1. < Autoimmune Diseases

Maybe mild lupus, looking for diagnosis

Posted by dariffis @dariffis, Aug 10 12:12pm

Approximately three years ago, my Doctor prescribed Pantoprazole Sodium 40 mg, for an irritating dry cough. She diagnosed it as Silent Acid Reflux causing the cough. I then got severe diarrhea up to 5/6 times per day. After about three months, I went off the Pantoprazole, and the diarrhea slowed down but continued. My cough came back. Over the next few years I started taking up to 22 Psyllium tablets per day and that mitigated the diarrhea. I was prescribed Ranitidine 150 mg for the cough. I had numerous blood and stool tests, colonoscopy , Endoscopy, but nothing showed up. Within the last couple of months I have had UTI, and reoccurring Uveitis, which I use Prednisone drops to control the flare ups. I have had consultations with both a Gastroenterologist and an Internist but they could not find anything to diagnose. The Intenist advised that it resembles Lupus, but not enough to diagnose it as Lupus, and just continue with the prescriptions that I am on as they mitigate my symptoms.
I am a generally healthy 76 year old female, who is allergic to bee stings, wild mushrooms , and overall environmental allergies, ie. pollens, grasses, perfumes, animal dander, etc. I am also on 75 mg of Synthroid, and I take Amerge for occasional migraines.
I would like to know if anyone else has a similar condition, and how they manage it. Thank you.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Lara K | @larak | Aug 10 1:19pm

This could also be Behçet's with GI symptoms. It's hard to tease out from Crohn's.

Rheumatological conditions are just the pits because it takes years to get a diagnosis. I'm assuming your ANA test isn't positive?

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 10 5:18pm

@dariffis Welcome to Mayo Clinic Connect. I hope you’ll find and get involved with some good discussions here. Have you seen a rheumatologist? They are the ones who know autoimmune diseases best. How long have you been on the prednisone? Did the doctors say how you might have gotten uveitis?
Here are 2 discussions which might give you some more information.
https://connect.mayoclinic.org/discussion/lupus-not-lupus-lupus-not-lupus/
https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/
You could ask your questions there and will get answers! How are you feeling with your puzzling symptoms?

REPLY
1 reply
slkanowitz | @slkanowitz | Aug 12 1:39am

I am curious what made the internist think about lupus since it seems you consulted with him prior to the uveitis. This eye inflammation can be associated with many autoimmune disorders, and if your autoimmune blood tests were done over a year ago it would be worthwhile repeating them. Reflux and UTIs are extremely common. It’s the recurrent uveitis that makes one suspicious of an AI disease. I would make sure also that your stool tests included a fecal elastase level to check for exocrine pancreatic insufficiency,(EPI) which causes diarrhea. Chrohns and ulcerative colitis are 2 AI diseases that cause diarrhea and it’s worth getting tested again if the diarrhea is still a problem.
A consult with a rheumatologist would be helpful as they do the most thorough AI testing. I hope you get some answers soon!

REPLY
1 reply
Teri | @tsc | Aug 13 4:49pm

I had pain and stiffness from the neck down for over a year, gagging attacks, some visual disturbance, fatigue, then got a rash across my face. I also had a dry cough at night and scalp tenderness.
I thought I had lupus when the rash appeared, but a doctor friend told me I was too old for lupus. I was 70 at the time. He focused on Polymyalgia Rheumatica and Giant Cell Arteritis, and told me what blood tests to ask my PCP to order. My inflammation markers (CRP and ESR) were off the charts and I was positive for Giant Cell Arteritis. It turns out the rash on my face was shingles, a mild case, as I'd had the Shingrex vaccine.
I hope you get some answers soon.

REPLY
1 reply
dariffis | @dariffis | Aug 14 12:35pm
In reply to @larak "This could also be Behçet's with GI symptoms. It's hard to tease out from Crohn's. Rheumatological..." + (show)
@larak

This could also be Behçet's with GI symptoms. It's hard to tease out from Crohn's.

