Hi all, I'm new to this page. I have probably sjogren's. I have dry mouth eyes, possibly small fibre neuropathy, and gut motility issues. I am sero neg for sjogren's. I have got autoimmune inflammatory arthritis, and autoimmune primary billary cholangitis and hypothyroidism. Had lip bx last yr, it was inconclusive, had atrophy salivary gland, and slight inflammation. Rheumatologist feels that if I had bx during flare it would have been positive.
In the last 6 weeks I have had blurred vision, gritty feeling in eyes , headaches/pressure in head, and ringing in ears especially left ear. Saw ent and I'm for MRI, saw optometrist and my vision has deteriorated dramatically since March, also she said my eyes were dry but not dry enough to cause vision deterioration.
Going to see opthalmology Dr. On Wednesday.
I'm wondering gave any of you had this before. Does it sound like a sjogren's issue. Thank you
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Nellies47
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Hi I have diagnosed sjogrens but negative blood tests. I spent years going to optometrists, NHS opthalmology as my eyes were blurring. I go out and they run like mad if I don't wear glasses. Always told my prescription hasn't changed but eyes blur. Eventually got a big cyst on my eyeball, I went to a private ophthalmologist and said I had runny eyes, dry mouth and nose. He said possibly sjogrens and referred me to a sjogrens specialist rhuematologist. It had to get that bad before I got answers. I am dsdna positive so found out I had lupus as well. Ring around and maybe find a private ophthalmologist who knows about sjogrens . A lot don't! You'll know for sure then. 😃
Hi, thank you. Gosh you must have had a lot if pain with the cyst. I do have significantly reduced vision as well as blurred vision as per optometrist. I wear glasses and they were renewed in March 22, and my vision is now near "not allowed to drive"🥺. I'm seeing an ophthalmologist tomorrow, not sure re her sjogren's experience thought 🤔 .
The cyst didn't hurt just felt annoying and it was easily removed and cauterised but it's because I was undiagnosed and I had no eye drops or medication. They kept having burst veins as well. I go to a private eye specialist now once a year for a thorough check and scans. Now I have drops four times a day and actimist spray on top, medication and use a heated eye mask twice a day for ten mins things are under control. My issue is the oil in my meibomium glands is thick like butter not oily so it doesn't hold the tears in. I have my eye glands layered once a year now and use the mask every day and the pain and soreness is hardly there. It's a massive job which requires daily attention to keep eyes under control. Dry eyes is common as you get older or have contacts so may not be sjogrens. You need to have very dry mouth and dry and sore down below and daily exhaustion to be sure to be diagnosed without positive bloods I think. Hope you find help soon.
Hi. Yes I have very dry gritty eyes + mouth, mouth ulcers, dry down below, urinary frequency, frequent uti's, severe fatigue, I nap daily, painful joints in hands feet knees and elbow, I get pain in the glands under my jaw. I get pain in my ears, ENT says ears very dry, had emollient and steroids injected into them. Also need to drink lots when I eat as food can get stuck, very slow gut motility.......so lots of symptoms. Sjogren's goes with PBC too.Your eye routine sounds gruelling, but it's great you have successfully managed to control it. I hope I get some help tomorrow. Thanks again
Sounds like Sjogrens! You need to see a Rheumatologist with Sjogrens experience really as they can give you medication you may need i.e. hydroxychloroquine and pilocarpine or carbocisteine. At least you should get eye drops and oil spray but sounds like you need that full going over from a Rheumatologist as well. The good thing about finding a good Rheumatology clinic is they can pull all the other consultants together and co-ordinate your treatment with each specialist you may need. Anyway that's the ideal. I was going private but seeing each consultant was costing a bomb so I've opted for an NHS Lupus centre of excellence in Rheumatology where they will hopefully do all I just said. Anyway that's what they promise. I wouldn't knock the odd private appointment though if you can afford it as you get to choose who you see and where you see them and for a little longer than on the NHS per appointment. Without seeing a Rheumatologist privately I would not have been diagnosed as NHS kept leaving me undiagnosed despite reeling off all my symptoms. Now I'm diagnosed I'm giving the NHS another go. Hope it goes well for you tomorrow. I can't recommend a USB eye mask twice a day for 10 mins, it gives so much relief - about £20 on amazon. Microwave ones don't stay hot long enough!
