Sjogrens and chronic dehydration - plus question about small soft palate lump?

[MAT51]

I haven't been around for a while because I've been settling onto Mycophenolate/ Cellcept and travelling from old home to new, and back again. We move properly in early April.

Meanwhile I seem to be doing well on Cellcept - or rather I'm tolerating it well - which isn't quite the same of course.

I've been thinking hard about this dehydration business. I read up and I find that this inability to retain moisture is totally consuming me. So why oh why are there no still treatments that work slow the progress of this disease? Why do so many doctors and those with other connective tissue diseases, assume that Sjogrens is the most benign of the rheumatic diseases? How can it be when we are living all the time in a state of chronic dehydration? I'm drinking water or herbal tea constantly but still my bloods and symptoms tell the story of a person who can't get hydrated no matter how hard she tries?

Next question: I have a small, tender lump on the roof of my mouth and my throat is constantly sore - has been for a month. I've had it checked out by a dentist who says that he thinks it must be a serbaceous cyst that is slightly inflamed. He says my mouth gets progressively dryer near to my throat. I feel I have a reasonable amount of saliva so where is it going - is the back of my tongue and throat lined with blotting paper? I have these oesophageal spasms sometimes that scare the wits out of me.

I'm to see the oral medicine specialist who arranged my lip biopsy and gave me the very positive results last year. I'm not worried that it's anything sinister - the dentist didn't think it was but wanted a second opinion. He says I have no sign of thrush, ulcer, throat infection, tonsillitis or Mucocele. The GP says that my bloods are satisfactory - even my CRP is down to normal range for the first time in ages - although sed rate still high - but that's just the dehydration of Sjogrens apparently.

But still my mouth is still so sore and tight and tinnitus bad as ever, constipation terrible, and I still have this arm weakness, swallowing is not nice, gastritis and bad taste have gone but this could well just be because of taking Ranitidine twice daily. I'm just so tired all the time and none of this is very reassuring where it comes to Cellcept being effective yet. It's my eighth week on it now. I'll hang in there with it but I'm feeling increasingly pessimistic about Sjogrens being a fairly loathsome and untreatable disease. Sorry to be gloomy!

[irish]

I have to say that I am somewhat confused. I have never had problems with dehydration. If your sed rate is high it is probably because it is high. If none of your other blood work such as potassium, sodium, etc., are out of whack you probably don't have dehydration.

I know that I am thirsty all the time and drink a lot. I sip don't glug. I also chew on ice occasionally ad sometimes a lot. When my anemia is worse I crave ice more. I don't know what to tell you about the dehydration cause I haven't seen many people offering it up as a big problem. I could be wrong. Maybe there will be more posts.

If the tissues in your mouth are tight and swallowing is a problem it would be good if you could be checked for scleroderma. This is another autoimmune disease that affects the collagen more. The collagen is actually
sort of the glue that holds our tissues together. People with this disease usually have tight tissues on their face, oral tissues, tissues of hands and legs, etc. Also, you are complaining of weakness and this should be assessed by a neurologist as their are other autoimmune diseases that could be responsible  for that.

I am wondering what products you are drinking. Some of the herbal teas could cause problems. I know that I can only drink a couple of herbal teas and make sure they have very little things in the ingredients. I suck on sugar free cough drops much of the time and it keeps me from going crazy. Also, you might want to do an inventory of your medications and see if there are some that are notorious for causing dryness and maybe have doctor help find another medication to take its place.

It is good that you are getting a second opinion for the lump in your mouth as it is very hard to identify what a lump is caused by. You will probably end up having it removed and biopsied which is precisely what should be done. Hopefully your cellcept will kick in soon and you will feel better. Irish

[MAT51]

Thanks Irish. It's only a very small lump and the dentist was probably right to think it's a serbaceous cyst. It may go away by the time I'm seen but as I'm getting intermittent parotid pain and the tinnitus counsellor/ audiologist thinks that my bruxism might be causing jaw arthritis and triggering the tinnitus (as nothing vestibular/ ear related  showed up), it will be good to discuss this with my oral consultant.

