Suffering right now with dry eyes and dry nasal passages

[JojoluvsLG72]

Hi all, I'm 52. And been suffering with what I believe to be sjogren's. I've had issues on and off with dry eyes and nose for years. Alongside this I also have tinnitus, hashimoto's thyroiditis, fibromyalgia.. I'd love to hear from others going through sjogren's and how was yours diagnosed? At moment my eyes are really dry and worser still, my nasal passages to the point where at times I could blow nose and hard flat scabs come out of there with some blood on them. I feel extremely tired as well with this. What things do you use to help with this. I had a saline nasal spray but its now out of date ( well it's been opened longer than 30 days basically) so can't use. I'm tempted to 2 get some relief up nose. What are your symptoms and what relieves yours ? Is there an actual blood test to test for sjogren's?

Many thanks 😊

[Pippydo]

I was diagnosed with Sjorgrens about 25 years ago after repeated salivary gland infections, one so severe I had to have my left gland removed, as a result I now have real problems with my teeth despite using artificial saliva. I have punctual plugs in both eyes which has really helped reducing the number of eye infections, I was hospitalised with a corneal ulcer before diagnosis. I also have Lymphocytic Interstitial pneumonitis as a direct result of Sjorgrens as my lungs were never checked until it was too late. Blood tests and symptoms should ensure a diagnosis but it’s a complicated disease! Hope you get diagnosis and treatment soon!

[StriatedCaracara]

There is an Anti Nuclear Antibody (ANA)) blood test that I learnt we have the right to ask GP for. If this is positive, then using the same sample, they can test for specifiic Ro and La antibodies if the GP requested this when they submitted the sample.

It is good if any positive ANA result is followed by what is called a full ENA screen however , which includes Ro and La, in case symptoms are due to another systemic autoimmune disease.

There are steroid nose sprays that GPs can prescribe.

My dry eye and nose issues got worse following covid infection March 2020.

I believe I had a progression of autoimmune symptoms following covid.

I have not been diagnosed with Sjogrens, but instead with Undifferentiated Connective Tissue Disorder ( UCTD) which basically means they cannot define what is causing systemic autoimmune syndrome symptoms.

My symptoms are more similar to Lupus where patients can also have Dry Eye Disease (DED) and / or Secondary Sjogrens

I feel in my case the nose and sinuses, as well as the gut, have be impacted - because so much of the immune system is focused there as entry points for microbes etc. If we have an immune system that has gone wrong, it easily gets out of control a bit making us more sensitive. Once this happens I flare with joint pain and fevers etc too.

Having regular routines to clear nose when I wash, after being out, as well using saline I find help a bit.

Hope this helps. I have found it difficult to get testing done. Even my full ENA screen missed some antibodies. Never had La tested. Can't seem at the moment, to get any repeat testing done to get results for the ones that were missed.

Hope all goes well and you get answers soon.

[FlowerWoman]

hello, I’m sorry you are suffering with this, especially as you have so much else going on. It’s quite common for Sjögrens to be alongside other diseases unfortunately. There are blood tests but not everyone tests positive, I tested positive on a lip biopsy, but you can be diagnosed on symptoms alone. It would be good to see a rheumatologist who understands Sjogrens. For nasal dryness I use a saline spray for moisture and cleaning (blowing it afterwards) and then Nozoil before bed to moisturise and soothe. I got it online at chemist4u but I’m sure lots of places sell it, I just didn’t find it in any local chemists. For other symptoms it might be worth a look at sjogrensadvocate.com which is full of advice on getting diagnosed etc. Good luck with it.

[Alexia01]

hi there. Sorry to hear you are struggling. This is a really difficult disease and the symptoms can be very hard to manage.

I have lupus, sjogrens and fibro and I struggle a lot with dry eyes and oesophageal motility amongst other things!

I went to the GP and asked for an ANA blood test to start my diagnoses journey. After years of not knowing what was wrong I eventually developed a rash so looked into lupus and lots of symptoms matched. My GP reluctantly agreed, results came back positive so I was sent to rhumatology. At that appointment I was told my bloods showed a positive Anti-Ro which indicated more Sjogrens, but as my symptoms at the time were more lupus I was diagnosed with having a bit of both! My symptoms now are much more Sjogrens though.

One thing I find useful in flares is a drug called Pilocarprine. You can take it on and off when things are particularly bad. It helps increase saliva production and some people find it helpful for eyes too.

With regards to eyes I would suggest you see a private dry eye specialist. I see the NHS ophthalmologists through the hospital, but I also paid for a private assessment and the investigations he did were so much better and well worth the money.

