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Sleepless with Sjogren's

Q: I have had Sjogren's Syndrome for at least 8 years now and have had insomnia for
most of those years.  Is sleeplessness a true symptom of SJS even when you are
not in a flare?  Ambien helps me, but my primary doctor doesn't want me on it
anymore.  I tried telling her that I believe it is a symptom of SJS, but she
does not agree.  I'd love to know your thoughts on this matter.

A: Insomnia does seem to be a problem for many with Autoimmune Diseases, particularly Sjogren's.  Multiple things can affect ones sleep pattern, like very dry upper airways, so it is hard to design a research study that would focus on one variable like brain specific source of the insomnia.

Information you may find helpful is included in a blog post by a Sjogren's patient on Sjogren's and Sleep:
Also if you go to www.sjogrens.org, the foundation staff may be able to point you to a previous article in the Moisture Seekers newsletter or the Sjogren's Quarterly that has dealt with Insomnia.

I agree that if you never had insomnia before the Sjogren's began, then it does suggest a possible association. Research is needed in this area - as improved sleep would be beneficial.

Any of the prescription sleeping meds can be drying.

Ambien is particularly hard to get off of. A very slow taper is needed to prevent a rebound of insomnia or worse insomnia.

dr c

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