I'm being investigated for Scleroderma at my next rheumatology appointment in April. I think the mouth problems are part of cranial neuropathy rather than skin tightening because of collagen issues but could be wrong. This is partly why I asked to try Cellcept. My Scl70 and other specific Serum pointers are negative although I have the right ANA pattern (i.e. Nucleolar). Sjogrens can cause weakness of the limbs and tendons too and my EMG and NCS were normal.

But I suspect Sjogrens is my main disease and I just can't see how dehydration isn't built in for most of us - bearing in mind that our exocrine glands are being progressively eroded and we can't easily retain moisture?

Certainly my inflammatory bloods (total protein, ESR/PV, RBCs, CRP) and CSF have consistently shown very concentrated protein levels that might indicate dehydration but not sodium or potassium..yet.

If I look at these 12 signs listed below, I have every one. I can't believe this isn't a hallmark of Sjogrens? - actually it is because Arthritis Research UK states that the sed rate is very often extremely high for those with Sjogren's due to lack of moisture in the blood. But personally it doesn't seem to matter how much liquid I consume (constantly sipping water or organic herbal teas!) I just can't seem to keep enough in my skin or connective tissue to feel remotely moist? I pee loads though but I do have microscopic haematura and a very large, irregular kidney cyst.

Why wouldn't those of us with Sjogrens be chronically dehydrated?

[MAT51]

"12 Symptoms of Chronic Dehydration

According to Dr. Dave Carpenter, author of Change Your Water, Change Your Life, the following are 12 of the more common symptoms of chronic dehydration:

Fatigue. Water is the most important source of energy in the body. Dehydration causes the enzymatic activity in the body to slow down, producing tiredness and fatigue. Thus, one of the earliest signs of chronic dehydration is fatigue.

Constipation. The colon is one of the first places the body pulls water when it is short of water in order to provide fluids for other critical functions in the body. Without adequate water, wastes move through the large intestines much more slowly. In fact, sometimes they don't move at all. Thus, constipation is almost always one of the primary symptoms of chronic dehydration.
High blood pressure. The blood is normally about 94 percent water when the body is fully hydrated. When dehydrated, the blood is thicker causing resistance to blood flow, which thus can raise blood pressure.

High cholesterol. When the body is dehydrated, it will produce more cholesterol to seal off water loss from the cells. Cholesterol deposits within the cell membrane act to prevent additional cell water loss, ultimately for survival.

Acid-alkaline imbalance. The ideal environment for the health of the body is slightly alkaline. Our blood, in fact, is always slightly alkaline, usually ranging between 7.3 and 7.4 pH (7.0 being neutral). Dehydration significantly reduces the ability of the body to eliminate acid wastes.
Digestive disorders. The body needs an adequate supply of water to produce a wide array of digestive juices. A shortage of water and alkaline minerals, such as calcium and magnesium, can lead to a host of digestive disorders, including ulcers, gastritis and acid reflux.
Asthma and allergies. Another way the body rations water when dehydrated, as a survival mechanism, is by restricting airways. Respiratory problems are key symptoms of chronic dehydration. The rate of histamine produced by the body increases exponentially as the body loses more and more water. According to Water for Health, for Healing, for Life, chronic dehydration "is the primary cause of allergies and asthma in the human body." Drinking plenty of water is the single most important natural remedy for asthma.

Weight gain. When dehydrated, cells are depleted of energy. They then have to rely on energy generation from food rather than water. People thus tend to eat more when, in reality, the body is thirsty. In addition, the body will not metabolize fat unless the body is adequately hydrated to safely remove dangerous toxins that are often stored in fat cells.
Skin disorders. The skin is the largest elimination organ in the human body. In a dehydrated body, the first site for water conservation is the skin. Dehydration impairs the elimination of toxins through the skin and makes it more vulnerable to all types of skin disorders, including dermatitis and psoriasis, as well as premature wrinkling and discoloration.

