How much water are you drinking?

[Wal]

How much water is everyone drinking per day? Has increasing the volume helped to keep saliva levels up more and eyes better? I know we got bigger problems than simple dehydration, but I have heard that drinking water helps with eye and mouth lubrication....

[Joe S.]

I sip about 96 oz / day. More if I am more active.

[cccourt1942]

I am pretty sedentary.  I drink MUCH less than I once did.  I take pilocarpine (ttl: 20mg per day) at three times per day.  I use biotene gel if my tongue, roof of mouth, or TEETH feel unlubricated.  I began using the gel at night so as not to drink water all night, now I use it during the day if needed.

Water will go straight through you. It is a different consistency as mucous and saliva.  I don't know for sure, but doubt consumption of water helps your lacrimal gland dysfunction due to SjS.  That being said, it is always good to stay hydrated..for your entire body's functioning. 

I have read, and really, have learned, too much water consumption will wash away any normal mucosa in your oral cavity and your esophagus.  I have a friend whose son has recently undergone chemo and radiation for lymphoma (neck).  A mask was created for him for the radiation.  Radiation was administered with pin point accuracy.   After the first couple weeks, he could no longer swallow food.   His esophagus has been fried.  He CAN swallow water.  His physicians are thrilled.  I have talked to him (and sent him various OTC products for oral comfort) WHICH WORK.  He has had an abdominal feeding tube + a specialized product for sustenance.  He has lost 65 pounds (he was a big "boy--he's 55).  Now that his treatment is finished (and resulted in NO SIGNS OF CANCER) he is waiting another few weeks before they do endoscopy to determine how much his esophagus has healed.  I have sent him all the hints of ways we eat:  You know:  foods swallowed with gravies, sour cream, dressings, etc...and he can swallow yogurt now.   Again..they are thrilled.  I just wonder how much this hurts.  We are dealing with absence of to  reduced mucosa in our esophaguses.  Oh man.  Once his treatments were completed, he has concentrated on using his feeding tube regularly.  He has not gained weight, but has stopped losing.

I guess I went into that to say too much water can and does remove any natural mucosa your salivary glands are continuing to produce.  If I had enough, I would drink the minimum amount of water.  btw: starting about 3 years before SjS dx..and for about 1 1/2 years after dx I consumed about 96 oz per day.   Now?  I drink 50 to 66 oz per day.  I am much more comfortable now.  My oral region does not suffer but for nighttime. 

Hope you can find a happy medium for comfort in both areas.  Do you use Restasis?

Sjoldier c3

[Jasper]

I drink about 2 quarts of water per day. I drink most of it earlier in the day when I take most of my pills and supplements. I sip water the rest of the day. I try not to drink much after 6 pm or I will be up all night urinating. I usually drink nothing after 7 pm except a sip of water before I go to bed.

Unless one does not drink much water, the problem is not dehydration. The problem is that our glands don't produce enough saliva, tears, lubricating fluids. Drinking more water than we need will not fix our glands and will not give us more saliva, tears, oil, etc. 

In fact, drinking water all of the time can actually dilute what saliva we do have, which can impact our oral and general health.

"Human saliva not only lubricates the oral cavity, making possible functions such as swallowing and speaking, but it also helps to maintain integrity of the hard tissues of the teeth. In addition to secretory immunoglobulins saliva contains several less specific antibacterial systems. This innate defense system includes: lysozyme, lactoferrin, peroxidase system, histatins, mucins, and other polypeptides with basic side chains. Some proteins of innate defense system have bactericidal or bacteriostatic effects; some can cause aggregation of oral bacteria resulting in their increased clearance from oral cavity."

http://www.ncbi.nlm.nih.gov/pubmed/17966890

Of course, we need to take sips of water throughout the day, but in between, it is best if we do things that will actually stimulate the production of saliva instead of drinking water all day long.

