Words of Wisdom
We understand. The Cortisol Pump can seem incredibly overwhelming when you are starting out. It is a completely different method of treating an already complex disease. But we want to let you know that you are not alone in this journey. Below are some words of wisdom from other cortisol pumpers that have walked a similar path as you.
It’s worth the cost and effort.
Do your research. Know what you’re looking at. Cost, time, education. It is not a set and forget or miracle fix for all.
Susie,
1-3 years on the Cortisol Pump
Don’t give up!
I nearly quit a few times at the start because I was emotionally all over the place. Be sure you have a doctor willing to let you make some changes as you try different rates at different times (maybe an agreement not to change the total mgs daily but you’re allowed to change the timeline of distribution).
Don’t give up. Give it a chance. It’s not easy but my quality of life is much better!!!
Don’t give up. Give it a chance. It’s not easy but my quality of life is much better!!!
Kari,
1-3 years on the Cortisol Pump
Being on the Cortisol Pump is really an art.
I have been learning for the past 5 years. It’s been trying, but well worth the effort.
When in doubt change it out. Words to live by. I had so many bad days due to bent cannulas of my infusion sets that I now use only metal needles. You just can’t tell what’s really going on with a plastic needle until you start feeling the effects.
I change whenever I see any signs of redness or bruising around the cannula site. No waiting, no questions asked.
I try to remember to check the pump every morning for temp basal settings, level of meds in reservoir, and appearance of cannula site. Gets my mind set for what I need to do during the day to stay on top of my cortisone needs.
When in doubt change it out. Words to live by. I had so many bad days due to bent cannulas of my infusion sets that I now use only metal needles. You just can’t tell what’s really going on with a plastic needle until you start feeling the effects.
I change whenever I see any signs of redness or bruising around the cannula site. No waiting, no questions asked.
I try to remember to check the pump every morning for temp basal settings, level of meds in reservoir, and appearance of cannula site. Gets my mind set for what I need to do during the day to stay on top of my cortisone needs.
Jeannette,
3-5 years on the Cortisol Pump
I started the Cortisol Pump to stabilize my Addison’s Disease.
After struggling to control my Addison’s for the past few years with a variety of doses, steroids and timings, I started a pump in an effort to stabilize and hopefully improve the management of my Addison’s.
Talk to others with the pump. You won’t get enough information or support from your medical team alone as they won’t be experienced enough with the quirks of using a hydrocortisone pump.
Also, I thought I was having an allergic reaction to the preservatives but it was a common reaction that many users have and with the support of other pump users I have been learning to reduce the symptoms.
Talk to others with the pump. You won’t get enough information or support from your medical team alone as they won’t be experienced enough with the quirks of using a hydrocortisone pump.
Also, I thought I was having an allergic reaction to the preservatives but it was a common reaction that many users have and with the support of other pump users I have been learning to reduce the symptoms.
Chani,
< 6 months on the Cortisol Pump
Don’t do it alone!
Please don’t try to start the pump without an experienced doctor!
Please don’t try to talk an unwilling doctor into starting the pump for you!
Getting a pump is only one small hurdle, get it programmed and adjusted is HUGE, learning how to handle the unforeseen “oopses” (site failures, infection, how to manage illness and other unique situations) is something you’ll be learning forever!
You’re never done perfecting your pump technique.
Don’t try to do this without help, and don’t think you’ll be okay without cortisol testing.
Don’t waste time with a doctor that wont manage this correctly!
You want to be successful– it’s going to get hard! YOU CAN DO HARD THINGS!! It never gets easy, you just get smarter!
Have realistic expectations and hang in there!!
Please don’t try to talk an unwilling doctor into starting the pump for you!
Getting a pump is only one small hurdle, get it programmed and adjusted is HUGE, learning how to handle the unforeseen “oopses” (site failures, infection, how to manage illness and other unique situations) is something you’ll be learning forever!
You’re never done perfecting your pump technique.
Don’t try to do this without help, and don’t think you’ll be okay without cortisol testing.
Don’t waste time with a doctor that wont manage this correctly!
You want to be successful– it’s going to get hard! YOU CAN DO HARD THINGS!! It never gets easy, you just get smarter!
Have realistic expectations and hang in there!!
Michelle,
3-5 years on the Cortisol Pump
I discovered I cannot properly ingest hydrocortisone.
I was diagnosed as SAI three years ago and discovered that I cannot properly ingest hydrocortisone.
My pump, I have called Neville has been purchased, and we cannot imagine life without him – he has transformed my life in less than 2 months.
The battle goes on though – the NHS will not fund the equipment needed to make Neville work and ultimately this will lead to me not being able to use him, however we are fighting on, trying to get national press involvement, and generally harassing MPs, and the local Care commissioning Group.
