sjogrens syndrome

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nanasue
nanasue Member Posts: 465
edited 10. Feb 2011, 12:32 in Living with Arthritis archive
Hi all,
hope everyone is as well as can be expected at this time of year with these horrible dark, dreary days. I've been speaking to a friend of a friend who has sjogrens and I'm beginning to think I might have it as all the symptoms fit, I was wondering if any of you have this and could shed some light on it before I go to rheumy appt: on 15th so I know what I'm talking about before I see her.

Sue x

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    This crops up repeatedly but I cannot remember much about it - I think one of the symptoms is dry eyes/dry mouth. Try doing a search on it (on this forum) and you should find the threads without too much difficulty. Don't check the net - too much erroneous info out there, methinks! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
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    Hi Sue

    You may like to google the BSSA (British Sjogren's Syndrome Association). There is also a helpline and you do not need to be a member to call them. There are some interesting facts on their website. I hope this may help you.

    I suffered quite badly from gritty, sore eyes years ago and went to be tested and the verdict in my case was "dry eyes". Sjogrens was never mentioned to me. I was prescibed hypromellose drops (artificial tears) and after a long while this eventually went and I was free of the dry eyes for years. Now it returns every so often. I do suffer from a dry mouth too which is not helped by quite recently being prescribed amitriptyline in a low dosage daily.

    As DD says there are quite a few past threads on Sjogren syndrome on the forum. Use the Search facility and type in Sjogrens and also click on Living with Arthritis zone and you will get quite a bit of information from there too.
    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
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    Hi Sue i went to the rheumy last week he thinks i have sjorgens , i have been feeling ill for 3 years the main thing that troubled me was lossing of my voice . I have a very dry mouth and gritty eyes . I have had a lot of mouth infections as well . My joints have been sore all over my body which they say has to do with sjorgens but i have OA in most joints so i dont know which it is . I also feel really hot all the time and feel ill most days it also stops me sleeping. It has also had an effect on my memory i also have been getting troubled with muzzy head , it is really upsetting .When i had a blood test my ESR was high which ment i had inflammation there was another but i cant remember :roll: /they also do other tests with blotting paper , they put it in your eye lid and see how wet it goes.

    I hope I have been some help and you can sort out what is going on with you. .................jilly
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
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    jilly wrote:
    they also do other tests with blotting paper , they put it in your eye lid and see how wet it goes. jilly

    Hi Jilly

    That is the test that I had done all those years ago and was diagnosed with dry eyes but no mention of sjogrens.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi....slightly OT but since Nov I have been suffering with my eyes streaming.....looks as if I'm crying a lot of the time. Eventually mentioned it to the GP who said go to the optician....I was due my eye test so went to see him...he does laser surgery......He did a few tests and said you have dry eye syndrome because of your arthritis probably....OA ...I thought it was only RA...he gave me eyedrops and said if it didnt sort itself out go back to the GP......went back to the GP....saw another one.....she said its blepharitis....its chronic but you can get rid of it although it will come back?? she gave me a leaflet and it stressed the best thing was eye hygeine.....very hot facecloth...over your eys for about 10 mins....obviously keep soaking the flannel in the very hot water {every 2 mins or so.}immediately after that massage tops and bottom eyelids then wash them with sterile water...believe it or not it has worked wonders. Sorry for going OT
    Love
    Hileena
  • CarlyF
    CarlyF Member Posts: 76
    edited 30. Nov -1, 00:00
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    Hi,

    I'm new here also and just my lil 2 cents...

    Me and my body knows that when i'm having a flare I get burning dry / gritty eyes, my voice goes hoarse and my mouth goes dry...

    However when I mention to my rhuemy about this, he asked me "Can you cry?" and i said yes ofc, and his response was 'you don't have dry eyes then'. I know from reading (after) about this that crying, although wet doesn't give you the lubrication your eyes need so I think his statement is wrong but i didn't challenge him then because I didn't have any knowledge as ammo.

    I figure though as long as its not causing me serious problems its just another sympton to manage and I buy eye drops when i need them (the pharmacist recommended good quality drops), and i read online that drinking small sips of water helps with ur mouth (not too much or you will pee lots!) And don't chew gum as that stimulates excessive acid in your stomach. I have my dentist keep an eye on my teeth/mouth as dry mouth can cause issues in there.

    Thought i'd mention my experience to help you with your journey.
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hello nanasue and everyone else!

    I have had dry eyes and mouth for years but, for me too the hoarse voice has been the biggest problem. I had always assumed that the dryness was Sjogrens secondary to the RA but never been formally diagnosed.

    However, recently I have had vision problems and it seems that my eye is scarred now because at some point, the eyelid has stuck to the eye and caused damage to the front of the eye. After a lot of to-ing and fro-ing between the GP and the optician recently I have now been referred to the eye hospital for investigations. I thought the dry gritty eyes were just an irriation, I didn't realise that they could actually cause eye damage so, in retrospect, I wish I had brough this up with the docs sooner. :sad:

    Meantime, I use artificial tears and I an eye cream at night, to prevent the eyelids sticking (both are prescribed by my GP) and I buy Biotene mouthwash and toothpaste and Boots Dry Mouth Spray, which do help with the dry mouth.

    Given my current eye problems, I woud advise you to visit the optician in the first instance for advice, rather than just leaving it.

    Good luck!

    Love Tilly xxx
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
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    Hi nanasue
    Glad the others can help cause I can't. I just want to wish you luck
    with your appointment on 15th
    Take care and I hope your rheummy person is helpful.
    Juliepf x
  • CarlyF
    CarlyF Member Posts: 76
    edited 30. Nov -1, 00:00
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    Tilly,

    Thanks for sharing your experiences, i think I will re-raise my dryness at my next appointment.

    Carly
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hi Carly

    Think that would be a good idea, just to be on the safe side.

    Good luck with it!

    Tilly xxx