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Sjögren's syndrome - can anyone help? Options
rheumatoidymummy
#1 Posted : Tuesday, February 09, 2010 12:57:51 PM Quote
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Hello all,

I'm beginning to worry that I might have the funny Sjögren's syndrome, my skin and eyes are v dry as is my throat so I can’t shake off a sore throat I’ve had a for a few weeks – something else to mention at my next clinic I guess but I wondered if anyone else on here either has it or suspected they had it?

Many thanks

Ju x
jeanb
#2 Posted : Tuesday, February 09, 2010 1:09:06 PM Quote
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Hi Ju

Many of us have Sjorgren's, however, sometimes the RA itself can cause dry eyes and skin, and this is not necessarily Sjorgrens.

Maybe the best thing would be to speak to your GP about the sore throat initially as you could have an infection which should be treated, and ask about the possibility of Sjorgren's then.

Some of the common symptoms are dry eyes which are helped by sno tears or similar, dry mouth which can be helped by always having a bottle of water to hand and dryess in other unmentionable placesBlushing

It also helps enormously to wear wrap around sunglasses (even in the winter!)

Much love
Jeanx
Calmwater22
#3 Posted : Tuesday, February 09, 2010 1:51:18 PM Quote
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Hello
aww best to tell rheumy they can test for sjorgrens may well be just RA i had test done dont have sjorgrens for me it was actually 2 of my meds along with RA causing mine.
also gp initually in case of throat infection.
all best melly
cuddly cats make my world seem so much more fun
dorat
#4 Posted : Tuesday, February 09, 2010 2:05:42 PM Quote
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Hi Ju,

Jean's given you some good advice, I can't really add to that.
Hope you get it sorted soon.

Love, Doreen xx
JulieM
#5 Posted : Tuesday, February 09, 2010 2:10:00 PM Quote
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Hi Ju,
I have Sjorgrens too but I don't have a sore throat associated with it. I agree that you ought to make sure you haven't got an infection coming on first and then you can asked to be tested for SS.
I chew chewing gum ALL the time as i find this really helps the dry mouth.
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
lyn2
#6 Posted : Tuesday, February 09, 2010 3:49:45 PM Quote
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Hi there

I have a continual dry mouth and eyes, and like you have had a sore throat now for about 4 weeks. I haven't had a test for sjorgrens, but have viscotears for my eyes, and a mouth spray, although I find the only thing that's any good is to keep drinking water, or sucking pastilles. I find talking on the phone very difficult, it's not easy to keep sipping drinks then.

Lyn
chockers
#7 Posted : Tuesday, February 09, 2010 6:14:33 PM Quote
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you can put tear eye drops in every 15 mins it won,t hurt .


i have dry eyes but not sjorgrens mine is caused by thyrioed which had since the 90s
The chocolate eating housewife ...The washer woman .....naughty lady
anne_t
#8 Posted : Tuesday, February 09, 2010 8:15:43 PM Quote
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There are several ways to help with SS. An optician suggested a flannel as hot as I could stand it helps to bring blood to come to the eyes.
Also I use Celluvisc tears which come in single dose drops so I keep in handbag. I also find flourescent lights in shops very drying. Only use opened eye drops for 28 days to keep risk of infection as low as possible. I use Boots eye pads everyday to clean eyes. One for each eye. ] have also been told not to use contact lenses as I haven't got enough liquid there to clean them naturally. Hope this helps.
christine_l
#9 Posted : Wednesday, February 10, 2010 3:18:00 PM Quote
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Hello,

I have Sjogrens and suffer dry everything!!

I dont know if this is any help but I first noticed my eyes and was referred to an eye surgeon who operated to block the tear duct at the bottom inner corner of each eye.

This means that moisture is retained longer in the eye, no problems and l use eye drops about 4 hourly. Very pleased with it.

Boots own make of Dry Mouth spray is the nicest of all mouth sprays, l have tried them all!! Has a slight minty taste too.

Christine xx
jeanb
#10 Posted : Wednesday, February 10, 2010 5:57:45 PM Quote
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Hi Anne

I've always used Sno tears but the single dose drops sound great. Are they on prescription please? If so, I think I'll ask to try them.

Love Jeanxxx
anne_t
#11 Posted : Wednesday, February 10, 2010 6:45:37 PM Quote
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Hi, yes you should be able to get them on prescription. I prefer them as they are easy to use and DON'T sting.
jeanb
#12 Posted : Wednesday, February 10, 2010 6:59:10 PM Quote
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Thanks for this - I'll request some next visit.
xx
Calmwater22
#13 Posted : Wednesday, February 10, 2010 10:19:18 PM Quote
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That mouth spray sounds great i ahd one from gp was like oil in mouth grr,if gets that dry again il try it.

for now sue sugar free gum and sips water.
eyes i use a herbal eye drop.
seems ok not bad as last year.
melly
cuddly cats make my world seem so much more fun
amanda_lewin
#14 Posted : Wednesday, February 10, 2010 10:25:36 PM Quote
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I don't have Sjorgens but use Euphasia (Eyebright) to relieve sore and dry eyes;http://www.greathomeremedies.com/herbs/eyebright.html

Great remedy!

A



RedDog
#15 Posted : Wednesday, February 10, 2010 10:27:51 PM Quote
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jeanb wrote:
.............and dryess in other unmentionable placesBlushing

It helps enormously to wear wrap around sunglasses (even in the winter!)



Jean, I'm at a loss to understand how the latter can help the former!!
A friend is someone who knows all about you but loves you anyway!
jeanb
#16 Posted : Thursday, February 11, 2010 1:12:39 PM Quote
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One day I'll let you in on the secret!!LOL
rheumatoidymummy
#17 Posted : Thursday, February 11, 2010 4:36:29 PM Quote
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Thank you all so much for your replies and useful tips - I think I'll bring this up at my next clinic. Have been to my GP who took a look at my throat and it's clear - she did prescribe a super strength moisturiser for my hands though which I must go to the chemist to collect!
jeanb
#18 Posted : Thursday, February 11, 2010 6:28:13 PM Quote
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Thank goodness it's not an infection

Love Jeanxxx
JulieM
#19 Posted : Friday, February 12, 2010 8:50:58 AM Quote
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rheumatoidymummy wrote:
Thank you all so much for your replies and useful tips - I think I'll bring this up at my next clinic. Have been to my GP who took a look at my throat and it's clear - she did prescribe a super strength moisturiser for my hands though which I must go to the chemist to collect!



Could you tell me the name of the cream your doc has prescribed please? Alan (my hubby) has hands like sandpaper!
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
Calmwater22
#20 Posted : Friday, February 12, 2010 12:31:19 PM Quote
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aww glad no infection for you,cream for very dry skin thats brill t care lv melly
cuddly cats make my world seem so much more fun
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