johnathan V. Wright.

In a nutshell this is a lay-person format, reader-friendly book written by a REAL doctor who specializes in treating folks with adrenal insufficiency. It gives case studies that you would be surprised may read like your own life, and step-by-step guidance on what lifestyle changes are needed to restore the functioning and health of your adrenal glands. For those who are looking to wean off steroids such as hydrocortisone, prednisone and other corticosteroids, this book is going to be a huge help. I came across this book only after successfully weaning off myself after years of self-guinea-pigging. Listed in the book are many of the lifestyle changes that I myself learnt through trial and error. So spare yourself re-inventing the wheel and just read this!




xo Gracie

Weaning Off Prednisone, Hydrocortisone Corticosteroids

Summary of Post
This article outlines my regimen and steps I took to wean off steroids after nearly 9 years on steroids. A 'no carb' Atkin's type diet and strict management of all forms of stress (physical, emotional, pollutants, etc) were central to my successful tapering off steroids (following the Pulse and Stretch Protocol) and full recovery. Today, I remain in full remission from Henoch Schonlein Purpura.


An Important Disclaimer
I am not a medical doctor.

My Credentials
My PhD is in Entomology, all my operations have been on insects, and I have a 0% survival rate (all my subjects expired). No wait. That’s not very reassuring.
Ok, take two.
I am intelligent, and a very persistent researcher.
I am good about pulling together information from many sources and putting it down in plain English.
I know what is like to be sick and desperate for a cure. (Read about my disease here).
Best of all, I am an ex-patient! In fact I am training for my first triathlon this year!
I testify that YES it is possible to reactivate ‘dormant’ adrenal glands and wean off long term steroid dependency.

Use it or Lose it: Your Adrenal Glands
If you have been on steroids for many years, the adrenal glands – your body’s own producer of steroids – will likely not be working well. Your adrenals’ duty is to produce cortisol to counter stress in your life, so eating synthetic versions of this hormone (such as prednisone, hydrocortisone, dexamethosone and etc) signals your adrenals to “Stop making cortisol!” because there’s plenty floating around in your blood. Over years taking steroids daily, the adrenals atrophy from not being called on to produce cortisol (‘use it or lose it’). This is why your doctor warns you not to stop taking steroids abruptly. He is absolutely right. If you stop suddenly, your weakened adrenals won’t be able to produce the cortisol needed to keep you alive and you will have an adrenal crisis. Don’t even think about it.

The Key to Reviving Adrenal Glands

The answer is simple. NO STRESS. In this, I don’t mean ‘don’t get stressed out’, or ‘hey no worries matey’. Think about every sort of stress your body could be exposed to in addition to ‘stressing out’. Death of a loved one, a divorce or breakup probably come to mind as stressful, but not getting enough sleep, eating junk foods, smoking, drinking and polluted work/living conditions are also stressful. (Read more on how stress does a number on your adrenals in my upcoming posts). To support adrenal functioning is important for every person, and even more if you are trying to wean off steroid dependency. You will need to reduce the ‘overhead’ stress in your life, big time.

My Personal Regimen
All of what I did is based on my understanding of how the HPA-axis (Hypothalamic-Pituitary-Adrenal axis) works and natural cortisol production. I’ll go in depth in a future post but right now I’m going to lay out my life for you to pick apart!


Sleep. Getting enough sleep and at the right times was very important. I would be in bed by 10 pm, and asleep by 11 pm. I would stay in bed as long as I needed to, at least until 8 am. Total hours of sleep: 10 hours a night.


Diet. I ate no sugar and no carbohydrates. ‘What? No pasta, rice, bread, candy, cakes, pastries…?’ Yep. Nope. Yep. Cortisol is used in metabolizing sugars, and eating sugar and carbs (which end up as sugars) stresses out the adrenals by making them work harder to produce cortisol. Instead, I ate organic protein foods, good fats and veggies. Breakfast would be four Omega-3 DHA eggs scrambled in 2 T of extra virgin organic olive oil. Lunch would be free range organic chicken with a salad (Recipe HERE), and same with dinner. Raw unrefined sea salt made everything taste delicious. I have a gazillion recipes that I will save for future posts!


