[SoCalEric]

My GP called me Thursday. Always worries me when the Doc. calls me! I've been complaining of low appetite (I've lost around 20lbs.), abdominal pain, diarhea and other things for quite awhile. As he put it, my blood tests finally match up with a possible explanation for my troubles. Guess my Pancreas looks a bit odd, or something came back on the blood pointing to it. Went in for an ultrasound on the Pancreas Friday and going to a Gastrologist Tuesday, I'll get the results then. I've got a long history of Lupus Nephritis.
Anybody got any info on this/had troubles with their Pancreas? Going to call my Rumy on Monday and get in to see him as I imagine this could be Lupus rearing it's ugly head in a new way with me. Don't really need the Doc. bills right now but I'll deal with that down the road. Right now I'd just like to want to eat again!

-Eric

 

[KarolH]

Hi Eric,

I have not had problems with my Pancreas yet my husband has been through He** with pancreatic problems. Long story short, he had a bout of pancreatitis so bad that he lost half his pancreas, his spleen and gall bladder too. My heart goes out to you as I know first hand how sick you can get when the pancreas decides it does not want to be your friend.

I can only assume that your Amalyse and Lipase numbers came back abnormal in your blood test results. Do you drink a lot of alcohol? If not, get ready for them to ask you if you do because typically alcoholics tend to get bouts of pancreatitis pretty often.

I am sorry your dealing with this issue as it is painful and can be horrible. Please let us know how you get along after you go to the Gastroenterologist. I wish you luck with your upcoming appointment and if your able, get a copy of the blood test results for your records.:wink2:

 

[Lily]

Hi Eric

I'm sorry you haven't been feeling to well lately, it seems they are onto it though. Good luck with your appt. and let us know how you get along.

If it is pancreatitis related to lupus, it's quite rare, but then that never stopped any of us doing something rare did it

Here's a bit of info on it from the LFA which you might have already seen.

http://www.lupus.org/webmodules/web...w_healtharticles.aspx?articleid=461&zoneid=29

A search of the site might reveal some in our past who have had this. I do remember one lady but at the time she didn't have a lupus diagnosis but they were pursuing that as a possible cause considering some of her other presenting symptoms.

Do you have other signs of a flare Eric?

love
Lily

 

[Zoi]

Hey Eric,

I've gone through two bouts of lupus pancreatitis, the first was pretty mild with bearable pain, a bit of weight loss and an increase in the lypase, amylase values and the second was pretty serious with unbearable abdominal pain that radiated to my back, weight loss, constant nausea and fever... It wasn't a fun experience at all....

Are you on cytoxan at the moment Eric?

I was on monthly pulses of cytoxan and steroids at the time (and got my iv cytoxan with lots of extra iv steroids that month for the pancreatitis) but even though I had very bad pancreatic inflammation, I went back to eating ice-cream and crisps and to my regular weight within a couple of months, with no lasting damage to my pancreas...!

Calling your rheumatologist sounds like a very good plan! Hope your appointment with the gastrologist goes well and that you get to the bottom of what's going on soon!

Zoi

 

[Clare.T]

Dear Eric

I am sorry you are so unwell and have this new concern. I hope they can soon find out what's going on and get you better very soon.

Good Luck and Hugs
Clare

 

[cemc]

There is an autoimmune pancreatitis, which appears in people with family histories of autoimmune disorders, so i guess you could have that as well as lupus.

 

[SoCalEric]

Thanks for all the replys. I'm not doing Cytoxan now, haven't in over 2 years, and my Nephrologist says he doesn't want to give it to me again, ever, says I've had enough.
My Creatinine has risen some, last test was 1.54 two weeks ago. GP wasn't really concerned yet, but it has gone up, sooooo I'll probably make an appt. to see my Neph. also. He'll probably want another 24hr urine.
Guess that's one advantage to being recently laid off...I got plenty of time to call Docs. and go to appts.! My GP gave me copies of the labs he had and I gave them to my wife to make me some more copies at work today. Still feeling pretty bad today, very upset gut, sore lower back, nasuia, no appetite. Think I'll just be lazy and watch a movie with my dogs....they love me being home all the time, but I'm getting a little stir crazy.

