Sjogren's Syndrrome Reactional Tears

[laine]

For BennyBoy,
Yes Sjogren's can effect the meibomian glands. I have had SJ for 6 years and one of the first things I noticed was inflammed glands along my lash lines. Interesting that you find a gluten free diet to help. I have not tried this. I get tears when I cry and when I yawn but not many at any other times. My schirmer's test showed that I didn't produce any tears!
I have found that Salagen helps with getting tears flowing. They work best when taking about three 5mg pills a day and you have to experiment with how much water you drink. Too little water can cause you to have nausea and sweats and chills whereas too much water can reduce the effectiveness of the medication. This is what happens for me anyway. I would definately suggest trying salagen. Oh and also try to have something in your stomach before taking it.
Elaine

[Danny_]

Danny, when I read this post previously, I was going to write a blurb about the lip biopsy, but didn't. Lest I scare someone from not having the test. But, now that you've already decided not to............

I had a lip biopsy done last July. My lower lip is still numb as is the lower quadrant of the lower lip down to the gumline. Not everyone has this experience for sure, but from a Sjogrens board there are several besides me who have had this happen. My bloodwork is positive and if I had it to do over, I'd never have the lip biopsy UNLESS it meant access to medicine to help with the disease--or someone would give me a million bucks. The chances of you having Sjogrens is low at this time and to risk a messed up lip just isn't worth the extra aggravation.

PS. Not everyone has lip numbness, but this is part of the progression of MY Sjogrens. My mouth and lips are now as dry as my eyes.
Lucy

Lucy,

I am sorry to hear about your problems and thank you for the warning. I agree that any surgical procedure has to be thought about very carefully and know enough people where surgery has gone wrong to make me very cautious. I've had problems with dryness all my life but they do seem to be getting gradually worse with age. I use biotene (a mouthwash) for my dry mouth at the moment and it helps a lot. I would recomend it. Apart from that, there isn't much else that works apart from drinking a lot of water and that doesn't really work to be honest.

If I find something that helps, I'll let you know.

Take care of yourself

Danny

[Dotanne]

Hi Danny
The Biotene chewing gum helps the dry mouth a lot too. I always have some with me. It lasts a lot longer than the mouth wash.
I am now taking 1/2 a tablet of clonazapm (0.25mg) per day in the morning and that has helped a lot with my burning mouth/tongue syndrome. I used to have to drink water all the time but now I am not nearly so bad. You must get your Dr's advice as it is a valium derivative and is addictive. I don't want to take a greater dose if I can help it but it sure got me out of the misery level! I am very sensitive to drugs but this has helped my eyes too.
My blood tests were negative but I sure have the dry eyes and mouth.
Cheers
Dotanne

[Dotanne]

more to help dry mouth

Biotene(made in USA) also make a dry mouth moisturizing Gel(long lasting oral lubricant) to be used after rinsing the mouth. Just put 1/2 inch on the tongue and spread it out and it can be used several times a day. It is good for night time. It contains xylitol which I understand helps prevent decay and quite a few other ingredients. I understand Biotene make a toothpaste too.

My dentist also supplied me with a similar new product in NZ - GC dry mouth gel which is made in Japan. There are several flavours - I chose the peppermint - others are fruit type flavours!! It contains sodium carboxymethylcellulose (sound familiar?) and polyglycerol and a couple of other ingredients.

I'm having another tooth out tomorrow - another root canal job that has gone abcessed. It was done quite a long time ago. Lower jaw this time so hopefully it won't affect the eyes so much!

Dotanne