I am also horribly allergic to the adhesive on the cannulas so I am really struggling with blisters and blood on my poor tummy…just keep swimming…!
My pump, I have called Neville has been purchased, and we cannot imagine life without him – he has transformed my life in less than 2 months.
The battle goes on though – the NHS will not fund the equipment needed to make Neville work and ultimately this will lead to me not being able to use him, however we are fighting on, trying to get national press involvement, and generally harassing MPs, and the local Care commissioning Group.
I am also horribly allergic to the adhesive on the cannulas so I am really struggling with blisters and blood on my poor tummy…just keep swimming…!
Sally,
< 6 months on the Cortisol Pump
Keep a list of symptoms for catching up
Below is just some general pump advice:
1. Always have extra supplies with you. On a daily basis I have two pods, two act-o-vial bottles of 100mg solu-cortef, alcohol pads, band-aids, an IM syringe for an emergency shot— I’m also adding KT tape strips to the list because they make a good makeshift adhesive if my pod starts to come off (bandaids may do in a pinch). If I go out of town, I take 2x the amount of supplies I’d need for every pump change while I’m gone.
2. Keep multiple stashes of oral HC on you (I still have my oral HC on auto-refill). There are very small pill cases or little plastic bags for medication, get 3-4 of them and put one in your wallet, one in your emergency kit, one in your pocket / purse / backpack etc. The sad reality is that we never know when we might end up in a hospital that a) might not allow us to keep our pump and b) might not provide us with HC on a timely basis. And if you run out of pump supplies, oral HC will tide you over until you can do a site change.
3. Playing catch up is so much worse than a possibly unnecessary bolus. At least one Italian study showed that taking an extra (small) dose early can avoid a crisis or a much bigger dose later on.
4. Know your pump’s temp basal increases and use them. They’re better absorbed than bolus bursts. Start them early— if you need extra for exercise for example, start your temp basal an hour or two before you’re hitting the gym.
I talked about this with someone on a pump group; we were discussing catching up when we have a site leak. Usually by the time we catch a leak or a bad site, hours may have passed and we may be very symptomatic. We might not be able to tell how behind we are; brain fog may have set in, or hypoglycemia or low BP.
Some catch up via oral HC (me, currently) and some catch up via subQ injections of solu-cortef. Others might just increase their pump rates and hope it catches them up. Either way, when I have a leak, I’m virtually useless for anywhere from 20-30 min (until oral HC kicks in) to a few hours (even days if it’s bad enough!).
Sit down and think about your usual low cortisol and early crisis symptoms; we know they vary from person to person, so think about your own. When do you know you’re in trouble? Is it the brain fog, dizziness, fainting? Does your BP go low and then high or just stays low? Put them in order to the best of your ability, estimate how much oral HC or subQ SC it would take to catch you up for each of the symptoms. For me it would probably be something like this:
– Air hunger/irritability: 2.5mg
– Nausea/low cortisol headache/low BP: 5mg
– Dizziness/extreme fatigue/mild brain fog: 10mg
– Confusion/intense brain fog/low blood sugar: 15-20mg
– Shaking/unusual sweating/diarrhea: 25-50mg
– Loss of consciousness: 50-100mg
Your “path” to crisis may vary, maybe once in a while I’ll get the nausea before anything else, but this should be a general guideline you and those around you can use to figure out a starting point, as you may not be thinking clearly. Print it out, give copies to your family and keep one in your supplies bag.
1. Always have extra supplies with you. On a daily basis I have two pods, two act-o-vial bottles of 100mg solu-cortef, alcohol pads, band-aids, an IM syringe for an emergency shot— I’m also adding KT tape strips to the list because they make a good makeshift adhesive if my pod starts to come off (bandaids may do in a pinch). If I go out of town, I take 2x the amount of supplies I’d need for every pump change while I’m gone.
2. Keep multiple stashes of oral HC on you (I still have my oral HC on auto-refill). There are very small pill cases or little plastic bags for medication, get 3-4 of them and put one in your wallet, one in your emergency kit, one in your pocket / purse / backpack etc. The sad reality is that we never know when we might end up in a hospital that a) might not allow us to keep our pump and b) might not provide us with HC on a timely basis. And if you run out of pump supplies, oral HC will tide you over until you can do a site change.
3. Playing catch up is so much worse than a possibly unnecessary bolus. At least one Italian study showed that taking an extra (small) dose early can avoid a crisis or a much bigger dose later on.
4. Know your pump’s temp basal increases and use them. They’re better absorbed than bolus bursts. Start them early— if you need extra for exercise for example, start your temp basal an hour or two before you’re hitting the gym.
