Diagnosed with Sjogren's syndrome

I have had dry mouth and eyes for along time now and often had a very sore tongue which was very red and split with ulcer like blobs along the edge and it was misery to eat and drink.

After stopping the Acupan pain killers which didn't seem to do much anyway and the GP decided I was only allowed one a day and the maximum was 6 which was the only way it helped with the pain, my mouth got better, but not the eye.

I have a cataract in one eye and have to be careful when out, especially when trying to do some gardening, as bits blow into my eye and always get stuck causing great irritation, so it was suggested to use moisturising eye drops.

So I went to see a rhuematologist for the first time in ages and he was a very kind and likeable fellow.

He examined me and asked questions, and looked into my eyes and asked "Do you have dry eyes and mouth and have you been diagnosed with Sicca Syndrome? Why yes i said,

The real syndrome is Sjogren's, which is much much worse. It is an autoimmune disorder and the body's immune system attacks the body's own system. It mainly attacks the tear glands in the eye and mouth.

So I have been prescribed a drug used as an anti malaria drug called Hydroxychloroquine sulphate to try for 4 months.

Now I know why I have a bad reaction to many drugs, and it does say in the leaflet the doc gave me that they recommend not to take nan medication unless absolutely necessary. Especially antibiotics are not good for me.

Here we go! Will let you know how I get on with those pills, providing my GP will issue the prescription each month.

21 Replies

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  • good luck with the new pills. hope you adjust to them and your dryness condition improves. at least you've got a proper diagnosis for what's been happening and so hopefully it can be managed better in future. it all sounds painful. you poor love :-/

  • Thank you Sammicat15. That's very kind of you. Hope you are coping with your illness. the better weather helps, lovely to see the spring buds and flowers appear. :)

  • Hello plumcake ,I was also diagnosed with SS when I got the dx for fibro in feb this year.Feel really overwhelmed at the moment.

    My mouth is sore another tooth just crumbled the other day and I feel so tired I don`t know if this is a flare as we have those the same as fibro.And I look at it as two lots of fatigue lol.

    I don`t see the rheumy till July and don`t know what to exspect.Have you had any of the the test such as the lip biopsy(yuk).

    I`m really battling with Gabapentin at the moment and don`t think they are for me.I`m on 1200mg but reducing to 600mg myself as feel like a zombie and have no emmotions at the mo.

    What you say about antibiotics make a lot of sence to me now,but I do get a lot of uti`s so need them.Can you tell me what nan medication is please.

    So Glad to meet you hun,there is if you got o top of page and click on the green HEALTH above Fibro action a link to a Sjorgrens group,but not many people on it and never get an answer.

    Hugs Butterfly xxx

  • Hi Butterfly

    I haven't had any test to diagnose the Sjorgrens that I know of, the rhuematologist just said do you have dry eyes and mouth, and that he didn't think all my pain and fatigue was down to the Fibro.

    Nan=means any, sorry my brain and fingers don't work together very well. And the leaflet I have on Sjogrens says don't take any meds unless really necessary.

    So far I haven;t had any side effects and i would know by now, as usually if I am going to have a bad reaction to a drug it's instant.

    I am taking 200mg 2x a day, but you reckon to start slowly and alternate. Well I guess I should stick with the specialist's dosage unless I feel they are too much.

    Sorry but I can't think what uti's means.

    Thank you for your comment will have a look at the Sjorgrens group.

    Good luck to you

    Annette xxx

  • sorry it was someone else that mentioned taking the Plaquinil every other day.

  • hi plumcake I have been trying to do this all morninng so here goes again and I hope when I press reply it doe`s it.

    First let me say how sorry I am about about your sister and you must miss her very much.

    UTI`s mean urinary tract infections of which I get a lot.And so have to have antibiotics.But at the moment I am having a really awful time with the gabapentin.

    I did the slow work up to 4 tabs 3 times a day but have just got worse.I`ve bought my self down to 2 tabs and I`m seeing my doctor this evening,as I hate to say this to you with what you told me.But I am having horrid thoughts.

    I had a major breakdown with a suicide attempt in 1999 and really don`t want to go that way again.I`m bouncing of the walls liturely (sic) as I can`t walk a straight line.

    On the 4 tabs I just felt nothing even my hands felt numb,I keep getting so hot and I get dreadful indigestion that is crippling,but can`t take anything for 2hrs and I make sure I eat with them.

