Glucocorticoid-induced Adrenal Insufficiency

@staylorrn2000

No ... I never had any problems or experience with mixing manufacturers. I took whatever was dispensed to me. As screwed up as my immune system is, my medical records still have me listed with NKA ... no known allergies.

I tried cutting pills and breaking them in order to take smaller doses. That didn't work out so well. When my rheumatologist found out she prescribed 1 mg tablets to go with 2.5 mg tablets and 5 mg tablets. That way I could make any dose I needed. She might have trusted me too much with my taper style but she knew I was trying to taper off prednisone.

Hello. I’m new here. How do things work here

It is working. This topic isn't closed but if you are newly diagnosed with PMR -- I wouldn't worry about adrenal insufficiency yet. There are other topics to choose from or you can create a new topic. I don't think someone is here all the time. I'm here because I don't have anything better to do at the moment.

Hello @paulmark, I would like to add my welcome to Connect along with @dadcue and others. Like Mike @dadcue mentioned there are many different discussions and topics in the PMR Support group and if you don't see the topic you want to discuss you can start a new discussion. Here's a list of all of the discussions in the PMR group if you want to scan through them - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

You can click the Help Center link at the top of every Connect page and find step by step information on how to use Connect. Here's the link for the Help Center - https://connect.mayoclinic.org/help-center/.

Have you been diagnosed with PMR?

@dadcue Patient experts? 🤣 People living with the disease know less than the doctors? I hardly think so. Patients spend months if not years doing research on GCA because not enough is known about it. Big pharm is making a fortune off black box drugs that help some and actually kill others. Do some research on them. Yes alternatives are needed but should not have a black box warning. Prednisone isn't the greatest but it saved my eyesight when I went blind and yes, many people are on low dose Prednisone for life. A black box drug is no guarantee you'll get off it. Wishing you all the best.

@bettebaldwin I am wondering what the booster dose should be as I am facing vaccination season and hopefully travel to see family. I live in a condo in a continuing care retirement community and with over 700 people mostly also independent, I am around a lot of people. Many of them travel extensively and also have grand and great grandchildren (germ magnets) who visit, so exposure risk is elevated and I don't dare skip a vaccine. I am afraid that due to my rheumatologist's having overlooked the early signs of prednisone withdrawal, my adrenal glands are permanently damaged. I am just hoping that the two extreme episodes of hypotension with rapid heart rate to compensate did not damage my heart. The severity was due to another medical mistake of not being taken off hypertension medicine when I was already hypotensive! My pharmacists who counseled me first to cut down then to cut out may have literally saved my life

@kobellava I totally agree that patients know more about their disease than doctors, and some time ago, one actually admitted that to me. I always research not only my diagnoses but also the combination of symptoms I experience and frankly, when there has been a difference between my doctor's diagnosis and mine, I have been right 100% of the time. Not a bad record! Doctors are trained to diagnose according to algorithms. Public health people (my background) are trained to look more globally, as well as to keep looking until you find the answer. My rheumatologist missed the early signs of my going into prednisone withdrawal and although I hadn't heard of the possibility, I did recognize many of the symptoms as something different going on that seemed rheumatological in origin. Having been recently "misdiagnosed" by a stupid triage nurse as having heart problems when I was going into an adrenal crisis, I am terrified of the continuing tendency of the medical profession to react to it like Pavlov's dog to a bell -- hear "heart rate" diagnose heart attack. And if I ever start to experience GCA, the diagnosis will be stroke, and precious time will be lost while the stroke team tries to shove me into their box. I saw this happen with my husband when his amyloidosis caused swallowing problems. Hours of tests, repeating repeating repeating in a vain attempt to prove it was a stroke. The resident in the ER told me he didn't think so but his "team" (who were not present) kept insisting it was. I was only the little woman and summarily dismissed.

@potterywoman I'm sorry for what you and your husband have been through. I've had similar experiences. I was told I had a stroke and a month later I returned blind in my right eye and a curtain in the left. All the symptoms of GCA were there the first time I was admitted. So yes, have to be aware of their dangerous lack of knowledge. There are people all over the world that are blind because of a delay in diagnosis. Most doctors know very little if anything at all. I had a vascular doctor tell me GCA is not systemic. I said are you serious? A simple Google search will tell you it is. A neurologist told me we don't have nerves underneath our ribcage. We certainly do! Have to advocate for yourself with these diseases. Had to be terrifying for you with the adrenal crisis. We know our bodies better than anyone. We live in them. I do a lot of research too and have, like you been right 100% of the time. I've spoken with people in various countries that feel the same. I was in an excellent group on FB until it wasn't when they didn't let me post what I was using to get rid of a rash that a woman was having a serious problem with. So much for wanting people to help each other, right?? Thank you for sharing your experiences, it's greatly appreciated. Wishing you well and many blessings on your journey.

@potterywoman The proper answer is speak to your GP or Pharmacist but you might find sharing this Society of Endocrinologist Sick Day Info with your clinician as part of that discussion. https://www.endocrinology.org/media/4169/ai-and-exogenous-steroids_patient-information-sheet.pdf. I think the wise advise is do the research but check with a clinician first before doing anything.

@bettebaldwin Well, I could have almost written the first part of your reply to me. I checked with my pharmacist because I am now between doctors. I guess you missed the part that when the doctor diagnoses me and my self-diagnosis differs, bloodwork has proven me right 100% of the time. As a doctoral trained retired public health professional, I am more than conversant with the medical literature -- PubMed and Stat Pearls are my go-to sources. And I look at the total picture. My rheumatologist's nurse and the triage nurse for my assigned PCP whom I have never met BOTH heard "heart" and decided that I was having a heart attack. That was passed on to my new and never met PCP. My records show that I was on medicine for HYPERTENSION. She would have taken that as gospel and refused to cut my dose. Without my pharmacist, telling me to cut down (and then out when I continued to experience episodes of almost fainting), I could have died. He has a doctorate in pharmacology, and since he knows my total health picture, he watches out to make sure that siloed physician #1 doesn't prescribe something contraindicated by an issue treated by siloed physician #2. There are several times in which he has saved me from having one of my other autoimmune conditions flare because of a prescribed medicine. The examples are neither here nor there, except to say that a tumor on my parathyroid affected my endocrine system. For years, I complained of symptoms to my PCP who kept telling me my pain and loss of two inches of height were due to "posture." Uh, no. By the time I convinced her to test me for elevated parathyroid hormone -- and the test cam back extremely high -- she finally gave me an appointment with an endocrinologist. And when a drug she prescribed later -- again for hypertension -- not only caused me to faint from hypotension but also affected my cholesterol, her reaction was to prescribe statins. Fortunately she did take me of the drug and recommended flaxseed. And guess what! LDL down, HDL up.