Joint pain or stiffness. All joints have cartilage padding, which covers the bone structures in the joint, providing necessary lubrication. The cartilage itself is composed mainly of water. When the body is dehydrated, cartilage is weakened and joint repair is slow. According to Dr. Batmanghelidj, the joints in which the pain is felt depends on where the localized drought has set in.
Bladder or kidney problems. As with all of the organs of elimination, when the body is dehydrated, toxins are not eliminated as well. The accumulation of toxins and acid waste create an environment where bacteria thrive. Thus, when dehydrated the bladder and kidney become more prone to infection, inflammation and pain.

Premature aging. When the body is chronically dehydrated, the skin begins to wrinkle prematurely. More importantly, what we don't see is the same wrinkling and withering effect on the internal organs. The most effective and the most inexpensive way (by far!) to slow the aging process is to drink enough water, especially as we get older.

Prevention

Chronic dehydration is preventable if we develop a regular daily habit of drinking about half of our body weight in ounces of purified water.

Most of us simply do not drink enough water to stay hydrated.

In addition, the type of water you drink does make a difference. Mineral balance in the body is also essential for proper hydration. Thus, it is important to drink water that is mineral rich rather than de-mineralized water (such as reverse osmosis or distilled)."

[Nymph]

I have a problem with dehydration but it is related to my POTS/dysautonomia. I supplement with salt to help me retain more fluids in my blood. As I understnd it, the dryness of Sjogren's is not caused by dehydration throughout the body, but localized dryness in areas where the exocrine glands are not working.

That said, I also have a very dry throat without having such a dry mouth. Irrigating my nose has been the most helpful thing for that.

[MAT51]

That's very interesting. I have presumed autonomic dysfunction,  or what the neurologist describes as ganglionopathy with SFN. They won't test me for either though as they say they I have a histologically confirmed diagnosis of Sjogrens and that's enough for it to be confirmed by the neurologist. Straightened times and health economics of an ailing NHS are the real reason I'm not tested for AD though. The testing tools are gone. 

I suppose I just keep assuming that the exocrine dryness is just the tip of the iceberg for all SS sufferers, as it is for me. I know I'm always somewhat dehydrated (not same severity as people who don't drink enough when it shows up in their sodium and potassium levels as Irish suggests). And I do suffer enormously from this in every part of my body, although it hasn't affected my internal organs yet thankfully - apart from some small vessel disease of the brain. But you misunderstand what I'm asking or supposing. I'm not saying that the dry eyes and mouth are the result of dehydration - I'm suggesting they might cause it - hence why PoTS and autonomic problems are so common for those with Sjogrens?

Bearing in mind that we need tears and we need saliva and we need to sweat in order to function properly everywhere else - I still can't believe that exocrine/ topical dryness won't affect all of us more systemically if it continues to be only addressed topically. Like a building that is drying out the cracks on the surface will usually lead from superficial settlement to subsidence after a while. And if they don't is it really Sjogrens?

Ps how do you irrigate your nose?

[irish]

The decrease in secretions by the glands is caused by the influx of white cells into the glands. These white cells are trying to kill off the glands as the body mistakedly thinks the secretory glands are a foreign invader. Basically the glands get swollen and inflamed because they are full of white cells. The lip biopsy is a test that shows the inflamed salivary glands that are infiltrated by the white cells or lymphocytes.

Constipation in Sjogrens is caused by the decrease in the mucus secretions in the GI tract which makes the colon less lubricated and the stool can't slide through the colon as easily. The change in the secretions in the esophagus, stomach and GI tract are instrumental in the constipation also. Also, the change in the bile produced by the liver can affect the dryness of the stool. The bile has many chemicals that can also be changed by the Sjogrens resulting in the digestive issues that also occur with Sjogrens.