Hi. Sorry for delay. Thank you for all that. I cant seem to find a rheumatologist that speacilizes in sjogrens. Definitly a great plan to have all consultants working together , i attend 4 separate consultants privately. Its so expensive. My opthamologist gave me a hydroblend eye mask , its ok but ill try the USB one , thanks again. Nelly
Me too. I have seen four different consultants privately in the last year or so. It soon adds up and I don't think they all co-ordinate together really. Plus all our records are kept in private hospitals so if you go in to a&e you have to explain all your issues all over again as I don't think my nhs records even say I have lupus or sjogrens because I've been going private. It's just getting stupidly expensive now with more than one consultant in the mix but the wait for Bath Rheumatology NHS I was just told is half a year! Let's hope nothing goes too wrong before then. Maybe you need to look for a Rheumatologist that at least has a specialism in autoimmune conditions. It's the lottery of where you live and what your consultant specialises in as to what kind of care you get. You'll have to let me know how the hydroblend eye mask works I saw its a moist heat but goes in the microwave. I've had the usb one for over a year and its still going strong and I can keep it on up to 20 mins if my eyes are particularly sore without it losing temperature at all.
Oh usb sounds great. Mine def looses heat. It dose help though. My eyes are so bad at moment , driving very uncomfortable. Also left ear now sore and ringing persist, getting fwd up. I dont think plaquenil is working, im on it now over a year. I had a trial of methotrexate but nausea was terrible, then I was on Imuran and I had projectile vomiting for 4 hours.Is there anything else. I'm due back to see rheumatologist soon.
I'm on pilocarpine tablets (from the rheumatologist) which really help, eyes, mouth and internally giving moisture. Side effect have too much in one go and you get diarrhea a lot! I can manage half a tablet a few times a day with food without issues. Along with the eye mask and drops, my eyes are no longer in pain and sore most of the day. I hope you get something sorted. I always have to wear glasses when driving as the fan or aircon makes my eyes so sore so quick. I get tinnitus too. I either put cotton wool in my bad ear at night or play my phone with a rain noise all night when its bad. It's finding things that make your life a little easier and what works for me might not work for you. I hope you get relief soon. ❤️
Hi thank you for all that, the advice is so helpful. Yes the tinnitus can be very hard to cope with in a quite environment. I find driving for make the tinnitus seem louder, and night time is very hard.
I spent many nights looking for what was making a noise. Turning all plugs off etc.. when we turned all the power off in the house i then realised I suddenly had developed tinnitus. Relief mixed with annoyance that this wasn't going away. I just have music or TV on most of the time and it doesn't bother me. Like you it's just the quiet night which is difficult. I take a sleeping pill now and then to catch up on sleep.
Reading your post made me chuckle as I did the same. I turned everything off and still had this sound on my left ear. Mine has a simple melody or sometimes I hear a flatline sound. Strange. What made it so much worse was the Pfizer vaccine. A friend of mine lost a hearing on one ear after the first vaccine. An emergency steroids therapy helped but she now has only half capacity back. I have to wear earplug on my left ear to fall asleep too. Am waiting for a physio therapy session for some sort of self help. Meanwhile I do acupressure massage (from Youtube) and it seems to help. It is relaxing so all around good.
Hot usb eye mask does wonders for soothing. Blurry eyes I had for years. My nearsight is now awful. Its the dry eyes blurring your vision. Saw 4 ophthalmologists on NHS before paying private. Had the schirmers test, this ophthalmologist explained your vision will blur as your eyes don't keep the tears in and draining. Blocked meibomium glands are my issue. My tears just run out all the time. You will get headaches as your eyes are constantly trying to focus through the haze. It takes not just an ophthalmologist but a good ophthalmologist in my experience to diagnose sjogrens same with rheumatologists.
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