Cortisone for autoimmune pancreatitis

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bad1080

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i guess i developed autoimmune pancreatitis as a comorbidity of my ME-CFS (https://www.medrxiv.org/content/10.1101/2024.12.30.24319800v1) and my gastroenterologist wants me on what they call a small dose of cortisone for autoimmune pancreatitis (for a while, not indefinitely). i know of the hypersensitivity of PwME to glucocorticoids (https://me-pedia.org/wiki/Glucocorticoid) and i told them about it. they don't seem to know much about ME-CFS but they are open and responsive to studies i link them.

my question now is what else do i need to take into account, is there something i am missing? and if someone has personal experience with this situation i'd be interested in hearing about it!
 
Wayne

Wayne

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I'd suggest looking into high dose Vitamin D, which has been purported to be able to successfully address various autoimmune issues. If interested, I'd recommend checking out Dr. Eric Berg's videos on YouTube.
 
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bad1080

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Wayne said:
I'd suggest looking into high dose Vitamin D, which has been purported to be able to successfully address various autoimmune issues. If interested, I'd recommend checking out Dr. Eric Berg's videos on YouTube.
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thanks, the first result for "dr. eric berg vitamin d" is called "VITAMIN D IS DANGEROUS" so i'm not sure i got the right guy:

my blood tests for vit.d have been good (hovering around 50ng/ml) for years and i have been supplementing it for even longer.

edit, found this:
Thus, it is necessary to integrate vitamin D in autoimmune patients, especially those who are taking corticosteroids
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from: https://www.sciencedirect.com/science/article/abs/pii/S1568997219301508?via=ihub
 
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bad1080

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i can't edit the OP so i add it here:

i found out you can do a small dose of up to 50mg for up to a week without needing to taper and without withdrawal - this is not medical advice and ymmv

i'll keep you posted

edit: it felt like i already had an increase in fatigue after just 24h from my first dose of 45mg. it then took ~2h from my next dose to feel somewhat normal again.
 
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bad1080

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bad1080 said:
it felt like i already had an increase in fatigue after just 24h from my first dose of 45mg. it then took ~2h from my next dose to feel somewhat normal again.
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what i felt there might have been PEM (at least in part) from the hospital visit. but even now i feel like shit after taking the prednisolone.

it feels exactly like it says on me-pedia:
While glucocorticoids are anti-inflammatory in the periphery, they can be inflammatory to the central nervous system; these findings suggest this effect may be amplified in people with ME/CFS due to increased sensitivity to glucocorticoids.
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i am having trouble with my vision, with brain-fog, and back/spine pain. but i also notice the improvement with inflammation in my joints and my digestive system. but i don't think it's worth the trade off as i barely feel human.
 
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bad1080

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Learner1 said:
If you are having a serious autoimmune problem, could your doctors try:
  • IVIG
  • Rituximab
  • Plasmapheresis
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thanks!
Intravenous immunoglobulin (IVIG) is an infusion treatment that manages immunodeficiency disorders
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that sounds like the opposite of what they are trying to do from what i understand (suppress the immune system because it is hyperactive)

rituximab sounds like it goes in the right direction but is not for autoimmune pancreatitis AIP (and it has nasty side-effects: "Rituximab may cause a serious brain infection that can lead to disability or death")

plasmapheresis doesn't seem like something the insurance would cover for AIP but i can ask. iirc the doc said something about biologics as an alternative: https://www.drugs.com/medical-answers/what-biologic-drug-3565613/ but there are risks involved as well
 
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bad1080

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so after first lowering the dose to 20mg without much change in side-effects i discontinued the prednisolone. today i felt a noticeable shift in energy, it felt like my muscles were able to get some oxygen again. idk if it was the lack of sleep (my sleep was even worse on prednisolone), some kind of rebound or just the lack of side-effects but i was able to get some groceries and even cook a little for lunch today.
 
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bad1080

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got the notification yesterday it is not autoimmune... and it is not cancer either, so i am one of those cases where they don't know what's causing it i guess, fml
 
Learner1

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bad1080 said:
got the notification yesterday it is not autoimmune... and it is not cancer either, so i am one of those cases where they don't know what's causing it i guess, fml
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How did they decide it wasn't autoimmune? I've never seen any doc test every possible type of autoimmunity, but a lot of patients suffering from uncommon autoimmune antibodies that finally get identified.
 
