A patient’s guide to steroids

With Addison’s disease, the treatment is life-long replacement steroids. I have been on this treatment for almost two years. I wish I’d known all this information long ago. I am sharing it so that others may find some answers I searched so hard to find.

Let me first put out the disclaimer that I am NOT  A DOCTOR. I have had medical training but am not medically licensed to diagnose or treat any condition. I am simply an Addison’s/MSK disease patient determined to share the helpful information I’ve learned over the years since my diagnosis.

I have kept screenshots of data I have collected and will post them along with explanations.

Screenshot_20170404-200918

Here are the different types of replacement steroids. Basically this chart explains how each steroid reacts in the body.  Cortisone, Hydrocortisone, Prednisone, Prednisolone and Methylprednisone have mineral properties where the others do not.

QUICK TERMS TO UNDERSTAND-

Mineralocorticoids are corticosteroids that influence salt and water balances (electrolyte balance and fluid balance).

Glucocorticoid- any of a group of corticosteroids (e.g., hydrocortisone) that are involved in the metabolism of carbohydrates, proteins, and fats and have anti-inflammatory activity.

This basically means that these medications aid in regulating other chemicals in the body (electrolytes etc). I personally have been on all of these steroids. I did not respond well to anything other than brand name Cortef (cortisol). I believe this is because I personally need the mineral properties due to my aldosterone levels. Some people do very well on the other steroids….I did not.

Which bring us to the next point….

Aldosterone- a corticosteroid hormone that stimulates absorption of sodium by the kidneys and so regulates water and salt balance.

Fludrocortisone, sold under the brand name Florinef among others, is a corticosteroid used to treat adrenogenital syndrome, postural hypotension, and adrenal insufficiency. Fludrocortisone is mostly a mineralocorticoid; however, also has glucocorticoid effects.

Not everyone with Adrenal Insuffiency takes this medication. I was not on this until a year after I was diagnosed with Addison’s disease. I was placed on it after I began passing out and having electrolyte issues. Since I also have a kidney disease, I believe this is a direct result of that. I have a theory regarding renin levels, which I hope to one day research and prove.

Screenshot_20170317-193144

Renin- an enzyme secreted by and stored in the kidneys that promotes the production of the protein angiotensin.

(Link to a study regarding this Renin Study)

I believe if we could somehow understand the role of renin in the adrenal/kidney function maybe we could correct this issue. But for now, the treatment is Fludrocortisone.

I personally hate this medication. I am thankful for it, but it made me gain weight. I was on cortef for over a year and maintained the same weight. A week on the fludrocoritsone….I gained weight.  Yes, I know you are thinking oh maybe you’re just not on the right dose. Let me tell you I am. I heavily track my blood pressure, pulse, o2 and all that jazz. Whenever I drop the dose I get severe issues (Passing out, shakiness, migraine, etc). I am on the right dose, but for whatever reason my body gained weight on it. I would rather be alive and fat than skinny and six feet under. Weight sometimes is not a direct result of diet or exercise.

Diet on steroids is another tricky thing I wish I’d understood. I personally feel the best on the Ketogenic Diet. Below is the explanation as to why I believe this is the case.

Screenshot_20170227-102009

I eat as strict as possible.  No gluten, no dairy! Still overweight. This happens with steroids. The moon face…is real!

Screenshot_20170109-202956~2

Another thing I wish I had learned about steroids is how difficult is to wean down on them. After my last surgery, I had a major relapse and my steroid had to be doubled. Yep, doubled.

It was what my body needed at the time and I fully believe I would not be alive right now had I not chosen to take the high dose. That being said, it has taken me months to get down off the high steroid dose. I’m still not where I’d like to be.

It is a lot easier to go up on it than it is to go down.

BUT!!!! Too much one day won’t kill you, too little will. Always stress dose if you need to.

You just have to know and trust your body. Listen to your symptoms. Understand how you feel. Watch your vital signs.

Weaning is one of the worst experiences of my life. Here is a link to my article on how to wean as easily as possible.How to Wean Steroids

Here is another thing I wish I’d discovered.

1sod.jpg

Whenever I feel shaky and weird…I take one of these. DO NOT DO THIS WITHOUT CONSULTING YOUR DOCTOR. This is an electrolyte replacement tablet. I cannot drink gatorade or anything due to my kidney disorder so this helps me whenever I feel like I am going to pass out.

Fludrocortisone directly affects the sodium/potassium balance in your body. Be careful with this. I still struggle to regulate it myself.

ALSO, with Addison’s/MSK my body never regulates chemicals right.

Estrogen and cortisol impact one another. (Sources for theory here Dr. Sara Gottfreid- Estrogen/Cortisol/Thyroid   )  and   LIPESE Article )

(Combined use of synthetic progestogens may therefore enhance estrogen effects on body sodium and blood pressure.)

I have always had to stress dose during the menstrual cycle. Cortisol for some reason gets antagonized by estrogen. Read above articles for more explanation. Basically I found that during my “time” I struggled worse with energy, strength, electrolyte balance and pain. Extra stress means you need extra cortisol, therefore I have to stress dose.  My solution to this was taking progesterone. HELPED! Oh it helped…

But, progesterone directly affects aldosterone! Endogenous progesterone is a mineralocorticoid receptor antagonist.

Who KNEW!?

Agonistic and antagonistic properties of progesterone

Effects of estrogens and progestogens on the renin-aldosterone system and blood pressure.

(Oh look it all ties back to renin levels too… So help me guys I am going to FIGURE THIS OUT. )

ANYWAYS,, another thing……

I was having severe muscle aches and weakness. Turns out my Vit D and Potassium were beyond deficient.

The ONLY kind of supplement that brought my levels up was the liquid version. (Link here Vit D )

Anyways, this is just some things I wish I’d known earlier. Hope it helps someone else.

 

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5 thoughts on “A patient’s guide to steroids

  1. Jill April 6, 2017 / 11:27 pm

    Have you found a liquid Potassium that works well?

    Like

    • Winslow E. Dixon April 7, 2017 / 8:56 pm

      I would caution you to only take potassium supplementation that is prescribed by your doctor (and only after getting a CBC (complete blood count) lab result.) Potassium directly affects cardiac and muscle function, so I don’t recommend over the counter supplementation, as too much can cause serious issues. Your doctor can determine the best dose for you based on blood work. There are both liquid and pill forms they can prescribe for you. Best wishes in your health journey!

      Like

  2. iamjustasecretary July 4, 2017 / 9:45 am

    Glad to read about your experience in the sense that I don’t feel that alone anymore. Keeping track/ titrating meds is so tricky and frustrating even with medical background. I’m happy for you though, with your determination to research on the best care for you. 🙂

    Like

  3. John Gamble January 29, 2018 / 7:04 am

    Florinef did not work for my wife, but midodrine and electrolytes work very well along with eating more salt.

    Like

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