Sjogren's Syndrome & Rheumatoid question

Question

Hi!  I found out about a year ago that I have Sjogren's Syndrome, I was referred to a rheumatologist, and put on Plaquenil for a year, constantly upping my doses hoping to see a difference.  Everytime I have gone there he has mentioned that my symptoms point more to Rheumatoid Arthritis, which is also what I told him after some personal research; but he constantly tells me that I dont have that because my bloodwork was negative for that?????  Is that not something that you can have that sometimes doesnt show up in bloodwork?????  My joint pain, and stiffness are MISERABLE, along with the dry mouth, dry nose, the dry eyes part has started bothering me recently.  

I also have these spells with my stomach that have been going on since I was in middle school.  It starts with the AWFUL rotten egg burp, MISERABLE bloating, gas, and followed up with vomiting until my stomach is COMPLETELY empty and I am dry heaving.  When I do this, I can throw up things I have eaten 3-4 days prior, and when I move, I literally feel everything in my stomach slosh around!!!  It is AWFUL!!!!  Could this possibly be related???  Could this mean that the Sjogren's has been affecting my stomach???  I have been readind up Gastroparesis, and that sounds like EXACTLY what I have been experiencing!!!!  Could that be caused by these auto immune disorders????????  

I know this message is ALLLLL crazy and everywhere ... but I am sooo tired of going thru all of this, and just wondering if anyone else is going thru the same things in life!!!  THANKS in advance!!!  :-(

AthenaSB · Answer

Re: sjogrens

I have had RA and Sjogrens for many years.  Yes, you can have RA and also have negative blood work, called sero-negative RA.  That accounts for about 20-30% of RA patients.  Not all bloodwork works for all people.  In those cases, the doc will rely on exam and symptoms to diagnose and it can take a while.

BUT, if you had PRIMARY Sjogrens... that comes with joint pain that often mimics RA, so its possible that it could be the case too.  Something to ask about.  I have secondary sjogrens... as in secondary to RA.  I have two good books on Sjogrens and have learned about the primary vs. secondary and its a possibility to have primary and have that similar joint pain.

Sjogrens *****... its hard to deal with the dryness, but with meds and eyedrops, it can be managed.  I use Salagen and Blink eyedrops. 

Good luck.

kjelltp · Answer

A lot of these problems maybe be BECAUSE of your GI troubles. Stay on organic veggies, cut back on animal protein, stay off the usual big 3 (sugar, white menace (flour/gluten), diary products). Take good probiotics and good supplements (most of us with AI probs need high amounts, due to GI problems and absorption issues). Find yourself a good ND to be your coach for natural healing protocols... and yes, millions are going through these problems. Autoimmune is the new epidemic (read the book by Donna Jackson for starters...)

AireScottie · Answer

Yes, gastroparesis can be caused by autoimmune diseases.  Actually, autoimmune diseases can cause peripheral neuropathy and kill off your autonomic nerves, which control food moving through your stomach.  Here's the MedHelp page on PN:
http://www.medhelp.org/medical-information/show/74

You can get a gastric emptying test done to confirm that.  I have to disagree with Karajo on the fiber or Metamucil.  My gastroenterologist said absolutely NO fiber, as that's even more difficult for the stomach to process.  It was true in my case.  My symptoms have improved drastically by avoiding high fiber and cooking and pureeing fruits and veggies.  But get tested, and discuss it with a gastroenterologist if you have it.  There are a number of things to avoid, like fat, spices, and fiber, so it's a really strange diet, and everyone can tolerate different amounts of each.

Some rheumies are willing to X-ray your joints to look for joint deterioration, and will diagnose RA based on that.  It is also possible to have severe joint pain and swelling (but not deterioration) from Sjogren's.  I had terrible joint pain, but luckily am getting some relief from Plaquenil.  My mom also has Sjogren's and has joint swelling but no joint deterioration.

karajo · Answer

Hi and welcome to MedHelp.

I can answer your question about the rotten egg taste, undigested food thing.  I used to get that.  And it is pretty much what you think it is.  Your food is not being processed efficiently.  I started taking a fiber pill.  Either that or some Medimucil.  Drink plenty of water.  

Mine was not followed-up with throwing up, but w/ diarrhea.  If you have that plesant side effect, you could try Slippery Elm for the diarrhea.

Now about the rheumatoid arthritis.  A friend of mine had trouble w/ that for years and had a hard time getting dx because her RA factor was always normal.  She finally showed up at the drs. office when her fingers were all swollen.  Does your joints swell - a lot?  And you could have more than one thing going on.  Autoimmune disorders sometimes travel in pairs.  How did they dx the Sjorgren's?