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bad1080

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Learner1 said:
How did they decide it wasn't autoimmune? I've never seen any doc test every possible type of autoimmunity, but a lot of patients suffering from uncommon autoimmune antibodies that finally get identified.
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the info was just in advance via email, i haven't seen the test results myself. the test was done via biopsy. my next appointment is next week.
 
Learner1

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Perhaps you have one not found through biopsies. From the web:

"No, a biopsy alone cannot rule out all autoimmune diagnoses, as it's just one tool in a comprehensive diagnostic process that also includes medical history, physical exams, and blood tests. [1, 2, 3, 4, 5]
Here's a more detailed explanation: [2, 3, 4, 6]
  • Biopsies are valuable, but not definitive: While biopsies can provide valuable information about tissue damage or inflammation, they don't always confirm or rule out autoimmune conditions, especially those that affect multiple organs or systems. [2, 3, 4, 6]
  • Autoimmune diseases are complex: Diagnosing autoimmune diseases can be challenging because symptoms can be vague, overlap with other conditions, and vary in severity and duration. [1, 3, 5]
  • A combination of tests is needed: A comprehensive approach to diagnosis often involves a combination of: [3, 4, 5]
    • Medical history and physical examination: This helps the doctor understand the patient's symptoms and overall health. [3, 4, 5]
    • Blood tests: These can help identify specific antibodies or markers associated with autoimmune diseases. [2, 4, 5, 6, 7]
    • Imaging tests: These can help visualize internal inflammation and organ involvement. [2]
    • Biopsies: These can provide tissue samples for further analysis. [2, 4, 6, 8]
  • Examples of conditions where biopsies are important: [8, 9, 10]
    • Autoimmune hepatitis: Liver biopsies are often used to confirm the diagnosis and assess the extent of liver damage. [8, 9, 10]
    • Sjögren's syndrome: Lip biopsies can help diagnose this condition. [2]
    • Cutaneous lupus: Skin biopsies can help diagnose lupus affecting the skin. [11, 12]
    • Autoimmune pancreatitis: Endoscopic core biopsies can help diagnose this condition. [13]
  • Differential diagnosis: Doctors may use a process of elimination (differential diagnosis) to rule out other conditions that could be causing similar symptoms. [14, 15]
Generative AI is experimental.
[1] https://www.hopkinsmedicine.org/hea...hat-are-common-symptoms-of-autoimmune-disease
[2] https://www.amnhealthcare.com/blog/...st-difficult-autoimmune-diseases-to-diagnose/
[3] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/autoimmune-disorders
[4] https://www.allergy.org.au/hp/autoimmunity-laboratory-testing
[5] https://www.lornelabs.com/news-events/blog/blood-tests-for-autoimmune-diseases
[6] https://dermnetnz.org/topics/autoimmune-diseases-in-dermatology
[7] https://www.medicalnewstoday.com/articles/blood-tests-for-lupus
[8] https://www.niddk.nih.gov/health-information/liver-disease/autoimmune-hepatitis/diagnosis
[9] https://www.mayoclinic.org/diseases-conditions/autoimmune-hepatitis/diagnosis-treatment/drc-20352158
[10] https://britishlivertrust.org.uk/in...er-conditions/autoimmune-hepatitis/diagnosis/
[11] https://nyulangone.org/conditions/cutaneous-lupus/diagnosis
[12] https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790
[13] https://www.mayoclinic.org/diseases...pancreatitis/diagnosis-treatment/drc-20369804
[14] https://my.clevelandclinic.org/health/diseases/21624-autoimmune-diseases
[15] https://pmc.ncbi.nlm.nih.gov/articles/PMC7197794/ "
 
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bad1080

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Learner1

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bad1080

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Learner1 said:
If it's not autoimmune, then one wonders what the other causes of pancreatitis are...

Oxidative stress, caused by a wide assortment of things, is a major driver of pancreatitis. Do you know what might be causing huge oxidative stress?
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my best guess is me-cfs
 
Learner1

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bad1080 said:
my best guess is me-cfs
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ME/CFS is just a list of symptoms, which can be caused by a lot of things... i.e., your ME/CFS may be caused by a different set of things than mine or other people's. Figuring out what the drivers of your illness are and attacking those in a thoughtful and orderly manner can cause reduction in symptoms and weird health outcomes and promote becoming a healthy person again.

Most of us have some combination of infections, toxicity, and/or genetic factors, coupled with running out of beneficial biochemistry (vitamins, minerals, antioxidants, amino acids, etc ) to run the processes to fight these things, and things like pancreatitis can result.

Look for the root causes ...
 
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