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pancreatitis and lupus????

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Posted 2/18/2010 6:58 PM (GMT 0)
hi everyone!

I have had some realllly weird stuff going on lately and my research has brought me to this..i am 19 years old and was diagnosed with severe chronic pancreatitis about a year ago. all causes have been ruled out except an autoimmune disease and possibly my birth control couldve caused it. Anyway, for about 2 months at a time i will have these really annoying joint and muscle pains mostly in my knees, hips, elbows, and sacral area. When I'm lying in bed at night the parts that hurt will feel warm against the sheets. Also, this past weekend I've been getting this really weird sunburn-like rash on my cheeks, nose, chest, and arms that feels really hot. I'm wondering if maybe this is a lupus rash??? also, my urine really smells awful!!!! I just have a lot of werid stuff going on and I'm wondering if anyone else gets pancreatitis from their lupus. I've also looked into sjogren's symdrome and also have many symptoms there too like a dry mouth. I have some cousins with lupus, but nobody in my immediate family...but then again I'm the only person in my family with pancreatitis haha.  anyway, if anyone else has pancreatitis from lupus please let me know! thanks!

Posted 2/18/2010 7:09 PM (GMT 0)
oh, i forgot to mention that i have been running a low grade fever constantly for about 2 weeks now. usually around 99.9. I have also been getting many headaches and feel like i just can't remember anything. thanks
Posted 2/19/2010 5:35 AM (GMT 0)
Hi and welcome to the forum! I'm sorry about the circumstances that bring you here though!

I have never had pancreatitis but I just typed "pancreatitis lupus" into Google and the following helpful links came up:

Involvement of the Pancreas in Lupus

Medical Journal Review Article on Lupus Pancreatitis (PDF)

There were lots more, but the bottom line seems to be that yes, pancreatitis CAN be the first symptom of lupus, and it can be extremely serious. But only a doctor can diagnose you.

Your other symptoms sound very lupus-y as well...please make an appointment with your doctor as soon as possible and discuss these things! If you think it will help, print out some of these articles, above.

If your doctor will not listen to your concerns and brushes you off, see another doctor. This is VERY important. When I was nineteen I wasn't able to stick up for myself as I can now (I'm 54). Maybe you're pushier than I was, LOL! I hope so! :)

You must find a doctor who will listen to you and help you get to the bottom of your medical mystery.

Good luck!! Please let us know how you are doing.....you are so young to be having to deal with these things. My heart goes out to you....

JoAnn
Posted 2/19/2010 6:46 AM (GMT 0)
Hi Blond_Ambition. Welcome to the forum. JoAnn just gave you some excellent advice and the only thing I have to add is that the doctor you should see is a Rheumatologist. Sometimes it takes months to get in to see a good one, so don't wait to schedule an appointment. If you don't already have a Rheumy, your family doctor should be able to refer you to someone. That helps get you in sooner.

Please let us know how you do and what you learn from the doctor. I hope you can get treatment soon.

Pat
Posted 2/22/2010 5:20 PM (GMT 0)

hey guys!

thanks so much for the advice! my blood tests came back yesterday and EVERYTHING was normal. im starting to feel crazy. My CBC was even normal which rules out an infetion causing my low grade fever. BUT to my understanding so far, just one negative lupus test doesnt mean you DONT have it for sure right? Another interesting thing...today my anatomy and physiology teacher came up to me to talk about my pancreas. She was unaware that i was being tested for lupus. She told me she saw my rash the other day in class and told me i should get tested for lupus because she was positive it was a lupus rash. Soi told her i had blood tests and they were fine and she told me lupus is big in her family and most of her family took years to get a positive test and that my rash was definately a lupus rash in her opinion. I'm so confused. I have several people urging me that its lupus but my tests are fine. Anyway, my mom is going to call my doctor today and see if he recommends a rheumatologist. I'm still just so stressed about it though. I really appreciated the articles also! this line really stood out to me too....

"Abnormal liver function tests and hypoalbuminemia are commonly seen in lupus-associated pancreatitis."

I'm honestly not sure about the hypoalbuminemia part, but i know for sure my liver was enlarged while i was in the hospital and some tests came back abnormal, but not much was thought about it. i also have clotting for sure in my splenic vein. Thaks so much for the articles!

