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Sjogren's Syndrome
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Posted 5/20/2015 4:11 AM (GMT 0)
Hello everyone,

After a long day full of emotional and bouts of crying, I have come to terms with my diagnosis. I'm so blessed to have fround a Rheumatologist that from the 1st Day of my appt she had a suspicion what was wrong with me, by reviewing my records, asking questions, looking at pic's I took to show her my swelling and she examine me from head to toe, and right there she said "I think I know what's wrong with you, I believe you have Sjogrens" She sent me to have blood work. I went back to her she said it was inclusive, so she gave me a Rx for vitamin B12, vitamin D2 , prednisone and gabapentin and untill I went for my Biopsy.. fast forward
I got a call from the ENT to inform me that my test results is possitive for Sjogrens..
** This is my 3rd Rheumatologist and 2 Nuerologist later!,

What's next? New med's,? Which meds should I avoid?
What things should I avoid? Anyone having chest pains?

I'm glad I found this forum! I don't feel alone.. I feel hopefull that I can get good advice. From people who are going through the same struggles I am.
I hope to hear form fellow Sjogies

With warm regards, Diana
Posted 5/20/2015 1:19 PM (GMT 0)
Diana, I replied to your reply on the lip biopsy and then saw this. I am so glad you found a good rheumatologist. It's quite the journey, isn't it??? Whew!!!!!! I had seen a few rheumies, they all thought something was wrong, but didn't know what. A Dr. at Mayo clinic thought I had RA and my x rays just turned positive for that too-:)

I think everyone is different with medications. They often start you on plaquenil. There is a rare side effect, very rare of some eye damage, so get your eyes checked at least once a year. It's a good medication but takes a long time for you to get results. For me, it happened pretty quickly though, so that was a blessing. It helps the fatigue and joint pain. They sometimes put you on a med like Exovac for the dryness. I have a script and will start taking that tonight. I highly recommend if you still have your teeth to get on a prescription toothpaste with high fluoride to keep from getting so many cavities, root canals ets..... My dentist did that for me and it was a blessing!

Some people with sjogrens are sun sensitive. You might know by now if that is you. It can cause a flare.
I've had costochondritis that caused chest pain. Did you get your chest pain checked out with your Dr?
Oh, I also use saline nasal spray for the dry nose.
Hope this helps.
Posted 5/20/2015 8:31 PM (GMT 0)
Dear: Jeanneac,
Im glad you mentioned Chest pains.. Boy do I get them, and have been to my Pcp, Cardio Doctor and to the Er a number of times thinking I was having a heart attack, Its an on going issue. Before my diagnosis for Sjogrens my PCP said I had costochondrtis, and at the time that's, When he said he wnted me to see a Nuerologist, becuase he thought I might have MS. Well Ive been test by two Nuerologist I do not have it!, I have to see my Rheumatologist next week I will tell her about it and see what she recommends.

Thank you so much for your respond, and being so helpful. You are so sweet.
I appropriate you!, its great knowing im not alone.

Stay in touch. Thanks again Diana
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