Saturday, May 23, 2015

The Cortisol Pump

Dear readers, I now feel comfortable disclosing something to y'all. I am using a Medtronic MiniMed Paradigm 715 pump to infuse solu-cortef as my main treatment for my Adrenal Insufficiency. I have been on this treatment for over a year.

Everything in my life is colorful. Even my pump.
I could not publicly announce it when I first started treatment because the door opened up in an unorthodox and unexpected way. Also, please note that the use of a pump for Adrenal Insufficiency is very contentious within the medical community. It definitely can make some doctors nervous.

Most people see this and instantly assume "Diabetes: Insulin."
I thus label my pump as "NOT DIABETIC" and "NOT INSULIN."

What the Cortisol Pump Is:

  • An alternative way to deliver our life saving cortisol steroids.
The pump is a very accurate medicine delivery system using an alternate deliver method for a known and approved Adrenal Insufficiency treatment (solu-cortef) in order to create cortisol levels similar to that of a person with a normally functioning endocrine system.

What the Cortisol Pump Is NOT:

  • A plug and play quick fix magical solution.
The pump is a very individualized treatment plan. It takes each patient a different amount of time to find their ideal dose and rates. Things are further complicated when dealing with multiple illnesses and diseases. I say this not to discourage those seeking this treatment. I just want to caution them. The pump takes work.

Resources/References:

The doctor that pioneered this method is Professor Peter Hindmarsh of Great Ormond Street Hospital in the UK. He has done amazing work for improving the quality of life and treatment for those living with Adrenal Insufficiency. A great wealth of resources can be found at his website here. Below are three links from Great Ormond Street Hospital that are useful:

Here are a few case studies:

Advice for those with Adrenal Insufficiency Wanting the Pump:

A cortisol pump is a very individualized treatment that must take many factors into account. It also requires a completely new mindset. Did this treatment drastically improve my quality of life? Yes. Does it take a large amount of work? Yes.

After using this treatment for over a year, it is my personal believe that the pump will never be the mainstream treatment for Adrenal Insufficiency. BUT there are many who can benefit from it. If you want one, the best thing for you to do is research. Do your homework. Learn the good and the bad. Present a case to your current doctor. See if there is an open door.

The data is there. This treatment works. But you must be your own advocate for it.

My medical alert bracelet has been updated.
I blacked out my last name and DOB.
You can purchase one from www.Roadid.com

52 comments:

  1. Hi Amber! Just wanted to check about sharing this in the ADSG. A few more are getting the pump and it's always a topic of discussion for AI folks, partly thanks to you. This would be great to share if it's okay. We miss you there! xo

    ReplyDelete
    Replies
    1. Feel free to share, and thanks for checking! :)

      I created this as a quick reference to help as many people as possible. May we continue to work and learn to improve the quality of life for all of us living with Adrenal Insufficiency.

      Delete
    2. Hi Amber!

      Your blog is getting reposted many places on FB. It was good to run into you in this capacity. I'm so glad you are on the pump, that it is working, and that you are sharing your story with others. I think about you and wonder how things are going. Miss you much. My best to you and family.

      Delete
    3. Hi Gina,

      Nice to hear from you!

      Feel free to continue to follow my blog, I share most of my adventures in life here. :)

      ~ Amber

      Delete
    4. Have u ever considered writing Whitehouse.. president Kennedy took 60 pills a day for Addison disease. Maybe the Kennedy foundation would like to be the educator of or disease and bring it to the forefront ointment his honor. There r certainly enough Kennedys out there to bring attention and put a face on our disease and hoe ignorant the medical society is to this disease. It seems if u r rich and u or ur daughter or son gets it no one fights or donates. It is my personal belief that even though this disease they say is rare, I feel people die from it before we can save them and find out after there death what they died from. People die because the Dr don't know what dose they give them. I also wonder how much allergies play in this. I just found out I have asthma allergy related and chronic cough which is worse in winter or fall, maybe steroids. I do it myself if I wasn't so sick right now

      Delete
    5. Hi Pana,

      I know of several that have reached out to the Kennedy foundation to see if they are interested in research / education.

      They aren't.

      It's incredibly frustrating, as we do believe that the Kennedy foundation could do so much GOOD for our disease cause, but they do not want that to be the focus of his legacy.

      ~ Amber

      Delete
  2. Thanks for sharing this - I have so many questions -- you answered a lot of them.