There is also the neuropathy in the colon that occurs due to the autoimmune disease. This can decrease the peristalsis in the colon. This is a huge problem for some people and affects their dietary pattern a lot. When a person eats and the food just sits in the stomach and takes hours and hours to digest and be propelled along through the stoma pch and colon it affects nutrition and comfort greatly.

There is a condition called RTA or Renal Tubular Acidosis that can occur with Sjogrens. It affects the kidneys and the potassium levels in the body. Weakness is a mucbig symptom. This can be devastating but is much more easily controlled than other issues by blood work and potassium supplements.

The allergy and asthma issues are caused by hyperactive airways. The thick mucous is not the cause of the asthma but is a contributing factor in an attack. We can have thin mucus in our airways and still have an asthma attack because of the airways that constrict as a result of extrinsic or intrinsic means.

Dehydration is important but it isn't the cause of all health issues. If it was the doctors would have a really easy time treating our illnesses. Our bodies are made to keep our ph balance in order and there are times when things get out of whack, of course, but that is why the docs check our blood. They want to make sure we are not having a potassium or sodium imbalance,etc. Irish

[MAT51]

Thanks for this helpful explanation Irish. So to clarify - this idea that my rheumy explained to me that my inflammatory markers are probably so high because my blood is extra thick - giving a false reading because of the high concentration of proteins - is not the same as dehydration?

I also wanted to ask how my low secretions can be affecting my GI system so much at both ends when the front of my mouth appears to have plenty of saliva? Is it the quality of the saliva perhaps? I have a salty taste all the time and this sore throat. The dentist said my mouth was much dryer at the back than at the front. How is this possible when my teeth aren't rotting and I can feel the spit circulating and I sip water frequently and pee loads?

My lip biopsy showed all five salivary glands taken had in excess of 50 foci (I think that's clusters of lymphocytes) meaning extremely positive. Does this mean my white cells will affect my saliva production more and more over time and is there any other medication, apart from cellcept, that might help? I've heard that Pilocarpine can work but no one has suggested it to me yet. Have you tried it?

[Linda196]

One simple lab test for dehydration is the hematocrit, a ratio of blood cells to blood serum. Serum can be thickened with protein, but if the ratio of cells to serum remains normal (my lab lists 0.370-0.460 for females, 0.380-0.500 for males), dehydration is not the issue.

Other changes in blood chemistry are reflective values, showing elevation in concentration due to the dehydration, not causing it.

[MAT51]

Thanks Linda196. My MCV and RBCs are often slightly elevated above range  - I think this and my usual elevated total protein are where I'm getting the idea that I'm often dehydrated from. Not sure if these are the same as hematocrit but I think this is same = RBCs (Red Blood Cell count)?

I've never had any scientific education so I just want to understand better but I often feel I'm making some progress but almost immediately I seem to go back to the start. ARUK is where my rheumatologists get their information from,  or visa versa.

Arthritis Reseach UK - Sjogrens page:
"Blood tests – People with Sjögren's syndrome often have high levels of antibodies in their blood. These can be measured with blood tests. High antibody levels can make your blood thicker than usual, and this is measured by an erythrocyte sedimentation rate (ESR) test. The ESR measures how fast the cells in a tube of blood settle. The thicker your blood, the faster the cells settle and the higher the ESR.

People with Sjögren's syndrome often have very high ESR levels regardless of whether they feel well or ill. In Sjögren's syndrome, the ESR or other measurements of inflammation such as C-reactive protein (CRP) aren't very useful in assessing how active the condition is – unlike in lupus or rheumatoid arthritis.

Two particularly important antibodies are called anti-Ro and anti-La antibodies. They're found in 75% (anti-Ro) and 40–50% (anti-La) of people with primary Sjögren's syndrome and can also be seen in patients with lupus. If you have anti-Ro and/or anti-La antibodies along with dry eyes and/or a dry mouth, it's very likely that you have Sjögren's syndrome."

