The Cortisol pump has the potential to dramatically improve the lives of patients with adrenal insufficiency. All current research studies indicate improvements in patient quality of life. With results like that, the pump seems like magic, right?
My own experience with the cortisol pump has been dramatic and highly successful. Positive patient testimonials such as mine, make others suffering with poor quality of life think the pump is the solution to all of their woes.
While I have raved about the merits of the pump, I’ve also been honest about how difficult it has been, and that pumping alone hasn’t fixed everything, nor did any of these changes come quickly.
I am not writing this to discourage anyone from using the cortisol pump. Personally, I love it, and I want this treatment to be an option for every adrenal insufficient patient. However, I don’t want to mislead anyone. I want patients to have a realistic idea of what pumping entails so they can make an educated decision about their treatment.
5 Reasons NOT to Get a Cortisol Pump!
1. You feel great on steroid pills.
This was never the case for me, and I don’t come across a whole lot of people that do, but there really are some patients out there that get by just fine on oral steroids. For these patients, it would not be worth the time and effort to switch to a pump and it would not be worth the extra work and expense to maintain it.
2. You are not a self advocate.
This is still an uncommon and relatively new treatment, (cortisol pumps have been in use about 13 years.) It’s likely you’ll have to search for a doctor that supports this treatment, and even when you find one, there is a good chance they will have very little to no experience with cortisol pumping. If you cannot gather research yourself, present your case to the doctor, be prepared to be rejected, and be willing to try again…it’s not going to work out. Even when you start the pump, you will have better success if you can work along with the doctor to keep track of your own symptoms and adjust your own delivery rates accordingly. You will never be able to just sit back and let someone else do this for you. If you’re not a persistent self-advocate, this is not the treatment for you.
3. Pills are too much hassle.
Yes, pills are a huge hassle. It’s terribly inconvenient to take pills 3-8 times daily. Yes, it’s annoying having alarms going off all the time for meds, and yes it totally sucks having to wake up in the middle of the night for doses.
You would think the pump is more convenient with it’s preset schedule and continuous delivery, and most of the time it is. However, the pump is not something you just set and forget. You will have to use syringes to mix Solu-cortef and refill your cartriges. You will have to change out your inset at least every 3 days following strict sanitation procedures. True, that’s better than taking pills every few hours every single day of your life, but there will be times your pump maintenance doesn’t go as planned. You might get a low units alarm at night when you just want to sleep. You might find yourself with a failed infusion set when you’re out in public. While these aren’t huge problems, it will take a bit more effort to fix than just swallowing another pill. My point is, if pump therapy seems appealing to you because of the convenience- you will be disappointed. Pumping ain’t easy! It’s totally doable, just know what you’re getting into before taking the plunge!
4. You’re afraid of needles.
Pump therapy involves inserting a Cannula into your skin with a small needle. It’s nearly painless when done correctly, but if this sounds like more than you can handle, then the pump isn’t for you. You should also know that the pump is ABSOLUTELY NOT AN ALTERNATIVE TO YOUR EMERGENCY INJECTION! You cannot rely on your pump to infuse 100mgs or more at a time. This will almost assuredly cause your infusion site to fail, which could make an emergency situation even worse. Even if you could infuse all 100mgs without it leaking, subcutaneous absorbtion will be slower than intramuscular. Also, there’s a chance you won’t even have 100mgs in your cartridge to deliver. So don’t think getting a pump will mean you never need an emergency injection.
5. You don’t want to talk to your insurance company.
Even if you’re willing to pay out of pocket for a pump or buy one second hand, you are going to have to contact your insurance company at some point. While the cost of a infusion pump brand new is thousands of dollars, the monthly Solu-Cortef can be the most costly item depending on your insurance coverage. You’ll want to know your DME benefits, be familiar with your prescription plan’s formulary list, and most importantly don’t be afraid to call and ask questions! Ask ask ask! Find out exactly what they can and can’t do, find out how to have an exception made, or how to appeal a decision. Don’t expect your insurance company to get everything right and work it all out for you, but at the same time, don’t just assume they won’t help at all. You don’t know until you try!
