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Red_34
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Date Joined Apr 2004
Total Posts : 23424
   Posted 3/2/2010 6:53 AM (GMT -7)   
Hi there! :)  I heard you mention in one of your posts that your Sjogren's doesn't affect your mouth so much but your eyes and ears?  I just had my blood drawn yesterday because I have been having a lot of issues lately and my doc is testing me for Sjogren's just to be on the safe side.  Btw, for the past few years I have been tested for pretty much everything under the sun (I bet my insurance company is just loving me at the moment! lol).  But the reason I ask about your ears is that along with the dry eyes I have been having an issue with my ears drying out.  Where in your ears do they dry out?  Is it in the folds?  Do your ears ever just hurt for no reason, like a short sharp pain on occasion? 
 
I don't know if I have SS since I just had my blood drawn yesterday but it seems to make sense now that I had a chance to look over websites that describe it.  Other then the lack of a dry mouth (I mean I do get that on occasion but it's not much of an issue), I seem to have pretty much everything else.  I have been to the doctors so many times for my joint pain and they can never find anything wrong with them so my doc started labeling it as possible Fibro - but I don't think it's that since I don't really fit into any of the categories.  I am seeing an eye specialist in a week to have my eyes checked out.  I've been using lubricating drops for the past 3 years but lately they've been getting worse.
 
Oh and also (sorry this is so long btw) do you ever suffer from leg and foot cramps?  I have been having a heck of time with that too lately that it's driving me nuts!  If so, what do you do for them?


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/2/2010 10:19 AM (GMT -7)   
I have very dry eyes, it was actually the eye dr that confirmed the Sjogrens diagnosis. They itch! And sometimes get scratchy, but mostly itch. Not bad enough for the medication treatment Restastus (sp?), but I do use dr recommended "eye lubricant" a couple things a day.

My ears get very itchy as well - it's down in the ear canal! Occasionally I get weird shooting pain thru them. My dr suggested I put a little cortisone creme on a q-tip and lightly insert into the ear canal where the itching is -- that's helped a great deal!

I have joint & muscle pain as well as the occasional muscle cramp. Since these symptoms were around long before the eye/ear symptoms, I've always considered them part of my Lupus. I've been treated with Prednisone, Imuran,and Cellcept - the Cellcept seems to have been the most effective.

I hope that is helpful,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23424
   Posted 3/2/2010 12:45 PM (GMT -7)   
Thanks and yes your answers help :) I don't know if I have Sjogren's or not and probably like everything else I've had done, my blood tests are probably going to come out good. It just seems like no one can give me answers and I am not looking for another thing to be wrong with me; I would just like to put a name to whatever I have - I hate not knowing what is wrong but at least with some sort of diagnosis it won't make me feel like I'm losing my mind ya know? I feel whatever it is that I have that my Mercaptopurine (6mp) is slowing it down or controlling it but it feels to be at a low simmer on the back burner if that makes sense.

Oh and my ear dryness is more or less on the folds of my ears. I don't have the itching inside my ear but I sure do itch on the outsides. Which lubricating eye drops do you use? I was originally on Systane but the optometrist gave me Bausch and Lomb's Soothe but then I switched to the same brand but the long lasting one. It works fairly well but I have to use them about 4-5 times a day. My eyes get that scratchy feeling but they also burn and I feel like I need to close them all the time or blink alot.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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Daisy1234
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/3/2010 1:34 AM (GMT -7)   
If I may suggest that you get your tear production measured by a simple test called the "Schrimers test".  That's the standard measurement used to medically determine if you have dry eye and how extensive your dry eye may be.
 
Just for the record, Sjogren's can affect any organ in one's body included the eye and salivary glands.  With Sjogrens' you can experience weakness and muscle inflammation that is transitory.  But in order to establish whether you have Sjogrens or not, a blood test which shows ANA positive (with a speckled pattern) and anti-Ro/SSA and/or anti-La/SSB antibodies are present is indicative of possible Sjogrens Syndrome.  A lip biopsy is also used to determine Sjogrens.
 
I have severe Sjogren's myself and have zero tear production on the Schrimer test which indicates severe dry eye.  I have also had punctual occlusions (tear ducts were cauterized shut) done to improve tear retention.
 
There are a number of techniques which I personally use to help me cope and to minimize the amount of corneal ulcerations and abrasions that I experience.
 
1. First I take Omega 3 supplements daily.  They will help to natural generate lubrication in your eyes.
2. I try to control my environment to the extent possible.  At home I have a moisture sensor in both the downstairs and upstairs to determine the humidity level in my home at all times.  I use a humidifier to keep the air at an optimal level of 50 to 55% humidity even during the winter months.
3.  I use an over the counter eye ointment at night to keep my eyes lubricated.  In my case I use "Lacrilube".  If you use a nite time eye treatment, your eyes will likely benefit during the day.
4. I use "Systane Ultra" during the day.
5. Before I go to bed, I wash my eyelids with "Lidcare" to clean out any debris.
6. I see my Opthamologist regularly.
7. In my case, because of my severe dry eye, I use eye protection whenever I go outdoors.  Like sunglasses etc... and I try and avoid environments that will dry out my eyes like windy conditions or I do my best to protect my eyes in I have to go out in those conditions.
8. When I get a corneal abrasion or ulceration, I use Ciloxan Ointment which is prescribed to me by my Opthamologist.
Good luck with your eyes!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23424
   Posted 3/3/2010 5:09 AM (GMT -7)   
Daisy, that is very helpful, thank you! When I see the eye doc next week I will ask him to do this test. As for the blood tests, I already know I have a positive ANA and it's still up for debate if it's from my Ulcerative Colitis(which is an auto immune disease) or something else.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
To help Healingwell - click here: DONATE
 
 
 
 
 

 
 

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