Hi Do i have Sjogrens?

[fizzy42]

Hi, i'd appreciate any feedback please.

I started do have a dry mouth 2017, it went to another level 2023. I had salivary glands swelling up, earache in both ears. Went down to see a nurse at health centre, couldn't get to see a gp! I thought i might have a stone in the glands? Was a waste of time really, she told me i had a virus?

Going forward still have extremely dry mouth, dry eyes which ive had for years, hoarse voice, also thyroiditus, glands in neck are still swollen and painful. Finally got to see a gp who referred me to ent. Saw ent had an endoscope, very red vocal cords. He arranged to have bloods taken to rule out things including autoimmune diseases.

The results came back as Borderline? I had 1 positive for Anti-nuclear Abs titre 2 1:80

GP was not interested at all, and said it was nothing? Any ideas on this please?

Would appreciate any input, it doesn't feel like nothing to me when my tongue is dried out and sticking to roof of mouth in the morning. I also have bad Osteoarthritus, and peripheral neuropathy.

Thanks for reading, Lynda

[Pippydo]

I struggled for a few years to get a diagnosis despite getting repeated infections in saliva gland leading eventually to having one removed. I decided to get a private referral and at that stage Sjorgrens was discovered. I have punctual plugs in both eyes after a corneal ulcer, I’m now being seen by a rheumatologist and a lung specialist as I was diagnosed with LIP 2 years ago. I’d keep trying to get a referral for further investigation as if it is Sjorgrens you need regular checks and medication. Good luck!

[fizzy42 in reply to Pippydo]

Thanks so much! It is a difficult to get a diagnosis one way or the other. Will ask to see a rheumatologist. Sounds like its affected you a lot, Its difficult some days isnt it? Takecare 🌸

[dg70]

You need to see a rheumatologist. They can order extra bloods like dsdna. They can take a lip biopsy and do a schirmers test for your eyes. An ophthalmologist specialist in dry eye issues can also do further tests and tell if you have sjgorens. Took me years to find the right person and get a diagnosis. My bloods are negative except dsdna but that is quite common. Keep a note of symptoms take pictures. Pay for a private appointment with a specialist autoimmune rheumatologist. Many of us have and it's worth it. In the meantime xylimelts are brilliant for overnight dry mouth in fact they encourage and improve your saliva. They stick on your gum when you go off to sleep and slow release. I use a couple per night. Medication like pilocarpine will help a lot. If your eyes are sore buy a heated usb eye mask and use for 15 to 20 minutes a day, twice a day to keep your meibomium glands oil flowing. If you buy eye drops like hylotears then they must be preservative free. An optician can advise on drops. If you are in the UK there are specialist rheumatoligists who take private appointments from anywhere in the country. You can transfer back to nhs after. I always advocate exhausting all avenues before moving on to the possibility it's something else. I ended up with sjogrens and lupus diagnosis. If you are anywhere near the south of England I can let you know where you could go for a diagnosis. Don't give up, your bloods may be borderline but in a few months they may not be. I now have positive rf which I didn't have 2 years ago. If its sjogrens you need medication so don't give up.

[fizzy42 in reply to dg70]

Hi thanks for your very helpful reply 😊 I do live in the South West, and would be grateful for help to find a rheumatologist who specialises in Sjogrens. I agree definitely worth paying for first consultation as well 🌻🌸

[Hidden]

Agree with the comment to see a rheumatologist. My only symptom was dry mouth and the diagnosis was conclusive with a lip biopsy. My ANA is high (1:1280 or more) but all other tests were normal. I take cevimeline, 400mg hydroxychloroquine, xylimelts, clinpro 5000 toothpaste, xylimelts, pur gum, zolli pops. Lots of water. Keep reading about Sjogren's.

[fizzy42 in reply to Hidden]

Hi thanks i will arrange an appointment to see rheumatologist definitely! Gosh you have a very high ANA! Will get some xylimelts. Thank you for helpful advice 😊

[Hidden]

The ANA is a very high titer but from 2017 when I was diagnosed with UCTD and put on hydroxychloroquine (which calmed my issues at the time) until 2023 when dry mouth came to stay, I had zero symptoms. ...Completely dormant although the ANA stayed high. I was the one that told my rheumatologist to check for Sjögren's. That is more typical than unusual. We have to study and be our own advocates. Squeaky wheel.

[fizzy42 in reply to Hidden]

We certainly do have to be our own advocates! It’s interesting yours was dormant for so long.

[dg70]

Gosh very fortuitous. If you can get to Swindon dr elizabeth price sees private patients at swindon hospital. Cost is roughly £150 for about 45 mins which is pretty good. I can pass on her private secretary's details if you can make it there. She is a top expert in sjogren disease. Your gp can write a private referral letter or you may be able to refer yourself. Her secretary will know. It's worth travelling there. She diagnosed me and I'm forever grateful. I got sent to her by chance and she's so helpful.

[fizzy42 in reply to dg70]

Hi that would be great thank you, i will email her secretary this week. I think we’re only about 2 hours from Swindon, so very doable. Many Thanks 🌻

[dg70 in reply to fizzy42]

It may be a good idea. It rules things in or out. Some people travel from yorkshire or Wales to see her so 2 hours is not bad compared to that. I booked through the private part of Swindon Hospital called the Shalbourne Private Clinic which puts back money into the nhs and is run from swindon hospital. I think this makes it cheaper than BMI or Circle private hospitals. You can look up one or two podcats she has down via you tube BSSA Dr Elizabeth Price. They are very informative viewing. Good luck with everything.

[fizzy42 in reply to dg70]

Thank you for your reply i will definitely do this 😊

[Simonebirds]

Hello I have sjogren and have those symptoms . Keep in mind some ppl have sjogren and labs do not indicate . Also , sjogren is much more than dryness . I have neuropathy as well . See a rheumatologist although I hate to admit , some are not that effective . Good luck .

[LindyK]

I have been through a similar experience as you and have the same symptoms. Try Xylimelts for dry mouth. I use them at night and can’t live without them. Don’t expect anything from doctors in the way of help or compassion. Look into low dose naltrexone (LDN), Methylene Blue, and red light/NIR therapy.

[arvine in reply to LindyK]

Can you tell me about xylimelts , Inam in Canada currently using biotene a spray for mouth which gets extremely dry, parched, cotton mouth, mostly through night and on waking, not as moticeable through day tike, so not sure if we have something compreable in Canada, thank you

[Rakdanit in reply to arvine]

Yes, Amazon has them. They are concave one side which is how they "stick" to your gum. I also use Biotene Flavor-Free gel, which helps, but I don't like the feel of it. I've heard Lubricity is good, but the last time I tried it, I think I didn't like the taste, but I don't remember why. I'm very sensitive to mint, so my choices are limited.

[LindyK in reply to arvine]

You can get them on Amazon. I use four in my mouth each night (top and bottom on both sides of mouth) and sometimes add a couple more before morning because they eventually dissolve in the mouth while your sleep. They are disks that stick to the cheeks of the mouth. I hope you’re able to order them from Canada. I would not be able to sleep without them; my mouth gets so dry.

[fizzy42]

Hi i don’t personally use the Xylimelts , ive heard good things about them though. Have you tried amazon? Takecare 😊