Do we have any autoimmune pancreatitis and psc folks out there?
I am trying to educate myself on the subject but thought I’d start here; You guys always have the best for me 
My three hospital vacations for pancreatitis were due to medications. Not the same thing as what you are looking for.
Jeff
Thanks all the same, Jeff.
On an MRI, the tech noted, ‘Incidental note of 2 small subcentimeter cystic foci in the
body of the pancreas, possibly small side branch IPMN. These are
not identified on prior imaging.’ which of coarse threw me off. Starting my research… have yet to speak to our TX Hepatologist.
Have you been dx’d with or told you might have AIP? Have you had IgG4 testing? I used to have it every 3 mths, now mthly to monitor my AIP. Feel free to ask any questions about AIP/SCC (secondary sclerosing cholangitis) or PM me if you wish.
Hello, Alix.
We haven’t tested IgG4 nor discussed AIP with the docs yet. We haven’t
spoken since having the imaging was done. I’m still learning… trying to
get my notes together before we talk to the docs. Do you have any questions
I should definitely not forget to ask? All we (my husband and I) know at
this point is from the report. Thanks for reaching out. I appreciate it.
Main thing is to question if AIP… some hepatologists will still miss it. Your husband may not have it at all, but I would push for IgG4 testing unless dr has good reasons for absolutely ruling out AIP. The test isn’t 100% reliable however. My SCC is the result of AIP and now they’re apparently working independently of one another. Have never had IPMN or any tumors, but presentation, as with all autoimmune disease, can vary greatly. Off-hand, can’t think of specific questions to ask. Initial tx for AIP is prednisone. If unsuccessful multiple times, Imuran usually next. Pls do update us after you see hepatologist.
Thank you for that info., Alix. What I can’t find is long term quality of
life info or where having IPMN may take us. Maybe I’m not searching with
the right words… maybe I’m not understanding the condition.
Hi Gloria,
I have two side branch IPMN cysts on my pancreas and the doctors just monitor them for growth. Mine have stayed the same for several years and my doctors don’t believe we need to be too concerned. When we first found them on MRCP, my doctor scheduled an Endoscopic Ultra Sound to make sure they didn’t have any features which would lead them to suspect cancer. Everything came out clear. My understanding is that side branch IPMNs are more common than once thought because they are finding them incidentally now because of better imaging modalities. I have been tested for Autoimmune Pancreatitis and it came back negative and the cysts are not related.
Take care,
Crewmom
Thank you, Crewmom. I appreciate you taking the time to respond to my post.
Best, G
Hi Gloria,
Yes, I have been diagnosed with IgG4 related PSC and subsequent Pancreatopathy.
Apart from taking medication, which is now 10mg Prednisolone and 10mg Azathioprine daily plus Creon with meals there are not too many issues.
The Prednisolone makes me very hungry but I gave up driving and cycle everywhere so weight gain is not such a problem as it could be.
Sometimes I fall asleep in the afternoons if I have nothing to keep me occupied but as I approach my 65th. birthday it is probably to be expected!
Through careful diet and exercise I have managed to avoid medication for diabetes as my blood sugar is under control but I am told that this will be my next challenge.
Reading the posts on this site it is clear to me that I am very lucky indeed.
Hi, I have improved levels since July (almost back to normal), a very heterogenous pancreas with a stricture in the head of the pancreas, and on testing, an Igg4 of 2.38 g/L (0.04-0.86 being the norm). I’m in the UK.
So that’s almost 3 x the upper limit of normal. Would any of you guys view that as a high or significant elevation? I’m due to speak to specialist this week, should I be pushing for investigation into an alternate diagnosis other that the standard, classic PSC?
Many thanks
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Hello James! Yes, that’s a significant elevation. If you have symptoms of autoimmune pancreatitis and IgG4 >1,5x the upper normal limit, you by definition have IgG4-associated pancreatitis. This is a good thing, it means that you most likely will respond to prednisone.
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Thank you Andreas, I’m still trying to get hold of my main consultant as they haven’t contacted me to discuss the results. As I understand it the sooner I can be given Prednisolone the better, but I’m not due to see them again until January. So, I will be asking them this week; have they ruled out Igg4 related autoimmune pancreatitis and if so, why…and if not, please give me some Pred!
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Great! I hope for the best! 
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They have written to me saying that they don’t consider it a significant elevation and have decided not to prescribe steroids. They will see how I’m doing at the next clinic in January. Well, what can I say…At least I have it on record that they’ve chosen to withhold steroid treatment.
Go see another doctor. Very few doctors know what IgG4-associated disease is. The one thing I learned when I got PSC was never to blindly trust any doctor.
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Thanks Andreas, I will.
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IgG4 levels didn’t normalise. February MRCP showed ‘sausage shaped’ pancreas. PET CT from last week showed uptake in pancreas, prostate and lymph nodes. Today I start 40mg a day Prednisolone for IgG4 related disease.
James, I hope everything works out.
Jeff
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Many thanks Jeff, and for your advice and support.