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Sojourns disease and no saliva and new crowns adding to complications

Posted by bonnies1999 @bonnies1999, Feb 10 10:44am

Please my son diagnosed with Sojourns disease.
So uncomfortable with not producing saliva.
Also had 28 crowns put on in 2 days at dentist and now having nerve pain in teeth
Did this right before diagnosis. Bad decisions
What can he do to be comfortable and produce saliva?

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kjoeme1978 | @kjoeme1978 | Feb 12 12:36pm
In reply to @linda1976 "I had one crown removed and a new one put on and this happened to me...." + (show)
Profile picture for linda1976 @linda1976

I had one crown removed and a new one put on and this happened to me. I was tested for Sojourns disease, but they said I did not have it. I haven't produced saliva since that dental visit, 2 years ago. I've been back to that dentist over and over and also every kind of other dentist and specialist you can imagine. I had the crown replaced twice, finally to get an implant that was 11,000!!! Still nothing changed. I now wonder if I have BMS. I just don't know what to do!!!

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@linda1976 possibly OLP. I had a zirconia crown put in and 6 months later all these autoimmune type reactions dry mouth no taste tongue sore. Went on Plaquinil and got some relief after 6 months lips are the worse part. Numbness also. No specific autoimmune disease but do have positive ANA. So if you can find an Oral Medicine Dr I had two tongue biopsies. Only one in area at St. Louis university diagnosed my OLP. 20 drs of all specialties had no clue. Still very had to manage. Some things work for some and not others. Trials

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taylor05 | @taylor05 | Feb 12 1:32pm
In reply to @kiki393 "@taylor05 So sorry you have all this going on. It is very difficult to deal with..." + (show)
Profile picture for kiki393 @kiki393

@taylor05 So sorry you have all this going on. It is very difficult to deal with au

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@kiki393
Definitely a lot to deal with.. Right now my arm is healing and doing PT for a reversed replacement shoulder.. Major thing! It's my dominant arm too. From that surgery I got gas in left side lung and one lobe had deflated and my right has scarring now. This has been horrible to deal with. So much medicine!! Then hurting on top of it! Life can be a hard deal!!

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ebbm77 | @ebbm77 | Feb 15 2:49pm

I've had Sjogrens for 10+ years & have found many helpful things to treat & relieve my dry mouth symptoms. Oral Pilocarpine (Salagen) & Evoxac are two meds that stimulate your salivary glands & create saliva in your mouth. I use Oral Pilocarpine 5mg 2x daily as needed. It works so well at producing saliva that I can't use it before bed, b/c It makes me drool excessively!! Needless to say it works very well:-) I tried Evoxac, but it didn't help me as much to help alleviate my symptoms. The only side effect I've noticed is a little bit of queasiness but not enough to cause loss of appetite. It doesn't deter me from using the med, b/c it works so well. I also LOVE the Biotene products (toothpaste, mouthwash, throat losanges, & moisturizing sprays). They're available over the counter & help immensely. Also, please be aware that artificial sweeteners, cinnamon, tomatoes & tomato sauces (incl ketchup, & spicy foods can make dry mouth worse. They are common irritants for individuals with Sjogrens. I further try to eat foods with sauces & avoid things such as crackers & dry veggies. Cooked (or steamed veggies) are fine. I hope this helps your son feel better, & Sjogrens can be managed. It takes time, but things will improve:-)

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bonnies1999 | @bonnies1999 | Feb 15 7:58pm
In reply to @ebbm77 "I've had Sjogrens for 10+ years & have found many helpful things to treat & relieve..." + (show)
Profile picture for ebbm77 @ebbm77

I've had Sjogrens for 10+ years & have found many helpful things to treat & relieve my dry mouth symptoms. Oral Pilocarpine (Salagen) & Evoxac are two meds that stimulate your salivary glands & create saliva in your mouth. I use Oral Pilocarpine 5mg 2x daily as needed. It works so well at producing saliva that I can't use it before bed, b/c It makes me drool excessively!! Needless to say it works very well:-) I tried Evoxac, but it didn't help me as much to help alleviate my symptoms. The only side effect I've noticed is a little bit of queasiness but not enough to cause loss of appetite. It doesn't deter me from using the med, b/c it works so well. I also LOVE the Biotene products (toothpaste, mouthwash, throat losanges, & moisturizing sprays). They're available over the counter & help immensely. Also, please be aware that artificial sweeteners, cinnamon, tomatoes & tomato sauces (incl ketchup, & spicy foods can make dry mouth worse. They are common irritants for individuals with Sjogrens. I further try to eat foods with sauces & avoid things such as crackers & dry veggies. Cooked (or steamed veggies) are fine. I hope this helps your son feel better, & Sjogrens can be managed. It takes time, but things will improve:-)

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@ebbm77
Thank you so much for taking the time to educate us on this Newly diagnosed
Disease .
I will forward this info to my son.
He is reluctant to take all these new meds…a bit overwhelming but needs to see he’s not alone and will find something that helps.
I appreciate your response and your great attitude.
Please take care and many thanks.
Bonnie

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