    I was diagnosed with fibro in jan this year and there was one blood test that my doctor knew nothing about and only the rheumy would tell me.Well I waited till he called me at home in feb.

    He asked if I had dry eyes I said yes had had for donkies years(I`m58) and had always bought eye drops and carried them in my handbag as well.He then told me I have Sjogrens.

    I don`t see him again till july and would be interested in what the leaflet you have says about medication.If you could let me know before 4.30pm I would appreciate it as I felt my G.P didn`t understand what it was.

    Sorry this is so long,but we have a common interest here not many have Sjogrens or it`ts not been diagnosed,but it is amongst the bloods they take when we are told we have fibro.

    Go to top of page again and about the third one down is Sjogrens but as I say you dont get much info.

    I too have chronic reynouds,it bothers me even in hot weather

    Love and Hugs Butterfly xxx

  • Hi Butterfly

    Thought I'd lost the leaflet, but it was in with the medical stuff I took along for my claimm for DLA. humph!

    It would be better to obtain your own leaflet as it contains a of of info depending on how badly you have this illness.

    You should be able to pick one up from your GP. It is published by ARC ww.arc.org.uk

    it does have a list of Main symptoms and less common symptoms fro treatment.

    I have been prescribed Hydroxycholoroquine at 200mg strength x 2 a day as I have the less common symptoms as well as the common ones.

    There is an organization called BSSA

    Phone 0121 455 6532 or a website bssa.uk.net

    Sorry I can;t help you further but this illness is all new to me. It was diagnosed as Sicca syndrome at first, but wrongly.

    My rhuemy thought my problems with fatigue and pain were not all associated with Fibromyalgia.

    Sigh!!

    Hugs from Annette & Tibbs (my new foster cat) x

  • Hello Annette and my Yorkie says hiya to Tibbs.

    Strange dog loves cats,thinking of getting her one.

    I like you am new to diagnoses both of fibro an Ss only in jan this year.I don`t think all my symptoms are down to fibro either my main being sore eye`s,mouth and fatigue.

    I was told when I was 16 I had fibrositis old fashioned name for fibromyalgia,I`m now 58 and have had a lifetime of pain due to curvature of the spine and an op that did`nt go so well.

    I have had to come off the Gabapentine this week as have not been at all well on them.I have problems with antibiotics and can`t take medications for migraines.Also problems with anathetics.

    I have Reynouds,IBs,restless legs(but that was bought on by op).In other words a bit of an old crock really.

    This evening I decided to go up the 7 wooden steps to see what my garden looked like.O.K I thought nice to see things blooming.

    Turned held onto banister and wall,and promptley sailed down on my bum.

    Thank God my friend was here and in the kitchen,between us we got me up.My right cheek has 3 enormous lumps that are going black and are very uncomfortable.Huge one to the right of my spine and all up my arm,which has torn muscle from a fall last spring.

    I give up Anette,I`m just not safe anymore and starting to feel I might as well put my head in the oven now.If it wasn`t for the fact my friends would kill me I would do it LOL.

    I am not happy to see on computer screen at docs they have now put Fibromyalgia at the top and nothing about SS,so keep having a go at them about it.

    Anyway Anette thanks for info and hope your DLA works out.

    Love and Hugs Jayne xxxxxoh and Tiffay

  • Oh Tiffay you poor woman. you are lucky you had someone there. If i fell there's no one here except Tibbs.

    I told one of the docs that I have been diagnosed with Sjogren;'s but I don't know if he recorded it. But I told the quack at the medical.

    It was my other doc who lost me my DLA in the first place, He lied. So did the tribunal when I appealed against the decision in 2010.

    I had the tribunal in March 2011, when my dear old cat Freddie had just been diagnosed with kidney trouble. Also another medical for my Incapacity Benefit.

    Last year was the worst year of my life. Was hoping this one would be better.

    I have felt suicidal too, but ther gas in the pipes now is no good for that I’ve heard. lol

    Every day is much the same. Hardly anyone calls round or phones me and I dont go out much.

    Have started going swimming again to help relive the depression and also have out on a lot of weight round my tummy since Xmas. But it does exhaust me after. At least I feel alive when I’m swimming. I love snorkelling in the reefs, and I wonder if I will ever get to do that again.

    Last time I went abroad on holiday it was a nightmare a horrid hotel, diabolical food and totally the wrong venue, right at the top of a giant mountain. Wish I had researched it a bit more before booking, plus I was stuck there for a fortnight.

