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Medical Forum / Diseases and Disorders / Lupus / December 2005

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"dry eyes it is" sjogrens

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janers - 22 Dec 2005 21:11 GMT
Well tis the season to be "jolly"?

I had to see that opthamologist and he did check my eyes and believe me the
pain had not let up. Did the Schirmer's test, the one for "dry eyes" .
almost had to peel that sucker out of my eyes.  Ever have one done?
Make a long story short, it is the lupus, sjogren's he says is JUST a fancy
word for "dry eyes"  LOL.  So that is what it is.  Pain is from the eyeball
not being able to make the tears and drying.  I am now on natural tears
hourly. Then a cortisone drop for inflammation for 2 weeks, and ointment at
night,  PLUS the new drug restasis twice a day.  I told him well looks like
I know what I will be doing the rest of my life, dropping drops in my eyes.
He didn't think that was funny LOL. But I have to go this route and it is
not a good route because this apparantly can get worse.  LIKE it is
getting.

SO I was doing the right thing by the natural tears.  He did say humidifier
at bedtime is a must and I have to use one due to my sinus junk and such.
So that was already being done.
The restasis takes about 6weeks to be really noticible and see a
difference.
Right now any eye drop burns but sun glasses help too.  Man this is no fun,
I can't set here too long either.  Let's hope it clears up but he didn't
look like he was promising me zip.
There ya got it.  Another round of something or other and My vision is my
life saver, because I am hard of hearing wear aide and need that for lip
reading...
good thing there is something to try and fix it..

hugs to all and to all a good night.

me again janers
Eleanor - 22 Dec 2005 23:02 GMT
Janers, at least you were on the right track when you were taking care of
the dry eyes waiting to see the doc!  Sorry that it is another Lupus thing
and hopefully after being on the meds it will clear up and not be bothering
you as much!  It just never ends does it?

Merry Christmas to you and yours!  Hope the New Year brings better health to
all of you.

Hugs,
Sherry
J - 23 Dec 2005 11:46 GMT
> Well tis the season to be "jolly"?
>
> hugs to all and to all a good night.

same to you, janers and good luck with the new treatments.
hugs
J
Shelagh - 23 Dec 2005 14:33 GMT
Anything to do with sjogren's happens to be 'one of my specialties' <lol>;
just ask and I can probably answer but unfortunately there doesn't seem to
be a lot of treatments for 'relief' specifically.
However this one did help significantly! *Have you tried punctal plugs or
looked into them yet?*
And good luck with what you are trying!
Signature

hugs, Shelagh
http://clik.to/lupus

> Well tis the season to be "jolly"?
>
[quoted text clipped - 35 lines]
>
> me again janers
janers - 23 Dec 2005 20:18 GMT
That will come next I suppose Shelagh.  Seems he was a kinda brush me off
kinda guy. Like "you got lupus" that is why this is happening.  He was nice
enough just kinda blah and I do not like that in a doctor...hurry hurry
type.

I am using the drops and HOPE to figure out what is going to help more and
move on here.  Sunglasses in the house can be a hazzard. I can't tell
colors and had to ask my hubby if the pie crust was done hahaha.  At least
it was but over flowed before I got to it. Makes for a nice oven.  NOW on
with the cheese ball making.

Hope the ingredients get mixed right haha

MErry Christmas, and if you  have info on Sj, send it on to ME will you??
thanks
janers
Cynthia Ward - 23 Dec 2005 20:09 GMT
I am sorry you have another dang Lupus thing to deal with. I am running
alot of parreles with this one I see my eye doc after the holidays. He
usually can tell stuff before the other docs can. And I think he has a
better sense of humor (0: I am going to get my humidifor back out I had
not though of it lately been very shot of breath I usually have that or
vaporizor going. Thanks for the info and keep your chin up. The humor is
as impportant as the meds I believe.
Merry Christmas
Love Cindy W.