I have learnt that the lupus/sjogrens is attacking my lacrimal glands, which is the main gland that produces the tears. But the other significant issue is that I have also developed meibomian gland dysfunction (likely as a result of having dry eyes for a long time). The meibomain glands put oil into the tear to help lubricate the eye and stop the tears evaporating so quickly. So if they are not working properly this massively increases symptoms of dry eye.

At my private assessment they scanned my meibomain glands and I found I have 30% not working in one eye and 20% not working in the other.

To help this I am now on a strict routine every morning and night

- heated eye mask for 10 mins

- massage to unblock the meibomian glands

- clean lids with thoroughly

I use Theoloz drops throughout the day, and theoloz gel drops at night.

I also have a drop call Ikervis ( which is the brand name for ciclosporin) which is an immunosuppressant that helps improve the function of the lacrimal gland.

Punctual plugs have been advised if it continues to get worse.

Apologies if there is too much information, but I would urge you to seek help. Particularly for your eyes. For years I just tried different drops and tried to manage on my own and it has no doubt caused further problems for me. I really wish I had this throughly investigated sooner.

The good news is things are improving with my eyes as long as I stay on top of the routines, and I feel lots better for knowing exactly what’s going on.

Hope that’s been helpful, best of luck to you and keep us updated xx

[Oscaromega]

I was diagnosed with Primary Sjorgrens, about 10 years ago, following 2 to 3 years of severe arm and hand pain led to bi-lateral carpal tunnel surgery. A different joint pain then started in my hands. As Rheumatoid Arthritis is in my family, my GP referred me to Rheumatology. I was told that osteoarthritis was the cause of the pain but the consultant listened to my chest, asking if I was breathless. I was, but put it down to aging.

A long process of saliva and eye moisture tests and bloods I believe, eventually confirmed the Sjorgren's diagnosis with Interstitial lung disease.

I've been taking Hydroxychloroquine ever since.

I don't suffer too much with my nose but

I manage the eye dryness with Hycosan Extra drops (ophalmologist recommended), eye heat pad and keeping my eye area as clean as possible.

I've had a dry mouth for years, and my teeth are awful, but have prescribed mouthwash, gel and toothpaste and regular dental checkups. I drink plenty of water.

As has been said. Sjorgrens is a complex disease to diagnose. In my experience it is manageable but everyone is different.

I sincerely hope you find some answers and some relief.

[dg70]

There are things you can do now and things you can do longer term. Longer term see an optician or ophthalmologist re. dry eye, they should now a lot about it. They can prescribe drops and I use a night gel at night. You can by something like hylo tears for the day, several times a day and hylo night eye gel for overnight (it lasts longer) any chemist will do them which will tide you over until you see an eye specialist. A heated eye mask (usb) will do wonders twice a day for 10 to 15 minutes, it's a real relax time for me. You need to keep the meibomian glands in your eyes flowing freely with oil. This helps with dry eye and helps keep your tears in your eye thus they dry out less often. I use savlon or E45 up my nose rubbed gently inside it when its scabby and often vaseline overnight as night time is when eyes, mouth and nose dry out more. If you stop it drying out it shouldn't get scabby. xylimelts or anything xylitol based for my mouth when its dry and you can leave a tablet in your mouth overnight to help. There is no sugar in them and xylitol is actually good for your teeth and gums. Not cheap but better than loads of tooth decay and a dry mouth in itself will promote teeth and gun issues. Keep you moisture levels up in your rooms, use a humidifier. But the best thing is hydroxychloroquine tablets (only from a Rheumatologist) as I am a lot better since I have been taking it for a few years. Before taking it my nose was always scabby and my tongue was often stuck to the roof of my mouth during the night and mouth dry as a bone. Eyes were so sore. Things have improved but you need to be vigilant, get professional advice, see what your gp can get you on prescription (if in the UK) and get to a Rheumatologist (autoimmune specialist one is a must) to see if you have Sjogrens disease. Sjogrens really started showing just prior to menopause. If your down below area is dry then a ph balanced moisturiser like Balance Activ will make things slightly more pleasant when used every day. Dry down below for women is a big symptom of Sjogrens too. Fatigue is the biggest clue if you have Sjogrens, you generally feel wiped out every day with not much relief from it.

It has taken many years and a private consultation with a Sjogrens specialist to get diagnosed as my bloods are negative. I also had Lupus diagnosed at the same time when I was 51 but things have been wrong since my 20s. Menopause puts a rocket under any underlying symptom with autoimmune I am reliably told.

I very much feel for you but get to the chemist (they can advise you to a degree), get that USB charging heated eye mask off a well know store (beginning with A, £25 roughly, best money you will spend believe me) and then see the specialists re. eyes and Sjogrens. Let me know how you go. xx