A personal testimony of Sarah’s story with the cortisol pump.
When a person’s liver goes bad, they can get on a transplant list for a new organ. When their heart or lungs give out, they have the same possible options. When a diabetic reaches a certain level of instability, they’re offered another alternative, a continuous infusion pump for insulin.
When a person’s adrenal glands stop working, there is no transplant, or medical miracle. For many, it’s a pill 3-5 times a day, and they can get back to life as usual for the most part.
For some of us, though, the oral steroids don’t work. Sometimes it’s a malabsorption issue. Sometimes it’s a rapid metabolism issue. Sometimes it’s gastroparesis (slow stomach processing) or rapid gastric emptying. Sometimes we don’t understand the cause, just that oral steroids keep us alive, but quite unwell.
That was the case for me.
I took oral hydrocortisone, split into 6 daily doses for a total of 25 mg when I was first diagnosed. I saw very little improvement, and was still experiencing low cortisol symptoms regularly. We tried increasing my dose to 35mg daily total, with no improvement.
I was in the ER at least once a month! My favorite Adrenal Disease Support Group was filled with members who had experienced similar lack of improvement with oral steroids. They tried Prednisone, dexamethasone, sometimes specially compounded or extended release hydrocortisone as available in their countries, but each had the same result.
The oral medication just wasn’t working.
I asked my Endocrinologist if we could consider trying subcutaneous dosing of the solumedrol I had on hand for my emergency injection. Though, I’ll be honest, I tried it myself for two weeks prior to my appointment so that I could approach my doctor with evidence that it had changed things for me.
I was lucky my doctor wasn’t upset with me for trying something without talking to him first. I definitely recommend discussing your treatment with your doctor first, for your own safety!
He was, however, impressed that I was actively trying to find a better solution for managing my health.During this appointment, we discussed how much better I felt, even though I was still requiring 6 doses a day. That meant 6 injections a day, including throughout the night. Solumedrol is a longer acting steroid, so I should have been able to dose every 6-8 hours, but for reasons we still don’t know, I needed it every 4 hours.
My doctor recommended that we try oral Prednisone and oral dexamethasone first to be sure that neither would work for me, and over the course of the next few weeks we realized that not only did Prednisone not work for me, but it made me so agitated and angry that the Hulk looked like a sweet kitten…
Dexamethasone was much better for my demeanor, and I felt great for about 6 hours, but it’s supposed to last for 24! Ultimately, we decided that the subcutaneous injections were necessary, and we started the conversation about using a continuous infusion pump so that I could get some sleep!
During the next 5 months, I was still finding myself in the ER for fluids and IV hydrocortisone at least once a month. We were looking into the logistics of a modified infusion pump, as use for cortisol instead of insulin is “off label” and not typically covered by insurance.
Though there are an increasing number of studies about how beneficial continuous hydrocortisone infusion is for the life expectancy and quality of life for AI patients (see links at the end of this post), insurance companies and even most endocrinologists are hesitant to use them. Mine, a top endocrinologist in the country, had never heard of it before.
I gathered research for him, and we talked at length about the benefits and risks. By December, I’d found an extra pump and supplies, and was ready to get started. I had a procedure in the hospital, due to my chronically crappy veins I had a port-a-cath implanted, which resulted in a longer stay. They accidentally punctured my lung!
While in the hospital, they gave me IV boluses of hydrocortisone every 6 hours. They were trying to figure out why my blood pressure was crashing, and why I was not stabilizing.The doctor and I chatted about my need for continuous infusion, and by day 4 in the hospital, he had agreed to put the solucortef directly into the saline bag instead of the every 6 hour bolus.The change was immediate. My blood pressure stabilized, I was able to get up and move around the room again, and by day 6, I was ready to go home.We immediately finished getting the infusion pump set up with my local doctor (who is amazing and was with us through the process and discussion as well).This was six months ago.
Since the beginning of my continuous infusion, I have been to the ER twice. Both times due to norovirus and dehydration, though my cortisol was still very well managed at home.
This new “artificial adrenal gland” was an epic adjustment to my quality of life. I have gone from dozens of ER visits by this time last year, to two total this year. I have been able to teach a small community education class (I can manage about 2-3 hours a couple days a week for about two weeks at time now, where I couldn’t before!) I can go to Walmart and not need the electric wheelchair. I can walk around the block. I’m averaging 4-5 thousand steps a day now, instead of 1-2 thousand.
Am I back to “normal”? Nope. But my new normal looks a hell of a lot better now.
For more research regarding the infusion pump for cortisol check out my collection on Google Drive: Cortisol Pump Research