    ReplyDelete
    Replies
    1. Happy to help! If you have any more specific questions that you would like answered, feel free to message them to my facebook page ( www.facebook.com/clearlyaliveart )

      I'll collect them and potentially do a Q&A blog post in the future :)

      Delete
  3. Hi Amber - just found your blog. My son (age three) has Panhypopituitarism (so he has adrenal insufficiency). I am looking forward to reading about your life and how you manage your AI while thriving as a professional and athletic person. Thanks so much for sharing your story. - Heather in Manhattan, KS

    ReplyDelete
  4. Just a question for you. How often and when does the pump release the drug into your system? I am a little confused by this.
    Thanks.............mo

    ReplyDelete
    Replies
    1. Hi Mo,

      The pump is continuously releasing cortisol into my system so 24/7. The rates are titrated to different levels depending on the time of day and are different for each individual.

      Let me know if I can answer any other questions :)

      Delete
  5. First off how do I get the pump? Also, do you use it every day or do you take oral if you are going hiking, swimming, etc.? Does insurance cover the medication?

    ReplyDelete
    Replies
    1. Everyone's path to the pump is slightly different, so the trick is to find the open door that works for you. The pump that I am using I purchased from the Malaysian branch of Medtronics. I'm pretty positive very few people will follow my exact path :)

      And I use the pump pretty much every day. There have been times that I disconnect. When I do, I just cover myself with oral meds. I've gone hiking with it before, but I do have to take it off to go swimming because my particular pump is not waterproof. However, there are waterproof pumps out there.

      As for insurance coverage, it totally depends on what insurance you have. The pump is significantly more expensive than oral meds. Cash pay for a set change runs about $20, and we're expected to change that out every 2-3 days. However, long term, I do expect this method of treatment to save us money as the number of hospital stays and ER trips is reduced.

      I hope my answers help! I apologize in my delayed response.

      Delete
  6. Looking for more info on the pump. My daughter uses the Omnipod for her type 1 diabetes and I think it would work for me in treating addison's. Looking for any local washington DC metro area, PA, VA, MD, with docs that are up on it? Mine is open but cautious because it is not the standard. Or any US studies? I haven't found much on clinicaltrials.gov but let me know if anyone has info. Any info is appreciated.

    ReplyDelete
    Replies
    1. Hi Michelle,

      In terms of US studies, they are currently mostly limited to CAH and are ongoing now (Example: https://clinicaltrials.gov/ct2/show/NCT01859312?term=merke&rank=2 )

      If your doctor is willing to work with you, and learn along the way, that might be your open door. Professor Hindmarsh has a large amount of information available on his website, which I have linked above.

      Good luck! It's a long process, but it does work well with addison's treatment.

      ~ amber

      Delete
    2. Amber, Thank you so much for the website and the subject matter. I've been using a Medtronic device for CAH since August 2015-going really well..also created a website cause my doctor was a huge supporter of it with but got a lot of questions. www.cortisolpump.com ...in any event, I got approved for an OmniPod that I should get next week, so stoked about the outcomes for that as well. In regards to Michelle's question, consider reaching out to Deborah Merke, MD at NIH as she has run a couple of studies and has been the PI-and has good date for setting basal rates initially. Alternately, Ashwini Mallappa, MD also has good baseline data to get started and help your doctor write the certificate of medical necessity.

      Delete
    3. Hi Raj,

      Thank you so much for sharing your site! I've heard good things about the OminPod, many people like the no tubing. I've upgraded my pump now to the 630G. I LOVE the waterproof aspect!

      ~ Amber

      Delete
  7. Hi Amber... how has the pump been for you with nighttime/sleeping hours, and then also morning waking hours? I never sleep through the night, either wake in need of steroids or because of low blood glucose... and my morning hours are awful. I wake feeling run over, and then lay in bed for few hours, waiting for meds to "kick in". I'm rarely up before 11. Wondering if the pump interferes at all with sleep? and probably has been a good thing for morning as it's released into your blood while sleeping, and then wakes you up. Would be nice to bypass all of the horrific reminders everyday of this disease... thanks so much for sharing all of this. :)

    ReplyDelete
    Replies
    1. Hi Michele,

      The pump has been AMAZING in terms of nighttime/sleeping hours and also with waking hours for me. But it is also only as good as the programmed rates.

      Your body requires a certain amount of cortisol overnight that will allow you to sleep and sleep well. Too much, and you cannot sleep. Too little, and you cannot sleep. I've experienced both situations on oral pills and the pump.