>Well tis the season to be "jolly"?
>
[quoted text clipped - 29 lines]
>
>  
candi bowen - 24 Dec 2005 17:46 GMT
Well, there can be a plus side to this. Seems like every lupus problem I've
had, including Sjogren's, has eventually subsided. Of course, only to be
replaced by something else. I think the worst thing, other than
pneumonia/pleurisy, was months of hives everywhere from vasculitis. Good
luck & Merry Christmas (I know, it's not politically correct but oh well)!
Candi

> From: "janers" <rojakort@bright.net>
> Newsgroups: alt.support.lupus
[quoted text clipped - 32 lines]
>
> me again janers
Eleanor - 24 Dec 2005 18:51 GMT
It is now "politically correct" via a resolution passed by congress!  Only
22 nay votes.

Hugs,
Sherry
Nancy F - 24 Dec 2005 20:01 GMT
Sjogren's Syndrome is a stand-alone autoimmune disease. Besides destruction
of the tear & salivary glands muscous throughout the body is lessened,
thickened. Sjogren's can manifest in the CNS, the GI tract, lung damage, as
extreme muscle pain, extreme fatigue. Many have migraines associated with
it, also chronic sinusitis. So there is primary & secondary Sjogren's. As
many of us have it secondary to lupus. But believe me, it is more & worse
than "just dry eyes". I think your eye doc just tosses away the words, like
you mentioned in one of your other posts. ;).
Signature

N Farrell, SoCal

> Well tis the season to be "jolly"?
>
[quoted text clipped - 5 lines]
> fancy
> word for "dry eyes"  LOL.  So that is what it is.
Shelagh - 24 Dec 2005 23:50 GMT
You are right Nancy;
Janers, sjogren's definitely is a 'force' to be reckoned with on it's own,
even as a secondary dx to lupus; it can stand alone as can raynauds though
most lupies have both as secondary dx's.... and yes, all the linings of the
body tissues are involved especially the mucosal ones like the nasal,
vaginal, oral and gastric passages....
EG: for me sinusitis was so severe that it caused my brain to expand and
press against the sides of my skull, causing me to blackout and 'lose time'
etc. necessitating an ambulance ride to emerg where i was admitted and kept
for over 3 weeks with ct scans and all;
Sjogrens is not to be 'brushed off' by any doctor and should they attempt to
write it off, or you off, then do get a second opinion for sure! good
thinking Nancy...I have had it for so long that all I twig to is the
treatments now.... conjunctivitis in both eyes just recently was a direct
resultant of sjogrens...
and I am still on the drops, Rx and otherwise to keep them 'clean' and
nights are the worst, always have been really with sjogrens alone, never
mind the mucky messes it can cause!
wishing you lotsa luck janers!
Signature

hugs, Shelagh
http://clik.to/lupus

<snip>
"Nancy F" <nfarrell22@verizon.net> wrote in message

> Sjogren's Syndrome is a stand-alone autoimmune disease.
>But believe me, it is more & worse
> than "just dry eyes". --
> N Farrell, SoCal
</snip>
<snip>
"janers" <rojakort@bright.net> wrote in message
>> Make a long story short, it is the lupus, sjogren's he says is >>JUST a
>> fancy
>> word for "dry eyes"  LOL.  So that is what it is.
</snip>
Andy - 28 Dec 2005 21:24 GMT
>Well tis the season to be "jolly"?
>
[quoted text clipped - 3 lines]
>Make a long story short, it is the lupus, sjogren's he says is JUST a fancy
>word for "dry eyes"

Um... those with the other manifestations might have a different
opinion. Like dry mouth, dry nose, dry - well, never mind but there
too... like trying to talk or eat when you have no saliva because the
glands have ceased working...

> LOL.  So that is what it is.  Pain is from the eyeball
>not being able to make the tears and drying.  I am now on natural tears
>hourly.

Watch out for an uncommon reaction to the preservative in "normal"
artificial tears. If you get it you may have to switch to un-preserved
tears: these come in individual-dose vials and are expensive.
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

 
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