[irish]

First of all, as Linda explained there is a test to prove when dehydration is present. Also, generally when a blood test is a couple of points above or below the "normal" range the doctors do not panic as usually it is expected that lab tests can vary in these small amounts without it having any real affect---sort of a built in margin of error thingy. Also if you have blood counts that are significantly above the normal range one can expect that this is not caused by dehydration.

Example, sed rate is usually 0-20 in US labs and if one has a test of 25 it is worth watching but not worrying over. A recheck in a few months is probably in order to see if it continues to go up which is significant or if it returns into the normal range. If you have a sed rate of 53 it is pretty sure that you are running high and have some type of inflammatory process going on. Also, all these tests for inflammatory processes can also be influenced by our exposure to cuts, colds, etc and this is usually factored in by the doc when he reads the test.

It is of little significance which part of the mouth or throat is dry or drier as this is impacted by the amount of salivary glands in the area and how much damage has been done to the glands ability to produce and secrete. Also, the mucous in the mouth is of an inferior quality as the glands have been damages and don't produce mucous of the same amount and/or thickness, consistency, etc. This can change from time to time.

The change in the mucous is something that affects our teeth. More so, the type of bacteria and amount of bacteria in this mucus is changed. Normally we have around 700 bacteria in our mouth that help maintain the healthy surroundings for our mucus membrane and our teeth. When the mucus has these changes and the bacteria changed our teeth are at higher risk for cavities.

Just a moot point, We have the large salivary glands at corner of our jaw below our ears, underneath our tongue area and under each side of our jaw sort of lateral to the thyroid gland. Look up images salivary glands on google.

Page 2 coming up. Irish

[irish]

I'm a retired registered nurse and I read some of the post you just inserted from the research UK. This is very confusing in the way it is presented and this is generally true of research information. It can truly confuse a person cause it is research---. I would suggest finding a user friendly site that will explain thing to you in such a way that your basic knowledge will improve. When you are sure of your information then you can expand on your research.

Some sites are The Cleveland Clinics- sjogrens information. Their site is pretty good. Also, John Hopkins has good info. Sometimes have to pick out the easier to understand stuff. I am suggesting sites that you can be pretty sure of. Some of the sites out there can post some really crazy stuff.

Also, it is possible to have a seronegative case of sjogrens or lupus. This is where the blood work is negative. Doctors are not very liable to tag us with a diagnosis when we have negative blood work. However, the recent years have shown that people can have all kinds of symptoms and suffering and still have the disease. It is considered prudent to start people on Plaquenil as the drug of choice when first treating Sjogrens and often lupus also. Hope this info has helped you some. Also, pay attention to the years the information was printed as there has been a lot of new information over the years. Good Luck. Irish

[Nomad]

This was great and I will re-read it.
My blood test results continually indicate dehydration.

I really really like MOuntain Valley Water in the glass bottle. I just find that this particular water quenches my thirst in a better way than others.

It is, however, expensive and the glass bottles make it not very potable...easy to take around.

So, I do use other small plastic bottles to take around with me.

I've heard there is this thing called the Berkey Water Filter that is suppose to be very good.

I DO find that when I drink a lot of water daily for several days in a row, my dehydration is a little better.

It is just soooo hard to drink a lot of water. Sometimes I set a timer to remind me.  When I drink what is considered by many to be a normal daily intake of water, I not only have less dry mouth, but other symptoms like constipation.  The dry mouth is almost a given, but I feel as if it is my responsibility to at least drink what doctors recommend EVERY BODY drinks daily and when I don't do this I feel as if I'm being somewhat irresponsible.

[MAT51]

I'm a retired registered nurse and I read some of the post you just inserted from the research UK. This is very confusing in the way it is presented and this is generally true of research information. It can truly confuse a person cause it is research---. I would suggest finding a user friendly site that will explain thing to you in such a way that your basic knowledge will improve. When you are sure of your information then you can expand on your research.