      As my medicine rates on my pump approach the natural circadian rhythm of cortisol, I can fall asleep naturally at an appropriate time, and then wake up feeling refreshed. It's quite the improvement.

      It also sounds like you have less than ideal overnight steroid coverage on your current regiment. Could you discuss with your doctor the possibility of adding in a small dose of a longer acting steroid such as dexamethasone or prednisone before bed to prevent the low glucose and the dreaded waiting for the meds to kick in? Before I was placed on the pump, I would take 0.25 mg of dex at night to prevent the issues you described.

      Let me know if you have any other questions! :)

      ~ amber

      Delete
    2. Amber, thanks so much for your quick and very thorough response. You are "Clearly Alive"! I do take 1.25 mg prednisone at night and still wake by 3 or 4 a.m with all kinds of symptoms. Keep in mind, I have extreme Reactive Hypoglycemia (borderline Insulin Resistance) and so sugars drop fairly quickly. Unfortunately, I think I'm headed for diabetes. I'm also in Perimenopause so have all of those symptoms to contend with as well. :( Hormone fluctuations and deficiencies without adrenal support to back up for declining sex hormones... is very challenging & unpredictable. So this also interferes with sleep. Sleep has become my biggest demon. I haven't slept more than 3 or 4 hours straight in a few years. I'm in bed for about 12 hours every night because I wake so frequently and have to manage symptoms with meds, fluids, snacks, etc. I'm 44 years old and haven't worked in 3 years. Very hard on one's mental state, thus I also deal with severe bouts of depression. Anyway, my question is, did the dexamethasone ever cause you problems at night with getting to sleep? I remember taking dexamethasone many years ago for a short period of time and I felt "wired" and headachy. Just didn't feel right, so I went back to HC & pred. Even on prednisone at night, I often have difficulty getting to sleep - feel wide awake at midnight, but then I still wake a few hours later. Ohhhh, soooo frustrating. I do think things will be easier for me when my periods stop and if I get better control over my sugars. I can fall into the trap of giving into cravings for too many sweets and carbs because they initially make me feel better, but then I pay. Such a journey...

      Thanks again for your insight.. very grateful I stumbled across your blog. :)

      Sincerely,
      Mollie (oh, Michele is my mom.. that's a whole other story)

      Delete
    3. Hi Mollie,

      I had to experiment with dexamethasone before I figured out my magical dose. 0.5 mg at night left me wired and irritable. 0.25 mg at night mixed with HC throughout the day seemed to enable me to sleep and wake up somewhat refreshed. But the best sleep I've experienced is on the pump WHEN my rates are correct. I cannot emphasize that point enough. The pump is a wonderful tool, but the programmed medicine must be tailored to your individual body.

      And it definitely does sound like quite the journey! What time are you taking that 1.25 mg of pred?

      ~ amber

      Delete
    4. Thank you for your reply, Amber. I take my evening dose of prednisone between 6:30 & 8:00p.m. The pump does sound like a wonderful tool, however, it might not be as useful for me as I also have hypoglycemia and am in Perimenopause... both of which cause frequent waking during the night. It would be so nice if the medical community would come out with a device for cortisol like a glucometer reads your sugar. Or a pump that reads cortisol levels throughout the day & night, and lets you know when you're low or high. As we all know, it's no good to have your body bathed in excessive levels of cortisol, or to be running on the low end either. And sometimes I feel that I may be treating "something else" (gut inflammation, low estrogen, etc) by just taking more cortisol. I think many fall into this trap who are juggling multiple illnesses, along with AI or Addison's.

      I will continue to work at achieving a better degree of hormonal balance, and ultimately, a greater sense of inner peace with all of this... life lessons for sure.

      Mollie :)

      Delete
    5. If I remember correctly, I *think* prednisone only lasts 6-8 hours in the body, and it takes about 2 hours to kick in. If you're taking it at 8:00pm, it would be wearing off around 3-4 am. I had less than pleasant reactions to prednisone over seven years ago, so I don't have that much personal experience with it.

      And oh how I want that cortisol detection device! There ARE things on the horizon though, and I expect them to be coming to market within the next five years ( Example: http://ac.els-cdn.com/S221418041400021X/1-s2.0-S221418041400021X-main.pdf?_tid=41659522-836e-11e5-8560-00000aab0f01&acdnat=1446694707_b4edbf6a094a57dfd290d93392266126 ).

