Cortisone for autoimmune pancreatitis

[bad1080]

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!

 

[bad1080]

bumping this once, hoping for replies because this is starting next week

 

[Wayne]

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.

 

[bad1080]

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.

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

from: https://www.sciencedirect.com/science/article/abs/pii/S1568997219301508?via=ihub

 

[bad1080]

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.

 

[bad1080]

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.

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.

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.

 

[Learner1]

If you are having a serious autoimmune problem, could your doctors try:

• IVIG
• Rituximab
• Plasmapheresis

 

[bad1080]

If you are having a serious autoimmune problem, could your doctors try:

• IVIG
• Rituximab
• Plasmapheresis

thanks!

Intravenous immunoglobulin (IVIG) is an infusion treatment that manages immunodeficiency disorders

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

 

[bad1080]

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.