Some sites are The Cleveland Clinics- sjogrens information. Their site is pretty good. Also, John Hopkins has good info. Sometimes have to pick out the easier to understand stuff. I am suggesting sites that you can be pretty sure of. Some of the sites out there can post some really crazy stuff.

Also, it is possible to have a seronegative case of sjogrens or lupus. This is where the blood work is negative. Doctors are not very liable to tag us with a diagnosis when we have negative blood work. However, the recent years have shown that people can have all kinds of symptoms and suffering and still have the disease. It is considered prudent to start people on Plaquenil as the drug of choice when first treating Sjogrens and often lupus also. Hope this info has helped you some. Also, pay attention to the years the information was printed as there has been a lot of new information over the years. Good Luck. Irish

Thanks Irish. ARUK is pretty reputable and their booklets are given to most patients diagnosed with any rheumatic disease so they are the main public information point in the UK as well as the main research organisation for drug trials and research. It is our version of the John Hopkins.

But I agree that their Sjogren's information is very confusing and apparently they will be reviewing it over the coming few months. At least you can understand why I'm confused now. Apart from anything else the Cellcept blood monitoring is including my plasma viscosity (a more reliable alternative to the sed rate) and CRP. If these don't come down from high (between 56-90 when off steroids or DMARDs) then they will assume Cellcept is not helping. This is why I'm interested in what is causing my high inflammatory bloods - which have been high for six years now apart from when on steroids or Plaquenil when it got down to 17 (range is 0-10). Methotrexate helped reduce sed rate too but only when combined with Plaquenil. Shame I could not tolerate either.

I did take Plaquenil for previously (mis)diagnosed RA but after 18 months it gave me anaphylaxis. Also tried Sulfasalazine (anaphylaxis), Methotrexate (2years of nausea even by injection) and Imuran (pancreatitis). So you see the Cellcept is the last drug I'll be offered because I'm seronegative. My ANA is positive and,as I say my lip biopsy was 100% definitive of Sjogren's. I know about parotids already because mine were checked by ultrasound last year at same time as lip biopsy was done - and came were normal/ no inflammation. I think much of my mouth pain is neuropathic due to cranial neuropathy. I do have some positive bloodwork but not specific for Sjogrens so I had the lip biopsy to clarify - which fortunately for me it did.

Hope this clarifies where I'm coming from and why I'm asking all these questions! I do use the other sites you mention but it's important to remember that each country has its own criteria and protocol and Medication names and tests differ so it can just end up being more confusing. The UK seems very much behind the US on Sjogrens but I don't think this applies to all European countries or other rheumatic diseases - just Sjogrens.

[MAT51]

This was great and I will re-read it.
My blood test results continually indicate dehydration.

I really really like MOuntain Valley Water in the glass bottle. I just find that this particular water quenches my thirst in a better way than others.

It is, however, expensive and the glass bottles make it not very potable...easy to take around.

So, I do use other small plastic bottles to take around with me.

I've heard there is this thing called the Berkey Water Filter that is suppose to be very good.

I DO find that when I drink a lot of water daily for several days in a row, my dehydration is a little better.

It is just soooo hard to drink a lot of water. Sometimes I set a timer to remind me.  When I drink what is considered by many to be a normal daily intake of water, I not only have less dry mouth, but other symptoms like constipation.  The dry mouth is almost a given, but I feel as if it is my responsibility to at least drink what doctors recommend EVERY BODY drinks daily and when I don't do this I feel as if I'm being somewhat irresponsible.

I know what you mean. I drink far more than the recommended levels though  - I feel awash. But I still get severe constipation and swallowing problems unless I take the max amount of liquid Senna and Lactulose. We have a water filter jug but the water where we live is treated and pretty good. Otherwise I drink Highland Spring bottled water (live in Scotland!). I know I'm always drinking a lot because I pass huge amounts of water very often! Wish my body could hold onto some of it better!