Sjogren's query

[Fibreartist]

Hi everyone,I've had dry eyes and mouth etc for about 10 years. About 8 years ago, a rheumatologist tested my bloods, which were negative, so he said I don't have it. My symptoms had increased, and despite 4 referrals back to rheumatology, there refused to see me.

My optician agrees I have very dry eyes and advised I use drops at least every 30 minutes. My dentist referred me to the maxilofacial doctors at the hospital because of the degree of dryness he could see in my mouth. Food is always getting stuck in my throat, and I have to drink with every meal. My voice is constantly hoarse. So I requested a lip biopsy, as I felt this was the only thing that the rheumatologist would accept. When I was seen, he said I definitely had Sjorgren's and asked if I really wanted to go down the biopsy route becauseits so painful......I said yes, because I wanted to prove it to rheumatology and i felt this was the only way. So, I had the biopsy, and it's come back negative?? I was astounded. So now they're saying I don't have it. However, I'm also on biologic injections for severe psoriasis. I've read since that these can interfere with the biopsy results. I'm at my wits end, I feel like I'm going around in circles. The fatigue, dry eyes, dry mouth and below are killing me. I had to stop wearing contact lenses 9 years ago because they stuck to my eyeballs and I struggled to get them out.

My question is, has anyone else experienced this issue? Sorry for the long post.

Lisa

[dg70]

I am a negative bloods sjogrens patient. I was diagnosed on symptoms alone by a rheumatologist who is a sjogrens expert. My usb heated eye mask is my constant companion (20 mins twice a day) I never had a lip biopsy either. I had the schirmers test which proved dry eye. Review your symptoms, sjogrens foundation usa has a great website. If you can tick most of the boxes, find a sjogrens expert and have a private consultation. If you are in the UK then I think the London lupus centre covers sjogrens. I went to Dr price in Swindon who is an expert in this field and sees people from all over the country privately. Hydroxychloroquine has made a big difference to me. Pilocarpine was great for moisture production but I can no longer tolerate it. It's the heated eye mask that's made a massive difference, if you have one use it for at least 20 mins several times a day if you have to. My meibomium glands are so like butter instead of oil that they get blocked every day and cause pain when they block up. Sounds like you need medication. Also if it's sjogrens it's all the internal issues that need attention, lungs, kidney stones, our down below area. I hope you find a path that leads to diagnosis.

[Fibreartist in reply to dg70]

Hi, thank you for your reply. I live in Wales, but I was contemplating requesting an appointment with Dr Price. As you say, there are so many other internal issues, I don't want to fall through the net.

I did purchase one of those heated eye masks after the optician advised I get one but my daughter borrowed it and I still haven't had it back! I must remember to ask her for it!

Thanks, Lisa

[dg70 in reply to Fibreartist]

Make sure it's usb eye mask as it keeps the temperature constant and usually has a timer. The microwave ones loose their heat. You may have them but xylimelts are the best for dry mouth. Dry atmospheres and most of the night. They last hours and don't move about in your mouth. They are good for your saliva and teeth too. I live by them, carry them everywhere they're just a bit pricey but if they help me not loose more teeth I'm happy!

[dg70 in reply to dg70]

I'm lucky I live near Swindon and got her completely by chance. There is a fantastic eye clinic nearby there and they have a meibomium ipl eye laser. Had 3 treatments and my eyes have been so much less sore. Not sure there are many of these lasers in the country but they have people who travel from Yorkshire and Wales etc for it. They also do a full and comprehensive eye scan and ct which all costs money but well worth it. Dr guy Smith a consultant ophthalmologist runs it. Matrix eye clinic it's called in Wroughton. He works closely with Dr price.

[Fibreartist in reply to dg70]

I'll let my sister know about this eye specialist. She has RA and Sjogrens, bur her eyes are worse than mine. She also has blepharitis on top. Thanks, Lisa

[Fibreartist in reply to dg70]

Thank you, no, mine is a microwave mask. I didn't know you can get a USB version so thank you, I'll definitely look into this.

[dg70]

USB masks are infinitely better and only about £25. They switch off when the time is up too. They are not heavy and sit closer to the face too.

[welsh12 in reply to dg70]

Where do you buy them

[dg70]

Amazon - I have this one attached. the outer mask is washable which I find helpful.

Cost £15.99 on amazon