I talked about this with someone on a pump group; we were discussing catching up when we have a site leak. Usually by the time we catch a leak or a bad site, hours may have passed and we may be very symptomatic. We might not be able to tell how behind we are; brain fog may have set in, or hypoglycemia or low BP.
Some catch up via oral HC (me, currently) and some catch up via subQ injections of solu-cortef. Others might just increase their pump rates and hope it catches them up. Either way, when I have a leak, I’m virtually useless for anywhere from 20-30 min (until oral HC kicks in) to a few hours (even days if it’s bad enough!).
Sit down and think about your usual low cortisol and early crisis symptoms; we know they vary from person to person, so think about your own. When do you know you’re in trouble? Is it the brain fog, dizziness, fainting? Does your BP go low and then high or just stays low? Put them in order to the best of your ability, estimate how much oral HC or subQ SC it would take to catch you up for each of the symptoms. For me it would probably be something like this:
– Air hunger/irritability: 2.5mg
– Nausea/low cortisol headache/low BP: 5mg
– Dizziness/extreme fatigue/mild brain fog: 10mg
– Confusion/intense brain fog/low blood sugar: 15-20mg
– Shaking/unusual sweating/diarrhea: 25-50mg
– Loss of consciousness: 50-100mg
Your “path” to crisis may vary, maybe once in a while I’ll get the nausea before anything else, but this should be a general guideline you and those around you can use to figure out a starting point, as you may not be thinking clearly. Print it out, give copies to your family and keep one in your supplies bag.
Fey,
6 mo. – 1 year on the Cortisol Pump
The pump is not an overnight solution.
My endo started me on the pump about 3 years ago because oral meds just weren’t cutting it anymore. I was given the impression that starting the pump would make me instantly feel better. It didn’t.
I wish doctors would tell their patients that it takes time. I guess it depends on how sick you are when you start as to how long it will take to adjust.
Some advice I would give is – one, the rates your doctor gives are not set in stone. You know your body better than anyone and know how to read the clues it gives you to know when something needs to be adjusted. It probably took me 6 months to feel like my rates were right. I’ve been on the pump for 3 years and I still have to tweak my numbers on occasion. There is no magic number.
Second, I have a love/hate relationship with my pump. I love the convenience of only worrying about medicine every 3 days instead of having alarms set on my phone to remind me to take my oral meds. Sometimes I do get tired of constantly being attached to my pump, especially when I want to wear a dress and I have to figure out where to put my pump. (Hint: If you have a larger bust you can put the pump in between your boobs in your bra and no one knows its there.)
Third, don’t be afraid to ask questions. There isn’t such a thing as asking a stupid question. There were things I thought were only happening to me but when I finally asked other pumpers I found out I wasn’t alone.
Overall, I am happy to be on the pump. There are days that I wish I could put it in a drawer and be free of it but I remind myself of what life was like before I started pumping.
I wish doctors would tell their patients that it takes time. I guess it depends on how sick you are when you start as to how long it will take to adjust.
Some advice I would give is – one, the rates your doctor gives are not set in stone. You know your body better than anyone and know how to read the clues it gives you to know when something needs to be adjusted. It probably took me 6 months to feel like my rates were right. I’ve been on the pump for 3 years and I still have to tweak my numbers on occasion. There is no magic number.
Second, I have a love/hate relationship with my pump. I love the convenience of only worrying about medicine every 3 days instead of having alarms set on my phone to remind me to take my oral meds. Sometimes I do get tired of constantly being attached to my pump, especially when I want to wear a dress and I have to figure out where to put my pump. (Hint: If you have a larger bust you can put the pump in between your boobs in your bra and no one knows its there.)
Third, don’t be afraid to ask questions. There isn’t such a thing as asking a stupid question. There were things I thought were only happening to me but when I finally asked other pumpers I found out I wasn’t alone.
Overall, I am happy to be on the pump. There are days that I wish I could put it in a drawer and be free of it but I remind myself of what life was like before I started pumping.
Jennifer,
1-3 years on the Cortisol Pump
Try Different Insets
My daughter Lilly had a rough start on the pump. It ended up the first two types of insets we tried didn’t work well for her. The third type did the trick! We had success.
If you are struggling, try a different inset.
I also wish we had more training on the pump from a trainer. I think that would have saved us a lot of heartache.
Hang in there! My girl is doing great and couldn’t imagine going back to pills.
If you are struggling, try a different inset.
I also wish we had more training on the pump from a trainer. I think that would have saved us a lot of heartache.
Hang in there! My girl is doing great and couldn’t imagine going back to pills.
Debbie,
6 mo. – 1 year on the Cortisol Pump
Submit Your Own
Are you on the cortisol pump? Do you have a piece of advice that you would like to share to other pumpers? Please fill out the form below, and we may feature your words of wisdom on this page!