     

Posted 2/23/2010 9:18 PM (GMT 0)

blonde_ambition said...

thanks so much for the advice! my blood tests came back yesterday and EVERYTHING was normal. im starting to feel crazy. My CBC was even normal which rules out an infetion causing my low grade fever. BUT to my understanding so far, just one negative lupus test doesnt mean you DONT have it for sure right?

That's absolutely correct! There's clearly SOMETHING wrong with you since you have all of these symptoms and sometimes it does take a while (months or even years) to get a firm diagnosis. So it's very important to keep pushing!

blonde_ambition said...
Another interesting thing...today my anatomy and physiology teacher came up to me to talk about my pancreas. She was unaware that i was being tested for lupus. She told me she saw my rash the other day in class and told me i should get tested for lupus because she was positive it was a lupus rash. Soi told her i had blood tests and they were fine and she told me lupus is big in her family and most of her family took years to get a positive test and that my rash was definately a lupus rash in her opinion.

Get someone to take a picture of you with your lupus rash. It might be good to have more than one pic taken on different days. Sometimes it's important to have pictures because you may not necessarily have the rash at the time of your doctor's appt.

Good luck! We're all pulling for you...please keep us posted!
Posted 2/24/2010 3:04 AM (GMT 0)
Hi and welcome! I just wanted to add that I went through a bout of pancreatitis last year. My amylase (sp) or whatever the enzyme is was off and I was experiencing pain. After a lot of tests, it was determined that it was lupus induced and I took a steroid "kick start" to get it under control. Hope you feel better!
Posted 2/24/2010 5:47 AM (GMT 0)
Blond_Ambition,

It took years of feeling bad, fevers, the butterfly facial rash, joint pain, and fatigue and three rheumies before I was diagnosed. I believe that two things are important during this time in your life. One is a rheumatologist who will listen and talk to you. Don't focus on a dx, but keep him or her updated on your symptoms and hopefully you'll be given some kind of treatment such as plaquenil even before you're diagnosed.

And second, you need a good support group. I find this group to be a good one for me and it was particularly helpful when I was the sickest. I've learned so much, and reaching out to others and sharing, learning, being able to vent with people who really understand what you're going through, was a lifeline for me. There are people of all ages here and many of us have been around for several years. I also talk to a therapist on a regular basis.

You'll find what's right for you, but it can be a very frustrating journey. We're here for you, and I hope you hang around.

(((Hugs)))

Pat
Posted 2/24/2010 5:47 PM (GMT 0)
thanks so much..this is making me feel a lot better because i know i was experiencing something and hearing your stories makes me feel like im not crazy or just a whiner after all. The reason I'm pushing this so hard is because i lost almost half my pancreas and have other damages caused from that bout and a reason was never found. I feel like if i can find a reason i can help prevent it since you kinda need your pancreas haha.
Posted 3/23/2010 5:58 AM (GMT 0)
Oh my gosh, I have been going through the SAME thing with my pancreas and I suspect lupus. Have you found anything out at this point?

Here is my brief story

2 yrs ago started to get stabbing/burning deep pains that migrated--mainly small joints lasting seconds to hours, muscle twitching all over, pain behind my eye, and also developed horizontal ridges and lines on all my nails-still have them. Had MRI, tons of labs, emg-clear

1 yr ago I was dx'd with mild pancreatitis--the pain continues on and off, all scans have been clear however showing no big inflammation or anything sinister (my dad died of pancreatic cancer, so I have been monitored close)

Last summer I got a livedo reticulorous rash on my thighs, get it sometimes when I get out of the shower too-like a spider web cast on my thighs

Had a bunch of lupus tests 1 1/2 yrs ago but all was clear

I do have Reynauds.


Does this sound like lupus? I get odd random pains all over my body...it is very bizarre, lots of stinging pains too

Posted 12/9/2010 8:09 AM (GMT 0)
Hi i have had pancreatitis 5 times and its chronic to but its unknown why and i have had the million dollar workup but honetly those pains are nerve pains when your pancreas is inflamed the nerves go into your legs chest all that the pancreas actually inflames them everytime i am about to have an attack my knees hurt like hell and i get bad heartburn i hope this helped and i learned this out froma pain doc
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