Dry mouth relapsing remitting?

[stevemor909]

I asked this kinda before but in a roundabout way.  So here goes again, with Sjogrens Syndrome can the symptoms of dry mouth be relapsing and remitting?  This seems to be what is happening to me, I started with several weeks of unbearable dry mouth followed by a week when it eased off, than it came back again strong, than for a few weeks seem to be gone or barely noticeable (perhaps only at night) only to again return.  My mouth is like the desert again!  My doctor has suspected  Sjogrens but because of the lack of insurance & $ I havent gotten the next tests done yet.  DOES THIS DISEASE come and go like that symptomatically? 

Thank you for your response!

[Katybarstool]

Hi Steve

Yes, I think it can! SOmetimes my mouth is as dry as a desert, other times it's so much better. Wondr whetheer eating different foods has an effect?

Kathyx

[Seeker]

Howdy stevemor.  With Sjogren's, symptoms can come and go.  Ask any one of us if we have symptom flairs and I think you will get a near 100% yes.  What brings our symptoms  on or causes them to seem to go away, who knows?  So I don't think it's surprising that your dry mouth comes and go's.  Anyway I hope you will get your answers soon.  Hang in there.

Seeker

[CAT1962]

I think so! I know MY dry mouth goes from plenty of saliva to my tongue feeling cracked, and my throat so dry I can't talk long, and have to have a drink by me 24/7. I have Primary SjS.

[Daisy1234]

I have primary sjs.  In the earlier days before the Sjs became severe, I would go thru periods of having little to no saliva and then periods where I had saliva without requiring meds or other artificial intervention.  For me that was when the disease was at its mild stage. 

Now I have no saliva, my glands don't produce any at all and unless I constant wet my mouth with water, I quickly lose the ability to speak or swallow and my tongue looks like dry sandpaper.  I haven't had any saliva for a few years now.  However my rheumy has told me that the disease will wax and wane and in many of her sjs patients it can even go into complete remission.  Unfortunately for me, that has not be the case but she assures me that she has seen that happen for many many of her Sjs patients.

[deeindiana]

You are describing my symptoms too. The mouth dryness/pain waxes and wanes. There's always an underlaying dryness, but sometimes it feels almost normal. Then there are times when I'm uncomfortable and feel sorry for myself...until a really, really, really bad flare hits and then I remember what miserable really is.

I've never figured out if the flares come on by themselves or if something triggers it.
I have been diagnosis with primary SjS.
Deb

[stephL]

I was surprised when the dentist told me my mouth was dry. I wasn't having severe problems and I guess I had just gradually gotten used to having less saliva. It was my normal. The dryness has gotten worse over the years but I still get some days here and there where I have more saliva than usual.

[dbab]

stephL, I didn't realize I had a dry mouth either until my doc put a tongue depressor on the side of my mouth and held it there for a moment and said I wasn't pooling any saliva on the bottom of my mouth (under my tongue).  I guess that (pooling saliva) is a normal reaction for people without dry mouth.  I still don't feel that my mouth is unusually dry on most days -I do have my days though, and sometimes cannot eat 'dry' foods' but our normal is different than other people's normals I guess

[CAT1962]

Throwing in 2 things:

For some strange reason I have excess saliva today. I'm sure it will be gone by tomorrow. 

And, SjS reminds me of a popular and old saying my dad would constantly run by me.

"If spit was a nickle a bucket, I wouldn't be able to wet my lips!"