Honeypea House

Getting a Cortisol pump to manage Addison’s Disease

What do you mean by “pump”?

An insulin pump which has been repurposed for providing continuous cortisol delivery via a little plastic tube (cannula) that goes in to the fat under your skin. For the treatment of Adrenal Insufficiency this is called Continuous Subcutaneous Hydrocortisone Infusion (CSHI). The pump is worn 24/7 only the cannula & infusion set being removed and replaced every 3 days.

I wish this was my stomach

In the image above you can see the white patch attached to the skin, that is the cannula with the dressing holding it in place and keeping everything clean. The tubing coming off is the infusion set and that is attached to a little syringe that sits inside of the pump. The pump is programmed to give you exact amounts of medication (in this case Hydrocortisone) throughout the day.

Why do I want to get a pump?

This is kind of a big question. Researchers are looking in to CSHI as a way of more closely mimicking what your adrenals should do naturally (if they worked!) but until a lot more research is done it isn’t likely to be a common treatment, most people with adrenal insufficiency get on fine with oral medication so this isn’t really necessary for them.
For people that don’t have the best time with oral steroids (for whatever reason) it provides a potential solution to the many symptoms they might be having.
There might be many reasons to get a pump, having digestive problems is certainly one and it is the main reason I am looking at a pump as I do not get the right dose of medication at the right times. I have tried many different doses, timings and different steroids but still have a lot of problems.

Image taken from this article by Professor Hindmarsh

From the picture above you can get the general idea of what a normal cortisol curve should look like (the filled blue area) and what it looks like when on oral replacement therapy. This is just a rough guide though, everyone is different.

One of the problems with using oral steroids is trying to mimic the natural curve of cortisol being produced through the day. When taking oral steroids you get big peaks and troughs, this can provide a host of symptoms you’d rather not have to deal with. Once you add in any kind of absorption or metabolism problems then you’re in for a ride, for me a week of taking the exact same dose at the exact same time can give vastly different results. One day I might be over replaced, jittery, anxious and unable to fall asleep, the next day I might have a really good day with no big problems and the day after I might be severely under dosed and barely conscious, requiring emergency intervention.

My hope is that the pump will provide a more reliable dose, without experiencing the highs and lows I currently have because I am getting the medication in directly, bypassing my digestive tract and I can give very precise amounts at set times or by giving myself an extra dose (known as a bolus).

I am also hopeful that any extra doses that I will need will be absorbed more quickly and prevent me from having a crisis. Anything above and beyond that would be amazing! After being ill for so long it feels like too big of a jump from where I am now to being back in the workplace, being able to travel or go out for dinner with friends and family but at the back of my head I still think about it and hope for it.

How do you get a pump?

Getting a pump isn’t easy. Getting it on the NHS is nearly impossible. If you think the pump is something you want to look in to then talk to your Endocrinologist, you may need to take some research with you in order to aid your discussion. Most likely they will be unable to help you and will direct you to look into private options. There are a number of private consultants in England who are willing to prescribe the pump, you’ll likely need to travel and none of it will be cheap.

There are several consultants in London who will assess your suitability for a pump and start you on a trial. I am seeing Dr Bernard Khoo and Consultant Nurse Philip Yeoh at The London Clinic, they have been incredibly professional and helpful.

How much does this all cost?

The cost of the pump can vary, the one my consultant prefers is £3k and the monthly consumables cost about £150+ but these costs vary from pump to pump. These costs should be VAT exempt but companies may be slightly confused that you are using an insulin pump for another medication.

You will also need to factor in the cost of seeing the consultant and any tests they will need to run, this varies depending on who you see and where.
If you are considering getting a pump then you should discuss costs prior to your appointment to make sure that this would be a financially viable treatment option.

Oddly, the cheapest part of the whole thing is actually the medicine itself… Solu-Cortef which is the injectable version of Hydrocortisone, it is cheaper than the Hydrocortisone tablets and occasionally the NHS will provide this but you would need to check this locally. It is very unlikely that the NHS will fund more of your treatment but you can put in an application for funding.

In my case, I was able to get Solu-Cortef on the NHS, so that’s something. The round trip to London, staying overnight in a hotel and the costs associated with my appointments are… sizeable but hopefully worth it. I paid as much for my breakfast in London as I would for a weeks food shopping at home, the breakfast was pretty rubbish as well!

Pro vs Cons of the pump

This image is from the Inspiration Edit

I think the Pros and Cons are different for everyone. I don’t like stabbing my stomach or being attached to a pump all day but being able to immediately give myself a bolus and feel it get to work very quickly has been fantastic. I can also be more precise in what I am giving, meaning I don’t end up over replacing and having to deal with those symptoms later.

My pump can hold 2ml of fluid, I am prescribed 200mg of Hydrocortisone in 2ml giving a concentration of 100mg/ml. The pumps give out in Units, 100 Units/ml so each Unit is 1mg. This makes any calculations pretty easy and I am able to add up any extra I have taken in a day to a very precise number.

This is something I appreciate as I usually have to take extra to do anything (go food shopping or socialise) but the amount I have had to take previously has been quite varied because I don’t absorb well.

What does the research say?

The research for using the pump is a bit mixed, there are certainly more articles out there but these are ones I have been recommended by my Endocrine team and have stumbled across in my own research. If you are considering the pump then please take the time to research the treatment, costs and if you think you’d be likely to benefit from it.

To anyone who studied at uni or has had to write to a similar standard, I did not provide a Havard Reference list here because nobody is grading this (yet I still want to do it for some perverse reason).

The Addison’s disease self help group and the Congenital adrenal hyperplasia site both have excellent resources worth looking in to as well.

What do I think so far?

I’ve had the pump in for a few days, it is still very early to tell but I have mostly felt much better than I usually would. A trip to London would have almost certainly sent me in to crisis usually but apart from feeling a little tired (which my non-Addisonian partner who brags about having functional adrenal glands did as well) I was ok.

I have had a huge improvement in my sleep, something which has been an ongoing problem for me. Though anytime I turned in my sleep I woke up slightly panicked that I had dislodged or disconnected my pump!

I was started on a deliberately higher dose but I have found that I needed more after 48 hours, I am not too concerned as my nurse has been regularly checking in with me and I was able to consult him about any changes.

I do not like poking myself in the belly, I am a bit of a wuss about it and reflecting back on all the subcutaneous belly injections I did in my years of nursing I feel much more sorry for my patients!

One of the weirdest things that I hadn’t really considered was that my pump weighs about the same as my phone, so when it is in my pocket I think I have my phone on me and carry on with my day. This would have been a problem if I was still taking timed medication every 4 hours but I actually don’t have ANY alarms set at the moment and it is oddly freeing, I don’t think I ever realised how stressed I was about making sure I could take my tablets on time.

I plan to write an update in a few weeks with how I am getting on with the pump so stay tuned!

Leave a Reply

Your email address will not be published. Required fields are marked *