The news with me is they now want to delay further intrusive procedure (a planned ERCP with spyglass and dilatation) because my levels have improved. I queried with my consultant regarding cases of SC-AIP and variations of cause, she readily agreed my IGG levels should be checked, almost as if she was about to suggest it before I mentioned it. (with a slightly reassuring and hope-inspiring (PSC?) written on the blood test form.)
IGGs all came back normal except for IGG4 which shows as elevated at 2.38. My GP let me know the figure but can’t interpret the findings. The last time I tried to phone my consultant direct I was given a telling off by a complete b***h of a ward clerk so I’m now reluctant to try and chase for a discussion because in her words ‘the doctors are very busy with patients who are really ill’… I have an appointment in November with the consultant again.
I was just wondering if any of you guys know if that is a particularly high elevation of IGG4, enough to warrant a possible change in diagnosis toward something like IGG4 disease-related Autoimmune Pancreatitis? I know that IGG4 levels can be raised in classic PSC anyway, I just wondered if anyone can tell from my level?
My Alk Phos is 139 and IGG4 as I say is 2.38, other that all levels are back to normal (according to GP).
Hello James! Have you done a MRCP, ERCP or a liver biopsy? If you have an MRCP, ERCP or liver biopsy that shows beading/strictures of the bile ducts or signes of autoimmune pancreatitis, and your IgG4 is >1,5x the upper normal limit (for at least 6 months), then you by definition have IgG4-related disease.
Thanks Andreas, I’ve had an MRCP and a regular endoscope which shows a stricture at the distal end of the CBD and a ‘very heterogenous pancreas’. A guess it’s too early to tell then. I think the GP said the upper normal limit was 0.86, but I can’t find any reference to the normal ranges online.
It depends on what units it is measured in. In the US it’s generellt measured in mg/dL (normal is about 2-120 mg/dl) and in Europe it’s generally measured in mg/L (normal is 0.2-12 mg/L).
Thanks again Andreas. I’m in the UK, so it would be the latter, but either way a 2.38 highlighted as elevated doesn’t seem to make sense then. Guess I’ll ask them in November.
So whatever units it’s being measured in, it does seem like a significant elevation of IGG4. Still trying to contact main Doctor/Consultant at the hospital to discuss.
Hi Dane, they specifically requested Igg’s as I’d referred my consultant to this study https://link.springer.com/article/10.1007/s00535-■■■■-8
My levels had improved and my case shares a couple of the things in common with the alternate diagnosis. So she agreed that in that case I should be tested, she requested Igg’s on the form and they came back separated into 1,2,3 and 4 on the results, with only Igg4 abnormal. This is in the UK, I guess they’d be tested for and reported on in the same way elsewhere. Worth asking your specialist. A low percentage of classic PSC cases have elevated Igg4 anyway, so it’s not conclusive, but as Andreas mentioned, if it’s elevated beyond 1.5 times the upper normal limit for an extended period of time, this might point to an alternate version of the disease.
Ask them at your next clinic, from my experience the GPs aren’t able to interpret the levels anyway so you’d have to speak with the consultant. On the sheet it’s down as ‘IGG subclasses’. On the blood test request form it was down as ‘Iggs’… None of my test results mention igm, Iga or gig, so it doesn’t seem we’ve been tested for the same things. I see you’re in the UK too. I had blastover work done on my back right before my symptoms started but they discounted any tattoo related cause when my Hep results came back clear. I do still wonder whether I’ve have a massive reaction to heavy metals in the ink or something pre-existing on an autoimmune level that’s been exacerbated by the amount of tattoos I’ve got. Or maybe I’ve got the classic PSC and just very good improvement in levels…The Igg4 is highly suspect though, I’ve just got to get them interested enough to keep an eye on it. A moderator on a Fbook forum said they should be ruling out Igg4 disease right at the start before diagnosis, but it was only when I mentioned it at my clinic after MRCP and EUS that they even requested the test. Anyway, whatever happens, it’s no fun and I wish you well.
I’m heavily tattooed to (Tattoo artist) they don’t use heavy metals in the ink now haven’t for years unless your artists is buying some real shoddy stuff.
I’ll ask next time but getting myself refer to a specialist team in Birmingham as the gastro team I was seeing didn’t seem to have much knowledge on the disease.
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.
Hi James,
I noticed you communication reg. IgG4 related disease. I was diagnosed with PSC with a question mark. MRCP showed narrowed big bile ducts however I have also elevated IgG4 ( not much but it is there - 0.95 g/l (0.04-0.86). May I ask how you ended up with your IgG4 - was it confirmed? did it affect anything else in your body. Thanks a lot.
Maybe it was 23.8 (then it would be elevated if measured in mg/L)? Take a look at your test results again and post them + normal range.