Hi all,
Mum takes cortisol acertate for adrenal insuffiency.
I understand you take hydrocortisone for arthritus. I think it has the same side effects, like electrolyte imbalance and immuno suppression?
If so, what did you do to keep your immune system strong? Do you get sick all the time?
It really depends on dose and purpose of it. Replacement therapy is trying to mimic what the body would produce of its own cortisol but can’t. The dose shouldn’t be causing big side effects. This forum is for polymyalgia rheumatica and giant cell arteritis (not arthritis) , autoimmune conditions that need a more potent steroid, Prednisolone. When people are given steroids for these conditions the whole point is to weaken the immune system not keep it strong. If it is rheumatoid arthritis that you mean, the treatment is usually a different immunosuppressive treatment called Methotrexate. Again keeping the immune system strong is the opposite to what is intended. Can you give a bit more detail because situations vary.
We don't have arthritis - but an arteritis, inflammation of blood vessels. Not that it makes that much difference, corticosteroids are corticosteroids.
Does your mother have primary or secondary adrenal insufficiency? There is less of a problem about electrolyte imbalance in the secondary form we have - the cause of the insufficiency can make quite a difference. Context is very important.
Cortisol acetate isn't that commonly used but I gather from a quick look round that it is a precursor or prodrug - it must be processed by the liver to form cortisol which is the active substance and it has delayed absorption. It is favoured over hydrocortisone because it possibly more closely mimics natural cortisol.
I have been on steroids for 15 or 16 years and to be perfectly honest I have never found I catch more infections than I did before. I have not yet knowingly caught Covid - though I don't really spend a lot of time in crowds at any time of year and I live in Italy so many things are done outside which probably helps. I still carry a mask if I am going somewhere potentially busy - like public transport at school out times - and if someone is coughing all over the rest of us, I will wear it. That helps reduce the risk with any airborne pathogens - not just Covid, colds and flu too. Avoiding such situations is still a good plan. the incidence of flu also fell during lockdown!
Her doctors should be monitoring her for the other aspects and this is an excerpt from a textbook which is quite clear for academic text!
"Chronic Management of Adrenal Insufficiency and Prevention of Adrenal Crisis
The optimal glucocorticoid maintenance regimen is hydrocortisone 15 to 25 mg/day or cortisone acetate 20 to 35 mg/day. This should be divided into twice daily or three times daily doses with the highest dose in the morning and the lowest in the afternoon (not later than 4 to 6 hours before bedtime)6 in order to mimic endogenous glucocorticoid pulsatile circadian release, which reaches its highest peak in the morning. Hydrocortisone and prednisolone are active glucocorticoids, whereas prednisone and cortisone acetate are prodrugs that require activation via 11β-hydroxysteroid dehydrogenase type 1 in the liver before exerting their activity.
Patients with primary AI need mineralocorticoid replacement to maintain water, electrolyte, and blood pressure homeostasis. Mineralocorticoid replacement is given in the form of fludrocortisone at initial doses of 50 to 100 µg in adults. Patients are recommended to not restrict the salt in their diet.
Patient education, such as increasing dose of replacement therapy (“stress dosing”) when sick or planned for a medical procedure/surgery, using parental hydrocortisone as necessary, and seeking medical assistance promptly, is the best approach to prevention of adrenal crisis.6,38,40 Follow-up care with an endocrinologist is necessary to periodically reevaluate for symptoms of inadequate glucocorticoid replacement (symptoms of AI) or for signs of excessive glucocortocoid replacement (features of Cushing’s syndrome). The endocrinologist should monitor for adverse metabolic effects of excessive glucocorticoid therapy, such as weight gain, hyperglycemia, dyslipidemia, and low bone density. The adequacy of mineralocorticoid replacement should be assessed by measuring orthostatic vital signs, serum potassium, and plasma renin activity. Additionally, the endocrinologist should counsel patients to wear a medical alert identification and reeducate patients at each visit about how to recognize adrenal crisis, when and how to increase glucocorticoid dosing during illness, how to self-administer parenteral glucocorticoid, and when to seek emergent medical care."
