Un ophtalmologiste peut-il diagnostiquer la possibilité du syndrome de Sjogren ?

Allergies, sang et système immunitaire
1

In the last five years:  Dry eyes, IBS, Laryngopharyngeal reflux - which causes me to lose my voice if I talk for any length of time.  I had to leave the choir I belonged to as I could hardly speak after rehearsals - Fibromyalgia, Lichen Planus (autoimmune), worsening of dry eyes.

I saw my GP last week and raised the possibility of Sjogren's.  I don't have a dry mouth, however.  He checked back, saw I had an ANA blood test last year which was negative and that was that.  On the NHS pages it says of blood tests  'But not everyone with Sjögren's syndrome has these antibodies, so you may still have the condition even if a blood test doesn't find them.'   I should have mentioned this, but I didn't, unfortunately.  I think because he was so confident that I didn't have it.

 I'll be seeing an ophthalmologist in January about my dry eyes.  Will he/she be able to tell from the pattern of dryness in my eyes if Sjogren's is a possibility?

1 « J'aime »
2

Not necessarily, I'm afraid Cheetah. This condition is very devious and hard to diagnose. That, and the fact that a lot of doctors - even some rheumatologists - don't know enough about it, means that it can take many years to get a diagnosis. I'm sorry to say your experience isn't unique. I think you'll just have to keep trying.

It took me 10 years from my first SS symptoms to get a diagnosis. However, I have to say I wasn't pushing for one as my symptoms weren't as bad as yours.

1 « J'aime »
3

Je suis d'accord avec toi Lilly. Mon rhumatologue ne connaît pas l'implication du système nerveux central dans le syndrome de Sjogren et veut m'envoyer à une équipe multidisciplinaire à Londres parce qu'elle pense que je suis trop compliquée ! Londres est à 90 miles de distance et bien que j'irai bien sûr, cela semble si stupide alors que toutes les informations sont disponibles sur le site web de la BSSA.

Je ne peux pas ouvrir mes yeux secs le matin parce que mes globes oculaires sont collés à l'intérieur de mes paupières, donc je dois d'abord y mettre des gouttes, mais il n'a été question à aucun moment de consulter un ophtalmologiste. Je vais devoir insister pour cela, je pense, parce que mon œil gauche a l'impression d'avoir perdu un peu de peau. Je suis fatiguée de devoir insister pour chaque petite chose, c'est épuisant et ils devraient savoir quoi faire !!! Désolée, la tirade est terminée.

1 « J'aime »
4

Hi Maggie,

I can really sympathise with that thing about waking up with your eyelids stuck to your eyeballs. It's horrible, isn't it? Especially if you're getting it in both eyes at the same time. I went through a phase of that, but fortunately only in my right eye. This was a year or two after I got my first SS symptoms (dry mouth and a first-tingling, then-numb big toe). The eye used to bleed at the outer corner sometimes too.

Strange as it sounds, I didn't even recognise it as being due to dryness at the time. This was still 3-4 years before I'd started to suspect I had SS and 6-7 years before I got diagnosed. It was my GP who explained it was down to dryness, and told me to use OTC eyedrops regularly. It clearly didn't occur to her to make the connection between this new symptom and the dry mouth and peripheral tingling sensations I'd reported several times in the previous year or so. She just said all three were down to old age, as I was in my early 50s. In all fairness, I still hadn't figured out it was SS at this point either - but then again, she was supposed to be the doctor!

Fortunately, the extreme dryness in my right eye cleared up after about six months - during which time I got two attacks of conjunctivitis - and has never returned at that level. These days, it's the other eye that's most affected. That's how SS goes with me - moves from one symptom to another and to alternating parts of my body. At the moment, I'm still able to manage it with OTC drops, but I'm now using a different, superior brand recommended by a UK optician. They're more expensive than the basic stuff, but I don't have to use them so often and they don't sting at all.

Another thing that an optician recommended when I was in the stuck-eyelid phase was to apply moderately hot compresses to my eyes every morning. They just made my eyes more sore, without relieving the dryness, but I've heard that they work very well for some people.

As you're in the UK, I'm wondering whether you've consulted an optician about this? They're very good, and don't just do sight tests. They can do the basic test for dryness and will write to your GP if they feel it's serious. This might just get things moving.

I hope you can start finding solutions soon, or alternatively, that your dry eyes will go into a long remission, as happened to me. Incidentally, that can be a problem too. In some people the physical signs of SS (as well as the symptoms) can temporarily disappear almost overnight, making you look a liar when you finally attend your hard-won consultation with a specialist. Only to return six months later when you've been "cleared", of course. I'm afraid the frustrations of being an SS sufferer can be endless.

