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

[irish]

Mat, Doesn't your doctor validate that your lower sed, CRP levels, whatever, when on steroids, DMARDS or Plaquenil, is a good indicator that your inflammation is caused by an inflammatory process.

You had a positive lip biopsy and this indicates Sjogrens. This alone is enough to cause the elevated blood work. I guess I don't understand how your doctor thinks.

Also, if your doctor is trying to find another autoimmune disease he will have to do blood work besides these inflammatory markers. For the Hashiotos disease the TPO needs to be done to identify high antibodies. Also, lupus is often identified by the Anti DNA. It is very common for people to continue to run high markers even when on the big gun meds.

This is why autoimmune disease is considered fickle. My immunologist doesn't do a ton of blood work because he says that he treats the patient, not the blood work. In other words if the present treatment is improving how the patient is feeling then things are going well. Blood work can change from one day to the next and is not always totally dependable. Just like going from positive to negative Sjogrens blood work doesn't mean that we are in remission. If a diagnosed Sjogrens patient develops negative blood work after running positive this means that they still have Sjogrens but their blood work is now negative---and will probably convert again to positive down the road.Irish

[anita]

Hi MAT,

So glad you are tolerating the Cellcept thus far.

I am very interested in this thread.  Mainly because I have had this problem for 20+ years.  They have no idea why i cannot maintain adequate hydration.  I do have nephrogenic diabetes inspidius (not the same as sugar diabetes) and this causes frequent urination.  but I can control this type of DI with NSAIDS since it is from Sjogren's causing inflammation on the kidneys preventing the ADH hormone from entering and being processed.

But anyway, the point is that not only do I drink ALL DAY LONG, water, Gatorade and Coconut water (not coconut juice or milk) and yet I'm still not well hydrated most of the time.  This is to the point of still producing venous thrombi on a very frequent basis...liek I can have 3-4 clots on any given day!!  The most likely cause of this is dehydration and my blood therefore clots too easily.  I do have APS/Hughes Syndrome, which further complicates this, but I take the highest injectable dose of blood thinners allowed and STILL have venous thrombi somewhere just about every day.

I am meeting with my hematologist on Monday to discuss this at length since I almost lost my index finger last month from a blood clot at the base of the finger.  I literally had to break the vessel by squeezing my finger as hard as I could in order to let blood flow back into my finger.  Within 3 days, I had another one in my elbow and two more in my legs.

There is NO signs of typical dehydration...dark urine because I drank all day long and my urine is almost clear.  But yet, I still seem to be dehydrate by all the other signs in my blood and these persistent clots.

So I'm very interested in what your doctors say about this as it may help me too.  Please keep me posted.

BTW, my last hematocrit on Friday was 35.1...low

[MAT51]

Anita that sounds awful and scary for you - I'm sorry. As always I feel I'm some way behind you - quite a long way because I don't have Hughes and haven't had TIAs and I don't have PsA as you do. But you have access to better testing and top notch doctors so that's a big plus and one I'm very glad about for you - you need them! Apart from that we both have so many commonalities it's uncommon! Could the inability to retain water/ moisture we share not be due to our autonomic dysfunction issues I wonder? I really did just assume that everyone with Sjogrens had this as a hallmark sign until now.

So Irish, my hematocrit is always at the highest level of normal range or slightly over - this doesn't vary - it's never below the highest readings. But no doctor has ever mentioned it so I've just assumed it's not a big deal but just part of my overall picture. If it soared they would do something I'm sure. I'm hypothyroid and it is Hashimoto's - known this for about 15 years and take thyroid replacement accordingly. The endocrinologist says it's my Sjogrens that is the main issue not the Hashis, which is well controlled. He tested me for several other autoimmunities and all were fine. I'm not diabetic although my dad, grandad and uncle all were so there is some hereditary aspect to this I suspect and I make sure I'm tested annually.

My potassium and sodium levels (electrolytes) are checked every two weeks just now as part of a full blood count for the Cellcept monitoring - and so are my renal bloods and LFTs - all okay apart from certain liver enzymes are sometimes raised - but not enough to cause concern it seems.   

My rheumatology team is undergoing changes and so I have only seen a specialist registrar since my rheum, whom I only saw once for diagnosis, has retired. The letter I received regarding the Cellcept trial, says that they are allowing me to try it because of my reported improvements on steroids. They say my bloods are not to be relied on because I have Sjogrens and my blood will be thicker so this will skew the results to suggest more inflammation than there may actually be. So they will have to rely on my account of improvements or lack of. There is an implication that this is why they don't usually offer Sjogrens patients any treatment other than Plaquenil - because our blood is unreliable. They say that my neuro symptoms will only ever warrant drugs such as pregabalin, which I can't tolerate and refuse.

The exception to this  being if I develop large nerve fibre involvement or organ involvement or Lymphoma when I would be offered Rituximab. Otherwise this Cellcept trial is the last one I'll be offered  - and this is because they are giving me the benefit of the doubt about the effects of steroids. Their other primary Sjogrens patients do not take any form of systemic treatment apart from Plaquenil so I'm unusual. They can't rule out that I have additional connective tissue diseases already but suspect that my Sjogrens is my primary disease.

So in a way they are going by my symptoms rather than my bloods and I should be pleased about this. But instead I slightly panic that it's my responsibility to know whether I'm improving or not. When I was previously diagnosed and treated for RA my first rheumatologist said he treats the patient not their blood. But I was aware that my high Sed rate influenced him whatever he said - and when it lowered on DMARDs or steroids he did feel confident that these were useful for the overall picture. But then, after severe allergic reactions to four, he changed his tune and said that my RA was innactive and non erosive so it was just a case of watch and wait. I was told by him and his eminent professor colleague that my Sjogrens symptoms would only ever be a benign but severe nuisance and this disease would not warrant immunesuppressants of itself. This was under a different, neighbouring hospital.