      Best of luck to you! Those life lessons always seem to be the most "fun."

      ~ amber :)

      Delete
  8. I thought prednisone lasted longer in the body? I'm going to check it out because that makes complete sense.. I wake EVERY night between 3:30-4:30, like clockwork. I'm going to try to low dose of dexa like you were taking and see how that goes. I think I was taking way too high of a dose years ago, and it was also all I was taking for my entire replacement regime...way too aggressive. I think my entire life (and mental outlook) would improve if I were able to get decent sleep. Sleep deprivation can really take its toll.

    Do you mind me asking what sort of reactions you had to prednisone?

    tx again ;)

    ReplyDelete
    Replies
    1. Hi Mollie,

      First I want to apologize for it taking me a few days to get back to you. I did not respond well to just dex, once a day, and nothing else. I had to mix dex and HC in order to get some semblance of sleep. It took quite a few years of trial and error, but eventually I figured out something that worked.

      And I think my reactions to prednisone came about because I was only taking it once a day. This was not giving me good cortisol coverage. I'd take 5 mg in the AM, and by the afternoon, as it wore off, I was an unstable emotional mess.

      It. Was. Bad.

      My mom and I went back to the endo and demanded something different because I was going to wreck havoc on myself and my family. This was over seven years ago before we learned of the circadian rhythm or half life of different steroids. If I had to do it over, I would take pred 3x a day and I bet that would eliminate the initial reactions I had those seven years ago.

      ~ amber

      Delete
  9. I've been taking the night time prednisone for about 9 years. I recently bumped up the prednisone to 1.5 mgs and sleep better with that. I'm T1D and Thyroid also.

    I agree with Amber that you are taking the prednisone to early in the evening. Prednisone takes 1-2 hours to kick in and effectively lasts about 8-9 hours with me. I take my night time dose at bedtime at around 10 pm.

    ReplyDelete
    Replies
    1. Ah, 8-9 hours, not 6-8. Thanks for the correction :)

      Delete
  10. For those in Canada https://www.medtronicdiabetes.ca

    ReplyDelete
  11. Hey! Thanks for posting all the info on the pump. Just over a month ago, my endocrinologist suggested using the pump, as 2 of his other patients were having success with it. This morning I'm going in to get hooked up! I'm very excited, although nervous about the maintenance, doing something wrong, etc. But I've had Addison's for 33 years, and believe me, as one gets older, it really drags you down. When my doctor told me about using the pump, I started crying I was so relieved that there was another treatment possibility. Anyhow, I'm on patientslikeme.com, and will start posting info about my pump experiences for other Addisonians. If you're not on that site yet, check it out. And also, thanks for the pics of your labels. I'm going to order a custom pump skin that has the "not insulin" warnings integrated into the image.

    ReplyDelete
    Replies
    1. Good luck on your pump journey! :)

      ~ Amber

      Delete
  12. Has anyone in the UK tried this, AD took the peak years of my life from me and made them hell, its now time to fight back. Any storied from UK.
    Thanks,
    Doug.

    ReplyDelete
    Replies
    1. Hi Doug,

      I know of a few people in the UK that have tried this. Angela is one of them: http://www.daysinbed.com/two-weeks-adrenal-pump-update/

      ~ Amber

      Delete
  13. Amber:
    I was wondering if you would be willing to disclose who the doctor was that was willing to work with you to get the pump since it has been over a year of you having it now? I was recently diagnosed with AI as well as hypothyroidism and I would like to avoid all of the negative side effects that the oral tablets cause. My endo is trying to tell me everything will be fine and I'll just live this normal life but from my research that's really not the case.

    ReplyDelete
    Replies
    1. Hi Tina,

      As a general practice, I do not give out doctor recommendations. We are all so individual and unique that a doctor who works well for one of us might not be a good fit for another one.

      The best way to avoid negative side effects of hydrocortisone is to try to mimic the circadian rhythm with your dosing. This is easier with the pump, but if you split your medicine up into 3-4x daily doses with the largest one being in the morning you can achieve it as well.

      ~ Amber

      PS - What is "normal life"? It's a concept I'm unfamiliar with. I'd much rather prefer to live the Clearly Alive life ;)

      Delete
    2. Amber,

      It just seems like SO MANY people are having negative results and would benefit from the pump. We're wanting a doctor that would be willing to work with us on getting a pump but nobody that has had success finding a doctor is willing to disclose who their doctor is which is so confusing to me. Do the doctors not want their name put out there?

