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Suspected Sjogrens - Need Advice!

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natasha52977
natasha52977

Hello, I'm a 42-year old female with suspected Sjogrens looking for advice. I have developed increasingly dry mouth, sinuses and eyes since a period of high work stress in 2020 that culminated in me developing severe bruxism (tooth grinding). While treating my Bruxism I had two sets of Botox shots into my masseter muscles (75 units total, off-label use) to try and weaken my jaw muscles.

Almost immediately after the second set of shots my mouth slowly started becoming very dry. First week or two it was just mildly dry, then a month later I realized I couldn't go anywhere without a bottle of water.

Today, over 3 months after getting my last Botox shot, I have almost no saliva production at all. Eating is a challenge, I can't talk for long without getting hoarse, and I have to take industrial-strength sleeping pills in order to sleep for even a couple of hours (I average 2 hours a night on a good night).

I have to endlessly chew gum and sip water all day or my mouth feels like the desert. I rotate between Salagen and Evoxac at night but they only work for an hour before the dry mouth comes back and I wake up.

I have consulted with numerous dentists, orthodontists and oral surgeons, who all tell me that if Botox was directly causing the dry mouth the effects would have worn off by now. I met with a new rheumatologist last week who told me that there is a chance that the 'foreign' Botox shots trigged my immune system to attack my glands which has resulted in the development of Sjogrens.

I have had multiple blood tests and have negative results for ANA, SS-A, SS-B, HIC, Hep-C, Thyroid function, Diabetes, and RI/RH, and my nutritional workup revealed no deficiencies such as D or B12. The doctor says negative tests don't mean I don't have Sjogrens and said I should get re-tested in 6 months.

My questions:

  1. Has anyone heard of Sjogrens being triggered by Botox, or other types of dental shots?

  2. Are there any other tests that I should do to rule out other (non-Sjogrens) causes of my symptoms?

  3. If this is Sjogrens, are there any new/experimental operations or treatments that can restore saliva gland function? (Links appreciated!)

  4. I want to avoid the lip biopsy as my mouth is so dry the cut would never heal. Is a saliva gland ultrasound comparable and where would I get one?

  5. Many people on this board mention that their Sjogrens sometimes goes into remission. Does this mean that their dry mouth goes away during this time, or is the dry mouth permanent?

THANK YOU everyone who read this super long post.... truly appreciate your time. This condition has turned me from a fit and healthy outdoor sports enthusiast to being a virtually housebound, sleep-deprived zombie... any and all help, thoughts, or advice would be massively appreciated.

Big hugs to everyone who is dealing with this condition. XXX

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