The new hospital appears to take Sjogrens more seriously but they say it's a rare disease and my form is even more rare apparently so there are no systemic treatment protocols in place for it. This is why I feel quite alone with the Cellcept as it isn't used for other primary Sjogrens patients in Scotland it seems. I never know which symptoms I should focus on for improvement - or if I go for overall wellbeing then what's just placebo effect because I want it to work and am tolerating it so well.

[MAT51]

Ps but there's always the niggling worry that immunesuppression increases my risk of Lymphoma

[Pete0211]

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

I own two Berkey Filters - they are great. I had a smaller one before I started with Sjogren's symptoms, then upgraded to the standard sized "Big Berkey" after a month into my sjourney, which holds about a day and a half or so worth of filtered water, based on drinking 3 liters per day. I also purchased two sets of 500ml Aquafina glass water bottles that I use - they come in sets of six, so that fits perfectly with the amount of water I try to drink each day.

[Nomad]

Pete...coooool!

Can you describe more of your routine with your Berkey water filters?

Do you fill them with tap water daily? Is this difficult to do? Does the water taste good?  do you  have a filter that removes chlorine?

I think that is what impressed me the most about the Mountain Valley Spring water in a glass bottle.  To me, there is not only a noticeable difference in taste, but this water seems to satisfy my thirst better than other waters.

I'm sooo glad you posted. I've kicked around getting this filter for a long time, but it is an investment and it does take up a lot of space, so I absolutely need to be sure.

Thank you.

[irish]

The cellcept is used often in the USA with good results. There are always those who don't do well on a med, but cellcept is being used more all the time for treatment of many of the autoimmune diseases including Sjogrens.

I still find it very confusing the way your doctors explain all this blood work and "thick" blood etc and the reason for doing treatments. It is very interesting but hard to relate to. I know that blood can be thick but hard to assess all the ongoing reasoning relating to treatments and other autoimmune issues. I guess I am talked out on the subject.

I wonder if there is some way the doctors are increasing stress for you with all the verbal interchange. Also, don't worry about the lymphoma with Sjogrens and in all autoimmune diseases. The truth is that the incidence of lymphoma has increased greatly in people without autoimmune diseases. The last I heard they blame it on the use of so many of the chemicals used in farming. We can't change a lot of the stuff that happens and if and when it happens then we have to deal with it, not before. Good luck. Irish

[Pete0211]

Pete...coooool!

Can you describe more of your routine with your Berkey water filters?

Do you fill them with tap water daily? Is this difficult to do? Does the water taste good?  do you  have a filter that removes chlorine?

I think that is what impressed me the most about the Mountain Valley Spring water in a glass bottle.  To me, there is not only a noticeable difference in taste, but this water seems to satisfy my thirst better than other waters.

I'm sooo glad you posted. I've kicked around getting this filter for a long time, but it is an investment and it does take up a lot of space, so I absolutely need to be sure.

Thank you.

Hi Nomad,

The Big Berkey has a spot on my countertop right next to the sink. It's easy to fill (though if you have it on a stand, like I do, it might be a little tall for some folks). I fill a water pitcher up with plain old tap water and just dump it in the top twice to fill it. I typically fill it with plain old tap water about every 36 hours (If I fill it on Monday morning, I'll likely fill it again Tuesday before bed, then Thursday morning, Friday night ...). Every 3-4 weeks I'll wash the insides of both canisters out, which only takes a few minutes. If I travel for up to two weeks, I'll take the filter elements out, prime/purge them and put them in a zip lock bag in the fridge.

I like the taste of the water out of the Berkey - much better than straight from the tap or through the filter on the fridge. Aside from the Berkey's chlorination filtering, I don't filter additionally for chlorine.

They are a little more expensive up front, but you can use the PayPal credit option to finance it at zero percent over six months (how I bought mine).

[anita]

MAT,

I have also just chalked it up to the autonomic neuropathy.  But never understood what the mechanism of action would be.  I mean, is it an attack on the nerves in the kidneys, or on the hormone levels that regulate fluids, or how ever many other nerve related things it could be.  Most of the autonomic problems I have, I understand what is happening (like the BP & heart rate issues, or sweating, or temp regulation), but I can't figure out why I can't process fluids properly and the doctors don't seem to know either.  What IS the mechanism that controls your fluid usage/intake/processing??  I don't think there is just one thing that controls it.  I think it's a process between hormones (like ADH), mineral cortical steroids, kidneys, and the GI track has to be a part as well (for absorption).  Maybe Irish knows??

[Nomad]

Thank you Pete!
I'm almost certain I'm going to get one.
We are moving this summer...so I will probably wait until we are settled in and then get it.
Looking forward to it.    Sounds great!

[irish]

nomad, The more I research the dehydration the more I think there are many interacting issues that contribute to this. The hormones of the glands are certainly a thought as the secreting glands such as adrenal, pituitary, etc are involved also.

I have a son who is dealing with this right now. Problems with fast heart rate to the point that it interferes with his life. I investigated his blood pressure med and found that calcium channel blockers can cause dehydration in some people. He doesn't think this is the reason but I am still suspicious of those drugs. It is good to do a review of all your medications and their interactions cause sometimes some interesting things can show up. Good luck Irish