Rheumatological conditions are just the pits because it takes years to get a diagnosis. I'm assuming your ANA test isn't positive?

Jump to this post

All blood, urine, and stool tests are negative. Crohns, IBD, etc. we’re all ruled out. I do not have any mouth lesions or issues. I am going to request an appointment with a Rheumatologist, as that has been the suggestion in several replies to my query. I will post an update. Thank you for your interest.

REPLY
dariffis | @dariffis | Aug 14 12:42pm
In reply to @slkanowitz "I am curious what made the internist think about lupus since it seems you consulted with..." + (show)
@slkanowitz

I am curious what made the internist think about lupus since it seems you consulted with him prior to the uveitis. This eye inflammation can be associated with many autoimmune disorders, and if your autoimmune blood tests were done over a year ago it would be worthwhile repeating them. Reflux and UTIs are extremely common. It’s the recurrent uveitis that makes one suspicious of an AI disease. I would make sure also that your stool tests included a fecal elastase level to check for exocrine pancreatic insufficiency,(EPI) which causes diarrhea. Chrohns and ulcerative colitis are 2 AI diseases that cause diarrhea and it’s worth getting tested again if the diarrhea is still a problem.
A consult with a rheumatologist would be helpful as they do the most thorough AI testing. I hope you get some answers soon!

Jump to this post

Thank you for your reply. All my blood, urine, and stool tests are current and all negative. The uveitis popped up between my initial referral to the Internist and my first appointment with him. Your reply along with others, suggested a rheumatologist consultation, and that is the route I am going to take. I will request a consultation with one, and will give an update. I appreciate all the feedback. Thank you.

REPLY
dariffis | @dariffis | Aug 14 12:45pm
In reply to @siosal "Mold exposure?" + (show)
@siosal

Mold exposure?

Jump to this post

Mold exposure is not a possibility. I will be requesting a consult with a rheumatologist, and will give update. Thank you for your interest.

REPLY
dariffis | @dariffis | Aug 14 12:48pm
In reply to @becsbuddy "@dariffis Welcome to Mayo Clinic Connect. I hope you’ll find and get involved with some good..." + (show)
@becsbuddy

@dariffis Welcome to Mayo Clinic Connect. I hope you’ll find and get involved with some good discussions here. Have you seen a rheumatologist? They are the ones who know autoimmune diseases best. How long have you been on the prednisone? Did the doctors say how you might have gotten uveitis?
Here are 2 discussions which might give you some more information.
https://connect.mayoclinic.org/discussion/lupus-not-lupus-lupus-not-lupus/
https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/
You could ask your questions there and will get answers! How are you feeling with your puzzling symptoms?

Jump to this post

Thank you for the links to the discussion groups. I am taking the advice of the majority of responses to my query, which was to consult with a rheumatologist. I will update once I have had a consultation. Thank you for your interest.

REPLY
dariffis | @dariffis | Aug 14 12:52pm
In reply to @tsc "I had pain and stiffness from the neck down for over a year, gagging attacks, some..." + (show)
@tsc

I had pain and stiffness from the neck down for over a year, gagging attacks, some visual disturbance, fatigue, then got a rash across my face. I also had a dry cough at night and scalp tenderness.
I thought I had lupus when the rash appeared, but a doctor friend told me I was too old for lupus. I was 70 at the time. He focused on Polymyalgia Rheumatica and Giant Cell Arteritis, and told me what blood tests to ask my PCP to order. My inflammation markers (CRP and ESR) were off the charts and I was positive for Giant Cell Arteritis. It turns out the rash on my face was shingles, a mild case, as I'd had the Shingrex vaccine.
I hope you get some answers soon.

Jump to this post

I also have had the Shingrex vaccine. My symptoms are different than yours, but I am glad you got a diagnosis. I am going to request a consultation with a rheumatologist, and will post the results. Thank you for your interest.

REPLY
Please sign in or register to post a reply.