What adverse effects does your mother suspect she is experiencing? More specific questions might help us help you.
Really as far as infection is concerned and "strengthening" the immune system there is a lot of guff on the internet - most of it aimed at the sources making money out of you by selling supplements. If anything worked that well - believe me it would be prescribed!! A good healthy diet, not too much in the way of carbs and absolutely NO ultra processed carbs, with a rainbow of fruit and veg (all colours available) is probably the best approach together with the obvious - no smoking, moderate alcohol and so on. Cold water immersion is said to help strengthen the immune system - but that is due to its suppression of natural cortisol which itself stresses the immune system when in excess so I'm not sure that is relevant here. The important thing with all the alternative approaches is to understand their basis. And a lot of things may be playing a good role at the right levels, a bad one when in excess - it is important to know which.
Hope this helps but do ask again if you have a question we might be able to help with.
What an amazing answer, and not even about PMR, you should be available on prescription 😂
No prescription charge here!!!
It is simply a reflection of my pasttimes for the last 60 years since I first started on the medicoscientific life!!!!I had to make a conscious effort to start reading anything else - and I'd still rather watch a medical or forensics documentary than other form of TV!
Goodness, perish the thought, it's been a long time since I payed for a prescription. Your advice here is priceless anyway! You've supported me here for several years now and it's much appreciated . Thank you for sharing your pastime.I know what you mean about TV, there's not much quality, I need to be learning something if it's to keep my attention.
Some comment that is, impressed 👌
Thanks so much for your answer and it was full of knowledge and eye-opening.
I was obviously naive about the other uses of cortisol. Would Mum take more? No because she gets a sore top of the head when she takes more.
Mum is *VERY* strict with her diet and we've started doing weight training together and Mum really enjoyed it and found it fun to train with me.
Since she has been taking the cortisol acertate, she gets hospitalised a lot and always had low sodium levels so she has a cup of soup every day and now. when she is hospitalised, her sodium levels are okay. AFAIK, she only had these problems since taking the cortisol acertate.
Since taking it, she has low neutrophils and low WBC, hypothyroidism (people with adrenal insufficiency get hypothyroidism) and she catches every cold or flu that's doing the rounds, like RSV (she was hospitalised last year with it). My sister also caught it.
This year she was hospitalised with severe neck pain and then severe foot pain. They found nothing wrong with Mum and did every test under the sun. Tests for Hashimotos, antibody tests, an MRI of her foot which only showed soft tissue damage. The opiods they gave her made it appear like she had low sodium so I rang the Hospital's emergency line. She was having conversations with people not there. All she and I got from Hospital was stressed out.
We even had one Doctor in the past, who sadly passed away, do a stool test.
Her TSH was ~5.9, in Hospital.
Anyway, I'm just replying to give you some context. I'd like to very slowly weane her off the cortisol acertate to see if she starts making cortisol. In her recent test, her cortisol was up and it has never been up so we're doing something right.
Thanks again for reading, if you do.
I read everything, especially when it is a reply to me!
Yes, steroids tend to make you lose salt through the urine - and one of the signs of adrenal insufficiency is craving salt. Get the crisps and olives out for the nibbles! No reason not to try to wean her and you are obviously familiar with the risks which don't appear to be mitigated a lot by the cortisol acetate so know what to look for. Her care seems a bit perfunctory - it seems to be an English-speaking problem that raised TSH is ignored, Patients in the UK experience that too - what here in mainland Europe would be treated is dismissed as fine in the NHS.
All the best.
Thanks for your well wishes.
The Clinician on the weekend said Mum's TSH reading didn't need clinician invervention and when she was admitted for the neck pain, they didn't do a thyroid test.
I take Hydrocortisone for Adrenaline Insufficiency and feel good on them. It took a couple of weeks to settle on them and to start with I had an uncomfortable tummy in the mornings. All good now.
Mum has a lot of side effects like a soreness on the top of her head and it disrupts her sodium levels and also affects her immune system and she gets sick easily.
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