-Eric

 

[Lily]

((((((((((((((((Eric))))))))))))))

I'm glad you got copies and are going to follow up with your docs on this. As you say at least you have time to sort out and attend appt's etc.

Your pooches will be happy to have you home I know you must be feeling very frustrated though, especially if your feel lousy and can't even do much around the house. A few DVD's never hurt anyone though

Hope you feel better soon :yes:

love
Lily

 

[KarolH]

Eric,

I know what you mean about going stir crazy being at home. Being home all of the time is the pits. Just work on getting better and enjoy the time with your wife and the dogs.

My dog loves me being home too.:wink2:

 

[Blackhawk]

(((((((((((((((((((((((((((((((Eric)))))))))))))))))))))))))

I know what ur going through I have autoimmune "chronic" pancreatitis which flares every couple of months & hurts like ****.When it flares up really badly I end up having to have one of my medics come over & start an IV on me for fluids because anything u eat & drink makes it worse & hurt more.Usually the flares last from 24hrs-72hrs.Most of the time if I just don't eat anything for that time then it goes away on it's on but when it doesn't that's when I get them to "hook me up".:hehe: Your doc might end up putting u in the hospital to start u on an IV & IV pain meds to make u feel better.Hopefully this will be the only time u have to think about having this & won't have to put up w/it for long.

I hope that ur doc appointments go well & that u will be feeling better soon.You will be in my thoughts & prayers.Feel Better soon!!!

 

[aitch]

Anybody got any info on this/had troubles with their Pancreas?

Hi Eric
I'm sorry to hear you're having so much trouble with your Pancreas.
I was diagnosed with Lupus in August 07 and at the same time they found problems with my Pancreas - I didn't have any pancreatitus symptoms, but happened to mention a lumpy swelling that I'd felt in my abdomen.
A scan revealed a cystic mass on the head of my pancreas.
Long story after that which culminated in my having a pancreaticoduodenectomy 6 months ago. Fully recovered from that now and the cystic mass they removed (along with the head of the pancreas & numerous other bits!) was totally benign.
They still don't know whether or not it was the Lupus that caused the pancreas problem, or whether it was the pancreatic cyst which was driving the Lupus, but they think it too much of a coincidence for there to be no connection.

I hope they soon figure out what's causing your problems & that they can sort it for you.
Good luck

 

[LupusLyn]

Hi Eric,

Aboout eight years ago I started having very bad stomach pain, started having everything I ate go through me, lost 35 pounds over eight months time.

I finally was dx. with pancreatitis. I eventually ended up in the hospital with acute pancreatitis and all food and drink was taken away for a week to give my pancreas time to rest. Then they put me on fluids for a few days and then back to solids. While I had the acute pancreatitis there was no drug that could make me comfortable. I was given plenty! After that episode, I knew when a pancreas flare was coming and would go the ER before I was in an acute flare. They would admit me for a few days while it calmed down.

One thing you can do to help is eliminate all fats from your diet. It always helps me. When you are in a lot of pain and it's acting up, try drinking only clear fluids for a few days to give your pancreas a rest. :blink:

I ended up going to Indianapolis to a Dr. who specialized in the pancreas and procedures to open the ducts that come from the pancreas to your bile ducts and into the stomach. That helped a lot the first time, the second time it did nothing.

My pain continued to linger, so then I was given a nerve block by endoscip ultrasound in the nerves that are at the head of the pancreas. That helped so much and lasted for three months. I was able to go off my narcotics during that time. I ended up having that done four more times before they told me that it was not safe to do it anymore.

I was also told that because of having pancreas trouble for so long that the nerves became so inflammed they would not shut off anymore even though my pancreas had finally calmed down.

I still get pain in my side and back sometimes but, as most of us on this site, have learned to live with the pain.

Now that I look back, after being dx. with Lups, Fibro., and other things, I think that it was all from Lupus, even though I didn't know I had it then. There are many things I can blame on Lupus when I look back now that I know that I have it.

I sincerely hope that you will get to the bottom of this and start to feel better. Pancreas pain is the worst kind of pain there is. My hudband asked my Dr. what people did to cope before modern medicine was able to help people with this problem. hno: He told him that they didn't cope, they ended up committing suicide. I can see why!

Best wishes,

Lyn