I encourage anyone with adrenal insufficiency, suffering with poor quality of life, to look into subcutaneous hydrocortisone infusion therapy. It has really changed my life for the better, but it has been an indescribable amount of work. Even when you start on the cortisol pump, the battle isn’t over. You will have to learn strategies to manage it…by yourself. You will have to ensure you always have a steady supply of Solu-Cortef and pump supplies, even when your insurance and financial situations change. You’ll have to be prepared to deal with unexpected maintenance and mishaps, handle them the best you can, and just keep on going. It helps to be strong willed, assertive, and stubborn. You will have to be resourceful and adaptive. There are times even the strongest, most resilient pumpers I know will get frustrated and want to quit, but ultimately, all of the work is worth it. We take a deep breath, pick ourselves up and keep pumping.
11 thoughts on “5 Reasons NOT to Get a Cortisol Pump”
Another big reason is infections. my biggest issue with the pump is infections at the site which does happen from time to time and when it does it’s not good. I agree there are reasons not to and reasons to and I’m glad I got one but it took years of advocating and working hard to get one. I often get pain when I insert my needle. I don’t like that part but for me it does the job far better than the pills which did not work well for me 🙂
Compared to all the draw backs with the pills, the pump is definitely the best option for me. Infections are rare, but they do happen and they can never be ignored. I’ve had phases where sites keep leaking, burning or bruising, and that can be very discouraging…but then I’ll go a long time where everything works great and I have no issues. There will always be good and bad days with any treatment. For me personally, the good really overshadows the bad. I was just so unwell on the pills, and I couldn’t keep living that way.
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Great post about cortisol pumping. Gives a good picture. I honestly have bern thinking that it would solve alot. But deeling with all the things you have written It sounds just about as inconvinient as pills. And after 10 years of pills you kind of have the hang of that. So maybe pumping isnt the key, the soloution to all. Thank you for this post! Got me thinking a lot. All the best.
Emelie from Sweden with Autoimmune Addisons disease
It really depends on what you’re looking for. If you want the pump because it’s easy, it’s really no easier than pills.
If you want it because your health is declining on pills, then it is worth the effort.
[…] Here is a link to a wonderful post about 5 reasons NOT to get a cortisol pump by a lovely woman who has adrenal insufficiency as is on the pump. Reasons NOT to Get a Cortisol Pump […]
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So how hard is it to get rid of the infections when you get one and how dangerous are they and do they also send you into a crisis and how much do they cost if your insurance does not pay and can you finally work a job or exercise with something like this because I haven’t been living for years I spend all my time in the home in my bedroom basically in my bed
It’s not very hard to get rid of a site infection, and they aren’t all that dangerous as long as you catch it early. If you try to ignore an infected site for several days, it will more than likely get worse and can become dangerous, but that is very rare and would take considerable neglect to let it get that bad. Typically if I can catch it when it’s very small I can treat it at home with topical antibiotic and a heating pad. Sometimes if it continues to progress I’ll have to go to the doctor for an oral antibiotic and that clears it right up. I’ve never had to go to the emergency room for an infection.
An infected site could in theory provoke an adrenal crisis as could any kind of infection, however you would have to really neglect the infection and your dosing requirements for it to get that bad. Site infections are typically not severe.
The pump can be very costly if you have no insurance assistance. A brand new pump could cost you a few thousand dollars. You can expect to spend at least $200 per month on infusion sets and reservoirs if you’re buying directly from the manufacturer with no insurance. However your Solu-Cortef can easily become the biggest expense if you are paying the full cost. Pumps, infusion sites, and reservoirs can be purchased second hand if need be, but no so with Solu-Cortef.
Many cortisol Pumpers do work full-time jobs. I do not because I’m dealing with cancer at the moment, so I’m not a typical case. However I do exercise. Not as vigorously as a normal person, but I take walks often, I can do some yoga, ride my bike when the weather is nice, and I can lift light weights. Some cortisol Pumpers are able to run marathons, but it takes a lot of training like with anything else.
[…] faced from my endocrinologists and what I wish I’d know at the time. For contrast, read here about 5 reasons a cortisol pump user gives for not getting a […]
[…] Here is a link to a wonderful post about 5 reasons NOT to get a cortisol pump by a lovely woman who has adrenal insufficiency and is on the pump. Reasons NOT to Get a Cortisol Pump […]
[…] can see why the cortisol pump might not be right for everyone, but I truly feel that everyone with adrenal insufficiency should have this option available. Some […]
[…] Gosh, talk about calling yourself out! This doctor clearly had not done his homework on cortisol pumping. He’d not read blogs by cortisol pumpers like Michelle who provide reasons not to get a cortisol pump. […]