    It had a beautiful view, but it was very hot, it was in north Crete.

    Loads of wild cats and other cats hanging around the hotel. Not looked after either, so I used to go down the hill to feed these 6 little kittles when there was real meat on the menu, they waited for me and I used to go 2 or 3 times a day to fed them. Then had to trudge back up the steep hill.

    I met some nice people there and still friends with one of them from Yorkshire.

    Well this page is not displaying well, so I have made a word doc and will copy and paste this.

    Take care and chin up me dear. Love and hugs Annette & Tibby x x x ?

  • I am unable to find a Sjorgrens group, but found some blogs. Seems to be associated with Raynauds which I also have and schlerderma, which my sister had.

    I say had, as she committed suicide in July 2008 and she was a lovely lady, but full of misery, her mind took over. And I miss the contact with her as we had much in common, but we hadn't met for about10 years as she lived so far away. At the time I was going through break up and divorce so was very hard for me to undertake the journey. x

  • Hello Lynn-FA

    Feels like I have too many illnesess and no one to help. just had my medical for DLA claim yesterday. Forgot to take the names of the pills with me, so the ATOS doc was flustered trying to find the name in a book to write it all down.

    Asked me how a typical day was in my life. Well a typical day is full of nothing much.really.

    I have felt no side effects as yet from Plaquinil, and usually I react pretty quickly if I am going to have a bad reaction.

    I guess I will take them as prescribed unless I feel it would be better to do as you say every other day.

    Thanks for your comment and my best wishes to you. :)

  • Well I felt what could be called normal for a couple of days but this weekend feel miserable and down as hell.

    I guess Easter on your own can be like that especially when the weather's bad as it has turned now. x

  • Hi plumcake,

    Good luck with your new meds, i really hope they work for you. :)

    I have dry mouth and eyes and i have mentioned it too many doctors but they have never mentioned about it, my dentist gives me artificial saliva, its like toothpaste and it helps stop the build up of plaque going hard before brushing and she has said i have to brush atleast 3 times a day.

    hugs, kel xxxx

  • Hi Kel,

    I would go back and ask about being tested for Sjrogrens, as nothing much has helped my problem, I have had gel for dry mouth but it didn't do much. I am always sucking sweets to keep my mouth moister.

    Do you find your eyes are very sensitive in bright light? I always do and my Dad had the same problem. That's why I prefer not to drive at night, as it upsets my eyes.

    Hugs back ~ Annette :)

  • Hi annette,

    Yes my eyes are very sensitive to light and in the car with headlights comming toward me really hurts. I have been to the opticians and i have had something called antiglare put on a pair of glasses to see if that helps. It has cost me £30 but it really hurts that much that if it works i will be glad of paying for it.

    I have a phone call saying they are ready but dont have the money to pay for them yet. I will let you know how they are when i get them.

    kel xxxx

  • Hi Kel

    I had some rose tinted lenses when i was younger as I remember then my eyes were sensitive to light, but not since. Do you have to wear your glasses all the time as I only need mine for close work?

    My eyes seem to play up as soon as i get in the car, even in daylight.

    Hope the anti glare has the desired effect of helping.

    Annette x

  • Hi, no i dont need glasses really, my optition has said they are fine but if it will help with my headaches and focus then he has given me a small prescription and the anti glare to see how they get on.

    So i will just need them on my bad eyes days.

    He told me that he actually thinks it could be my medication that i am on that could be effecting my eyes.

    hugs, kel xxx

  • Oh yes I reckoned my meds were the cause or at least contributing to my dry eyes and mouth.

    always suffered dry mouth and that's cos the GPs I;ve had always insisted i take anti depressants for the Fibro pain etc. which I can't cope with, and don't help anyway.

    I have bought a few off the peg cheapies and I wish they had tinted ones. You can buy clip on shades for your gogs though, but it makes the gogs rather heavy.

  • well at least you know what it is now and its not in your head like everyone else seems to think anything we have is good luck with the new tablets hope they help and you ok on them love to you diddle x

  • Hello Diddle

    Thanks for commenting and yes it is good to know that I have a correct diagnosis, but not too happy about what it is.

    I was told my the ATOS doc that Plaquinil is given to those who have Rhuematoid arthritis and did I have that, to which I couldn't say yay or nay.

    Strangely enough I feel a lot better after seeing the rhuemy.

    Cheers from Annette :) x

  • hello

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