      Delete
    3. Do you live 8n a city that has a hospital affiliated with a university? I would just start calling doctors and ask them if they are familiar with the pump. I've never asked mine. Good luck. Maureen

      Delete
    4. Hi Tina,

      Yes, several of us as patients run the risk of loosing our doctors if we share their names. They have asked specifically to not have us share, as they also run the risk of potentially loosing their practice if they stray too far outside of what the government deems they can and cannot treat.

      It is stupidly political.

      Other doctors take a "hands off" approach. They are willing to let us stay on the pump as long as we completely self manage. They maintain, but they do not have the skills to start a brand new patient on the pump, and knowing that we are hesistant to share thier information.

      A few years ago, Professor Hindmarsh used to consult with American Endos and coach them on the pump method of treatment. He'll only speak to Endocrinologists, and I'm not sure if he still offers that service. But it is perhaps worth a shot contacting him.

      Maureen is right about a university affiliated hospital. I did have some luck with endos there being "aware" of the treatment but informing me that it would be many many years before they would ever be able to use it. But aware is better than "No. This doesn't exist." when it so clearly does.

      And, oh, how I wish this treatment wasn't so political and contentious. It's a perfect example of the government interfering with treatment causing Americans harm.

      ~ Amber

      Delete
    5. Well Gals, after 26 years of AI, I have learned to mostly treat myself and not depend on an endos knowledge. Most of them know little about adrenal/pituitary disease, so when looking for a doctor you need to do your research. Call the office and see if the doctor will call you and talk to you. Ask if they have treated patients with your condition, if not stay away and keep looking. Good luck to all. Maureen

      Delete
    6. Amber: I guess that makes sense but is frustrating. Knowing of a much better solution is great but not actually being able to actually use is a bummer. I may call around as Maureen suggested but there's just so many different endocrinologists so that could be a drawn out process. I like my endo but I think he gets annoyed with me because I already have been and plan to be very proactive in my care.
      If one was to self manage their care what would that entail? Once you get the dosing down is it pretty set from there or is it ever changing?
      Hopefully one day the government will allow the pump for all of us or better yet find a cure!
      I think I will try to contact Professor Hindmarsh. Thank you for the advice. I appreciate it!

      Delete
    7. Hi Tina,

      If you can send me an email to clearly.alive@gmail.com I can provide you with more details :)

      Also, I've had to do as Maureen suggested and call many doctors offices. I just recently moved states this past January, which required a new endo. I think we called four. Most had a 6-9 month waiting list or preferred to focus on diabetes.

      Only one was like "We can see you on Tuesday."

      It's all about finding that open door. Even if it seems beyond impossible, never give up and never be afraid to advocate for your quality of life.

      ~ Amber

      Delete
    8. Hi Amber, Where do i buy a pump for my daughter?
      Were do get the refills of hydracortisol from?
      Our GP is near useless.
      Fred.
      fred@gas-n-fuels.co.uk

      Delete
  14. I've been on oral hydrocortisone for 7 years but earlier this year I started to feel like I did back before I was originally diagnosed. Stress dosing did not make any difference. Long story short, my endocrinologist believes that I am not absorbing the oral meds and has ordered a coritsol pump for me. It will take awhile to get it, depending on how long it takes my insurance to approve it. I'm hoping sooner than later. I want to start feeling like I am alive again.

    ReplyDelete
    Replies
    1. Good luck! Some times insurance battles are a pain, and each insurance is different. For example, my insurance now refuses to cover the cost of a pump but will help pay for the cost of supplies. But then they refuse to cover the cost of the solu-cortef.

      If insurance refuses, there are other options. I'm so thankful you have a endo that is willing to start you on this treatment, and yes, let's get you feeling alive again!

      ~ Amber

      Delete
  15. Hi Amber, Where do i buy a pump for my daughter?
    Were do get the refills of hydracortisol from?
    Our GP is near useless.
    Fred.
    fred@gas-n-fuels.co.uk

    ReplyDelete
  16. Amber-- have you also ever seen this one? Wireless, waterproof, teeny-tiny! https://cdn2.hubspot.net/hubfs/1775161/Email-Newsletter_LandingPage/LANDING_PAGES/Product_Brochure/Cellnovo-flyer-UK-August2016.pdf (From LJ Markland)

    ReplyDelete