1 « J'aime »
5

Merci Lilly. J'ai essayé de nombreuses gouttes pour les yeux au cours des vingt dernières années environ, même celles fabriquées par l'hôpital ophtalmologique Moorefields pour les patients post-opératoires, mais elles ont vraiment fait piquer mes yeux, donc j'ai opté pour vscotears ou blink plus, toutes deux sans conservateur, ce qui les rend plus chères, boo boo ! Je vais bien pendant la journée tant que je continue à les appliquer, mais le matin est un cauchemar ! J'ai acheté un masque avec des coussinets chauffants à porter la nuit, mais cela n'a pas fonctionné malheureusement. Une chose qui aide, ce sont les lunettes à chambre. Elles empêchent le vent, la poussière et le pollen de pénétrer et sont une bénédiction car je sors beaucoup avec mon chien par tous les temps.

Quand votre œil a saigné, cela a dû être très effrayant ! Que vous a dit le médecin généraliste à ce sujet ?

Je consulte un opticien tous les six mois car je prends de l'hydroxychloroquine et elle n'a rien dit jusqu'à présent sur d'éventuels dommages liés à la sécheresse, mais cela me semble endommagé. Probablement mon imagination.

Toutes mes meilleures pensées, Maggie

1 « J'aime »
6

Hi Maggie,

I'm surprised your optician hasn't said anything about dryness. My UK optician always does the test for dryness on my yearly visits. Two years ago she asked me to come back after six months, as the dryness was making my vision very blurry in my left eye, and she said I was getting to the point where I could be at risk of abrasions. However, after six months of using the drops she recommended, the dryness was back to "normal" levels (for me, that is). Maybe you should ask about this.

What did my GP say about my super-dry right eye bleeding from the outer corner all those years ago? If there are other members of the regular SS crew reading this, I can just hear the answer coming from some of them in chorus. So... altogether please: "Old age"! These boards are littered with tales of people being told their SS symptoms were all down to old age, even when they were only in their 50s. There've even been reports of rheumatologists and ophthalmologists saying the same thing, not just GPs.

Just to clarify: my eyeball wasn't bleeding. The bleeding came from cracks in the skin at the outer edge of my eye. The hot compresses made them worse. I'd had the same painful cracks at both corners of my mouth a year or so earlier, when my mouth was very dry.

The eye cracks come back from time to time, always when my eyes are dry. I just ignore them, and put in my drops more frequently. I've had this on and off for the past 20 years now and I know they'll eventually heal. Fortunately I've never had a repeat of the cracks at the corners of my mouth. That was incredibly painful, as they'd open up and bleed every time I tried to open my mouth to eat. I saw my GP and two dentists during the 6-12 months this was going on, and none of them had the faintest idea what was going on.

I too wear industrial goggles when I go out in exceptionally cold, dry, windy weather. I got them from my UK optician, so they're optically correct. I agree, they're a godsend, even if I do get a few funny looks. (My compatriots are less polite than the Brits, and don't hesitate to stare!)

7

I dealt with my eye doctor for several years with him trying to treat my dry eye. And he really started making me angry and I finally just fired him and found a new eye doctor. And I also went to see an ophthalmologist on my own. I can do that because I live in the US and not even my insurance requires a referral. He put plugs in my tear ducts. That supposed to help my dry eye. Between that and the Restasis drops and just standard lubricating eye drops all day my eyes are doing okay now. My mouth is another story. My rheumatologist tried both of the drugs that can help with dry mouth and neither of them was going to work for me.

All that being said I do not have a positive test for a Sjogren's syndrome. But my blood test came back negative too. But in a couple of weeks I am scheduled to have my lip biopsied. And it's my understanding that that's a better test to determine SS.

8

Merci à vous deux pour vos réponses utiles. J'avais également des fissures aux coins de ma bouche dues à une candidose buccale, je pense, causée par la sécheresse buccale. J'ai utilisé la crème Canesten qui a bien fonctionné, pas dans ma bouche, mais sur les coins ! Je prends maintenant 4 capsules de coco quotidiennement et cela m'a aidé à éloigner la candidose buccale car elle est antifongique.

Je vais parler à l'opticien de la sécheresse oculaire et exprimer mes craintes car mon œil gauche en particulier ne se sent vraiment pas bien du tout malgré toutes les gouttes et les gels et la vision est très floue. J'ai des cataractes qui s'aggravent très rapidement, ce qu'elle a dit être dû à une maladie systémique, donc elle doit être sur le qui-vive, je pense ! Peut-être est-il temps de passer aux tampons oculaires, j'en discuterai aussi, merci.