03-16-2016, 05:20 AM   #1
SooBee's Avatar
Join Date: Oct 2013
Location: Bedford, United Kingdom

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Sjorgren's Syndrome

I've has Crohn's for 45 years. Had a second bowel resection a year ago, very successful.

I had been diagnosed a few years ago with degenerative spine, spodylolisthesis, acute osteo-arthritis of hips and knees. Had to wait for first hip replacement until my gastroenterologist had discharged me. In September I had an MRI scan and colonoscopy which showed some ulcers had returned at the site of both the previous resections. My consultant wanted to put me on Humira but agreed it could wait until I had the first hip replacement. (Still waiting for that. They now say, possibly May). Anyway, in the meantime I am in constant agony with sciatica, joint and muscle pain. I have to use a wheelchair because I can barely stand.

Went to my dentist yesterday and she says she thinks I have Sjorgren's Syndrome. She had another patient with it who was having trouble walking with the joint and muscle pain. When I looked Sjorgren's up, it only mentions dry mouth and eye which doesn't seem much to worry about! Anyone know if the Syndrome can cause other symptoms? Is it worth seeing my GP to diagnose to Sjorgren's?

The consultant who is doing my joint replacements, says I have osteo-arthritis but I have developed sore, red, swollen joints on a couple of fingers. Dentist said it looks more like rheumatoid to her. Does this go with the Sjorgren's?

Sorry to ramble on. I'm on azathioprine, salazopyrin, B12 injections, amyltriptiline, Zapain and Co-codamol.
03-16-2016, 06:29 AM   #2
my little penguin
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Have you seen a rheumotolgist ?
They would dx the sjogrens and spondyloarthritis associated with Ibd .
Once you have crohns - arthritis is spondyloarthritis associated with inflammatiry bowel disease and some progress to ankylosing spondyloarthritis .
Can you get a quick referral ( I know uk and time is general not a good thing )?

Sjogrens can cause a lot of things but generally dry mouth nasal cavities throat etc...
Which can be more than annoying
Ds was dx with sicca syndrome -similar but not sjogrens since he has no antibodies
Treatment - eye drops and sour candy
DS - -Crohn's -Stelara -mtx
03-16-2016, 06:30 AM   #3
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Join Date: Jan 2016
Location: Fiji
Sjogren's has, in the past, been a forerunner of other autoimmune problems, such as Lupus, RA, etc. That's probably why it should be checked out. It's like a symptom of something deeper.

More recently, it's been looked at as a malady all its own. Here's a good place to begin:
End Stage Severe Fistulizing Crohn's Disease (Diagnosed 40 years ago)
MS-like demyelinating disease (Humira induced brain lesions)
Spinal Stenosis cervical (with spinal cord flattening)
Spinal Stenosis lumbar
Severe Pulmonary Hypertension
Right heart failure
03-16-2016, 06:49 AM   #4
SooBee's Avatar
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Location: Bedford, United Kingdom

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Thanks for the links. Will study. I sometimes feel as though I'm banging my head on a brick wall. No-one seems to listen properly anymore!

My gastroenterologist told me the only time arthritis is indicated with Crohn's is in sacroilleitis, which at the time of my last MRI scan I did not have, 'just' the degenerative spinal arthritis and the spodylolisthesis.

It is very hard to get to see anyone
03-16-2016, 08:09 AM   #5
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Clash's Avatar
Here's a link for the extra intestinal manifestations(EIMs) of CD. It covers many of the joint EIMs as well as skin and eyes and others.

Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-16-2016, 08:42 AM   #6
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Cat-a-Tonic's Avatar
Join Date: May 2010
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My understanding of Sjogren's is that it can cause dryness anywhere in the body, not just the eyes and mouth. There was a girl in the Undiagnosed Club who has Sjogren's, and it was causing her some issues with her pancreas - essentially she said her pancreas "dried up" and she had to take pancreatic enzymes. I think it was starting to cause her some issues with at least one other organ as well. So it is something to be monitored for sure.

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