"critical high" GGT

[mumsy613]

Hi

History:  
Six years ago in hospital for acute pancreatitis (really bad) for five days which ended in gall bladder surgery.  That in spite of all scans normal with a small floating gallstone.  Went home with chronic upper quadrant pain with a few lesser acute attacks.  Given enzyme supplements which were ineffective.  Lipase and amylase were elevated.  Symptoms went away with rituximab treatments for SLE.  Now, again (not influenced by rituximab) I am having upper quadrant discomfort.  This time my "routine" labs came back with GGT "critically high:" at 498.  Alkaline Phosphatase, ALT, and AST are all in range although hitting the top.  Most of my life I hardly ever drank, now drink a glass of wine probably 4 out of seven days.  

Any ideas out there on the GGT?  

Thanks,  Fran

[mumsy613]

I have the usual nightmares with prednisone....moon face, lump of fat on the back of the neck, raging hunger.  I hate the side effects.  The super high doses of prednisolone put me in overdrive.  No sleep and cleaned house for three days every time.  Sadly, that was the only time I felt like cleaning closets.  After that seven months of infusions, I benefited with a three month remission.  Not worth it.  I was hospitalized for a blood infection because I was so immune suppressed.  Actually, I was sick more than well when immune suppressed.  

Except with rituximab.  At least that treatment leaves a good share of immune system intact...and it works exceptionally well for me.  Remissions last over a year.  

Cellcept did something awful to my skin...all pasty white and wettish...yick.  

Hydroxychloroquine was ineffective, so dr tried chloroquine.  Result of that was sugar crash that lasted five days until I cleared the chloroquine out of my system.  

Imuran was completely ineffective for me.  I took 200mg per day for three months along with 60mg pred and 400mg hydroxychloroquine.  At that point, sed rate, crp, and antichromatin were out of sight and I looked like a monster.  So decision was to go for Cytoxan or rituximab.  

It was my decision to skip the toxicity of Cytoxan and go for ritux...in spite of the fact that it was being used only sporadically then for SLE and approved for nothing except lymphoma.  That was Spring of 2005.  

Oops.  I guess that is way more than how I did on steroids!    

[catzz]

Yikes - you sure have been around the block with the steroids and other meds!  AIP is supposed to respond to 1 or 2 6-12 wk runs of prednisone starting at 40 or 60 mg and weaning. Duration and dosage varies case to case, dr to dr. I believe it's 14% of patients with this (rare) condition who do not respond to pred and I have the misfortune of being in this group. Last Oct ended nearly 1 rotten year on and off pred - with my liver function tests spiking after each pred run.  I'm on azathioprine now which is used successfully with autoimmune hepatitis. Its efficacy with AIP is unknown as there are no completed studies, however is tried when prednisone fails. I've been in touch with a few AIP people in the autoimmune disease forum who have had good result with azathioprine. So far am doing well and my LFT numbers have been great. Yay.  Side effect-wise...  muscle and joint aches and pains, though the latter may be from arthritis sneaking up in recent yrs.  Some hair loss but not too bad + seems to have leveled off. Risky drug as it can cause pancreatic tumors.......   but so far better than being on miserable pred.     How did You do while on steroids???

[mumsy613]

How do your drs treat the pancreatitis?  My autoimmune problems respond to prednisone, but the dose is pretty high....60-80mg,,,and by the time I taper down to 20mg, the symptoms come back.  Over time, I have had 1000mg pulses of IV methylprednisilone, (seven infusions over seven months), 3000mg Cellcept, 200mg azathioprine, 400mg of hydroxychloroquine, and three rounds of rituximab.  The only treatment that has produced remission is rituximab.  I think the gastroenterologist wants to make sure nothing else (non-immune) is going on with the pancrease / liver before retreating with ritux.  But, that's a guess.  He is rather quiet, but nice.  Thank goodness for that.

Fran

[catzz]

ERCP not too bad if you ever need to have.  I had 4  (2 for scoping + stent placement, 2 for stent removal) also an EUS (endoscopic ultrasound) and was used to the routine after first one. Yep - got to know all the radiology techs and staff.  This was before dx of AIP and was being treated for common bile duct stricture - which is caused by AIP. Do you know what the scan was called that looked like flat-bed?   Also had gallbladder removed - which was a mess spewing sludge and contributing to the CBD obstruction, but its removal still didn't solve the problem as it wasn't the direct cause.

That's lousy about the hives from contrast.  CT-wise, my experience with abd CT was the berry-flavored miserable white horror drink beforehand.  After 2 sips, told nurse nope, wasn't going to happen, couldn't keep it down. She asked if I could hold down water.  Sure, no prob..  Turns out it comes in another format which is something tasteless and invisible added to water - but expensive so not initially offered!  Will ask for this in advance if ever need another abd CT.  

I used to enjoy wine with supper a few times a wk, but now just take a sip here and there from husband's glass as I don't want to push the envelope with an enlarged, odd-textured, slightly tender pancreas. I can eat pretty much anything but try not to overdo it. I do miss wine but remind myself that I'm fortunate (so far..) to be able to continue enjoying all my favorite foods.

Sandy

[mumsy613]

Duct obstruction has an interesting history...not.  Within three weeks (two hospital stays) I was scanned over and over.  They put me in what looked like a flat-bed scanner (body size)....very creepy.  Both hospitals did this.  I had one floating gallstone and that was the extent of visual pathology.  Ducts all looked normal back then.  In true American style, they covered their fannies by removing my perfectly fine gallbladder.  Grrrr.  Disposible organs.

Fran

[mumsy613]

Thanks, Sandy.  Good to know the direction seems right!  Hate the wait.  Never had ERCP....would like to avoid that one!  Had a CT lungs yesterday to monitor fibrosis and make sure there are no further clots...radiology techs know me way too well.  At least no contrast with this one....hives last time.  I guess that can be scored +.  Laughing.

Fran

[catzz]

Sounds like your docs are doing the right investigations, both the MRI and MRCP.  (Ever had ERCP?)   If they have further reason to suspect AIP, that's when IgG4 would be done to confirm. It's a fairly costly test and only done at certain labs. The treatment for AIP is prednisone which works on most patients, but not all. Hope they figure out soon what's going on.

Sandy

[mumsy613]

In progress.  Hepatologist repeated the tests then ordered MRI and MRCP(or something like that) which are scheduled for next week.  He is checking for autoimmune pancreatitis, but I didn't notice the IgG4 on the lab request.  I haven't seen the report yet...guess I could call and ask.  My abdomen is swelling up so badly now that I am sure I will have stretch marks.  I do have SLE with lung involvement and overlapping Sjogren's and Systemic Sclerosis.  So....would not be a surprise.  Boo hoo.  :(

Fran

[catzz]

Did your doc rule out autoimmune pancreatitis?  Have  you had bile duct obstruction at any point?   The diagnostic test for AIP is IgG4 (IgG subclasses). If you've had pancreatic probs and have other autoimmune disease(s), certainly worth checking out.

Sandy