Continuous Subcutaneous Hydrocortisone Infusion – a patient experience.
by Desley Rolph
The below information is purely my personal experience and thoughts, as a patient, relating to using Continuous Subcutaneous Hydrocortisone Infusion, for treatment of Adrenal Insufficiency, using an insulin pump. (It is not Medically researched information)
The insulin pump was originally designed for diabetics, who are able to receive government and insurance rebates. Many arguments for using the insulin pump for off label use in my opinion fall short of good argument against use of the pump for hydrocortisone use. Whether an AI patient uses oral medication, subcutaneous injection or pump therapy, they have to remain just as vigilant to their symptoms for any type of delivery and understand the need for stress dosing.
As a patient who is both an insulin dependent diabetic and an AI patient, I have first used the pump for delivery of insulin. Therefore I feel I can compare my experiences both from the diabetic and AI point of view. I opted to trial the pump for hydrocortisone delivery as cortisol day curve tests revealed I was a fast metaboliser. My experience resulted in many of my AI symptoms disappearing, eg diarrhoea, tachycardia, morning nausea, and debilitating fatigue, resulting in a better quality of life with more energy enabling me to achieve more than previously. I would say I now feel 80% recovered as opposed to functioning at 30% previously. I have continued to use the pump for hydrocortisone and went back to injecting insulin for treatment of my diabetes. Desley Rolph
• Continuous therapy
• Able to sleep and not worry about missing dose
• Able to drop to lower doses because body is using medication better
• The technology allows for setting updosing at higher amounts by the percentage method, and likewise makes weaning easier to work out using the percentage method.
• While weaning, the dosing can be set to very small amounts if needed. Eg. 1mg, which is difficult to do using oral medication.
• Being able to bolus and receive medication more quickly than updosing with tablets
• If nauseous or having diarrhoea, guarantee of receiving medication is ensured.
• The pump can more closely match the circadian rhythm than any other current form of treatment
• Patients are able to receive very small doses overnight while sleeping
• Many patients who do not do well on oral medication, report doing much better on the pump.
• More expensive treatment when compared with medication.
• Adherence to sterile procedures when changing tubing, cannulas, and reservoirs.
• Acceptance of wearing an attached device and learning how to use it to ensure proper use.
• Irritated sites
• Bent cannula
• Unable to measure cortisol in the same way a diabetic can measure their blood sugars if feeling unwell.
• User Error
• Claims made that using the pump is a constant reminder of the illness
• More expensive treatment when compared with medication – more expensive also for a diabetic, yet they get rebates.
• Adherence to sterile procedures when changing tubing, cannulas, and reservoirs. – A diabetic has to adhere to the same sterile procedures.
• Irritated sites – diabetics get irritation from the sites also.
• Bent cannula – this would result in non-delivery of medication and the patient would start to feel low cortisol symptoms. The same can happen if a patient forgets to take their medication or sleeps through a dose. The patient would need to be aware of symptoms in both situations and updose accordingly. A bent cannula can also happen with insulin delivered therapy.
• Unable to measure cortisol in the same way a diabetic can measure their blood sugars if feeling unwell – An AI patient who uses the pump has to be just as vigilant to recognise low cortisol symptoms in the same way as they would have to if they were taking oral medication. With both AI and diabetes, the patient needs to treat low cortisol/diabetic symptoms by adjusting their dosing accordingly.
• User Error – diabetics can make mistakes with the pump also and yet the pump is used and accepted re insurance/rebate for this condition. Also, it is just as easy to forget to take a tablet as it is to forget to press the correct button on the pump.
• Malfunction – diabetic use of pump can also result in malfunction in the same way.
• Claims made that using the pump is a constant reminder of the illness – this is a ridiculous notion, given that a person who has absorption or fast metabolising issues have to dose more frequently with alarms set on their mobile phones. This is just as much a constant reminder of the illness as is the pump. A diabetic patient has a choice between injecting up to several times a day or using the pump. It is in no way any different for an AI patient than it is for a diabetic patient to be reminded of their illness.
Here’s a recent study from JCEM comparing oral glucocorticoid therapy with delivery by pump. Hopefully this will help pave the way to better access for patients. You can read the full article by clicking on pdf.
Circadian rhythm, insulin sensitivity helped with cortisol pump