Living environment. Fortunately I lived right next to a forest and had fresh unpolluted air. This was extremely important. My body didn’t have to deal with the added stress of detoxifying pollutants, while on this regimen to kick-start the adrenals. I also used organic and natural body care and household cleaning products. The regular products contain petrochemicals (artificial fragrances), preservatives and other additives that add to the toxic ‘overhead’ the body is exposed to. Don’t need any of that.


Exercise. Uh oh. Did I say exercise? Don’t worry, it’s not anything hardcore. Actually it would be a bad idea to physically stress yourself too much anyway – stress is a Bad Word at this point. Now wasn’t that just what you wanted to hear? Vigorous daily walks that get the blood flowing did me lots of good during the tapering. Toxins get flushed out by sweating and deep breathing!


That’s it! My personal regimen was pretty straightforward. I did all that while I tapered off the steroids (gradually reduced my dosage). I started the regimen in Nov 2007 and was completely steroid free in 6 months. In the years after, whenever I relapsed due to extra-stressful times, I have used this protocol (and variations of it) to wean off the steroids.


Ever heard of the Pulse and Stretch Protocol? It’s a detailed step-by-step guide on how to wean off the steroids and provides information on how fast to wean, how much to reduce the dose by, and what to expect while tapering. I have slaved over countless drafts of it while all of you waited so patiently and I am so glad to announce that it is finally here! (Read more about the Protocol HERE). 


(Update: Folks who are serious about weaning off steroids, the best and most helpful book I've read is Dr James Wilson's Adrenal Fatigue: The 21st Century Stress Syndrome  (my Review HERE). It would have spared me years of guinea-pigging myself if I woulda just read it first, no kidding! One of the best $10 I ever spent.)

xo Gracie

My Gastronomic (Mis) Adventures

Summary of this post
I talk about the many diets that I tried on my path to wellness, particularly after being diagnosed with an autoimmune disease in 1999, Henoch Schonlein Purpura (HSP). Falling sick changed a lot of what I eat. I believed food could be my medicine and it was possible certain foods also contributed to my illness. Over fourteen years I have tried these diets/therapies: elimination diet, food combining, vegetarian, vegan, raw vegan, Gerson Cancer Therapy, raw meat, Atkins. What worked and what didn't? Read on.

Me and my steroids

Summary of this post
I write about why I was prescribed steroids and side effects of these steroids that I have experienced. Yet, these drugs have only suppressed the symptoms and I still relapse from my autoimmune illness Henoch Schonlein Purpura that afflicts me. I describe what to look out for in a relapse and common triggers. I write about my worst relapse but end on a positive note. (Update 25 July 2012: Read my success story HERE)


Me and my steroids
Believe me, when I say 'my steroids', I do not refer to an acquaintance of which I am fond. I do not like taking these pills into my body. I do not think "Ah, this is going to make me all better".


Steroids are not the cure.

Oh how I hate having to take these little white pills

I have been on steroids for nine years. Prednisone was first prescribed to me in 1999 to 'cure' me of

My disease defines me?

Summary of this post
My personal experience as a Henoch-Schonlein Purpura sufferer, with multiple relapses that involve kidneys, skin, gastrointestinal tract and joints. Developing Multiple Chemical sensitivities and the 9 year on-going (getting there) struggle to wean off steroids. An upbeat, positive overview.


About me! me! me!
I am, by occupation, an entomologist (see what I do for a living at antomologist.blogspot.com). However, my primary duty is not to cure insects as a medical doctor would. Rather, my job is to protect trees from insects that like to eat those trees. Thus sometimes insects die in the line of duty (my line of duty, that is).


I am also a Henoch-Schonlein Purpura (HSP) 'sufferer', and have been so for the past nine years. I was told