The new treatment guideline for Sjogren's Disease gives the current recommended treatment for both oral and ocular manifestations of Sjogren's:

http://www.sjogrens.org/files/research/RheumatologyCPG.pdf

Personally, for my dry eyes and mouth, I take CoQ10, Omega 3's,  N-acetyl-L-cysteine, Curcumin, and Restasis eye drops.  I use MighTeaFlow mouth lozenges, mouth rinse, mouth spray, and lip balm. I use Biotene dry mouth rinse. I take Plaquenil. My saliva flow definitely increased after starting these products. I am now on Rituxan (7 months) and my saliva flow has increased even more on Rituxan. However, even before I started the Rituxan, I had a very noticeable increase in saliva.

[bluegardenia]

drinking water makes the difference for me. i have to drink at least 1 liter 1/2, better 2 liters. if i drink less my mucous gets thicker. and my dryness worsenes. not to speak about skin and hair...

[SunshineDaydream]

I don't recall noticing a difference in eye, mouth or nose moisture level depending on how much water I drink per day. Maybe I'll start paying attention and see if there's a difference. The purpose of my water intake, in addition to avoiding dehydration, is to prevent UTIs.

It is possible to drink too much water to detrimental effect, so you don't want to overdo it. My doctor recommends the amount of ounces equal to half of your weight which is my goal. So, for example, a 100 pound person would be 50 ounces per day. Probably the standard recommended 8 glasses of 8 ounces water per day is safe for most except really small people.

I agree with prior poster that for mouth, it's more important to produce saliva rather than just drink water as saliva has dental cleansing properties and also assists with digestion throughout the system.

[Nomad]

I find that drinking approx. six glasses of water a day helpful.
AND chewing gum a few times a day.
Plus,  of course, brushing with Biotene toothpaste.
I seem to avoid drinking water, so for me, sadly it is often  whether I drink my water on a given day or maybe I drink almost no water. This is always not a good idea.
I have to set timers or I'm in "diet" mode and then I drink the water.
If I drink water like pretty much all the medical people say we should (6-8 glasses per day) there is a slight improvement in my dryness.
AND chewing gum a little each day  helps too.
It's almost impossible for me to drink too much water...I'm just not a big fan.
For me, I'm thinking drinking the normal amount of water daily certainly isn't too much to ask for a little improvement.
Every little bit helps.

[bluegardenia]

NOMAD  can u buy BIOTENE ooth paste??? its not available for us in europe since last year and they told me that its unavailable also in the states!!! i loved it and miss it!!

[Nomad]

Yes I can get it here in the states. However, perhaps nine months ago I wasn't able to get it for approximately a month.
During this time I used a toothpaste from the health food store that I liked.
Have you tried Amazon to see if you can order Biotene there?

ETA: I found this old post when I temporarily couldn't get Biotene


"I've been using Squiggle toothpaste and love it! You get it at the health food store or amazon.  Refreshing.  Natural.  Comes with Flouride or without. Helps somewhat with dry mouth, not as much as Biotene but very CLOSE!!!!  I really like it. Good for sensitive teeth as well. "

[bluegardenia]

thanks nomad

[jazzlover]

I'm sure I drink about what I am supposed to drink for my weight... about 70 oz a day. I know it makes a difference to MY BODY!

[SjoDry]

A minimum of 96 oz. a day.

Take care.
SjoDry

[Nomad]

You are welcome, bluegardenia. I remember really liking the Squiggle toothpaste.

I love MyFitnessPal (MFP) to track my calories, but now I'm also using it to track my water intake and so far, so good!!!!

As a side note...Has anyone here purchased the Premium MFP membership? I'm just wondering if it is worth it to pay a fee.

[bluegardenia]

NOMAD, i googled biotene tooth paste but on amazon they have just one tube  all over the worls, nothing else, seems so strange, thanks anyway

[Nomad]

Consider the SQUIGGLE toothpaste.
This is probably on Amazon and is almost as good as Biotene.
I think ACT now makes a toothpaste for dry mouth.
I hope you find something, Bluegardenia.