Anyone else with Sjögren's?

[Tippytappytoes]

Originally they thought I just had IBD related inflammatory arthritis. After suffering with pleurisy they conducted more tests and diagnosed Sjögren's. I don’t really present typically - which is always the case. I do occasionally have dry eyes and mouth. It’s currently controlled be methotrexate subcut once a week. So I was just after other people’s experiences and/or recommendations for eye drops etc to help ease the symptoms.

My consultant thinks I might have Sjögren's syndrome but the blood test came back negative.
The hospital would normal follow up with a lip biopsy, as a negative test does not rule out having it! But no lip bioposy atm (thank goodness) due to covid, plus whatever auto immune condition is triggering my neurological condition, wouldn't effect the treatment my consultant is giving me. So in one sense it doesn't really matter.

Sorry I can't be of any help.

Worrysaboutalot I hope you get a diagnosis soon. I know how much of a relief it can be just to have a name.

Hiya yeah sjogrens secondary to Scleroderma. Viscotears are the only eye drops worth having, they are like jelly and really seem to stick to your eyes rather than just rinsing off like other drops. You only get them on prescription but your GP or Rhuemy can give you them. I dont use the mouth stuff because its rancid! Lots of salt mouth rinses, barley water juice and difflam mouth wash is brilliant for the mouth sores you will get. Dont forget to moisturise your lips with a good moisturiser as they will get really sore too.

@Tippytappytoes

Worrysaboutalot I hope you get a diagnosis soon. I know how much of a relief it can be just to have a name.

My neurological condition is Dorsal Root Ganglionopathy trigged by an autoimmune condition as yet unknown but thought to be Sjögren's syndrome.

Yes knowing what is wrong does help. Though I might never know which underlying immune condition I have.

@Redannie118 Thanks for the tips. Good to know.

I was diagnosed with Sjögrens about 10 years ago but am very lucky in that I don't suffer too badly at all (just some occasional joint pain) and don't need to take any medication yet. It's nice to hear of other people with it as no one has ever heard of it when I mention it, including other medical professionals for example

I also have Sjogrens secondary to scleroderma. I use Viscotears but am also prescribed Optive eye drops, which I find really good.

For dry mouth, I can't tolerate the sprays as they make me gag! I use sugar-free sweets (xylitol ones) and the dental hospital also gave me some pastilles called Xylimelts, which help a bit. Other than that, loads of water helps.

Hi

I have recently had it diagnosed secondary to JIA. Struggling with a number of things I’m putting down to it, but also a lot of facial neurological pain I’m not sure is linked or due to something else.. 🤷🏻‍♀️

The hylo-tear eye drop from GP has worked for me and also finding good sunscreens help. And limiting screens!

I haven’t been able to talk to any other sufferers, so I’m glad I posted! Thanks for all the recommendations! I have prescription gel eye drops to use at night, but I don’t find them too comfortable, I think because they make me temporary blurry blind and I panic. I tend to use Hyabak 0.15% during the day. It’s only my eyes that are bad, my mouth is only usually dry at night but I always go to bed with some water. And I carry boiled sweets just in case I do get an odd day dry mouth.

I’m not allowed out in direct sun because of the methotrexate making it uncomfortable, can that a Sjögrens thing too? I do get unexplained face pain, like a really bad cramp. My dentist doesn’t see a cause and he referred me for scans but there was nothing there!

Yes, I find the gel drops difficult too. I’ve found wearing an eyemask in bed comforting, but have experimented with a few and found one with a bit of weight is most comfortable.

Yea the sun thing is strange but very difficult to live with. It seems to flare up my Sjogrens symptoms.
Interesting you say about your face too. Yes it’s like a numb/ throb- hard to explain! I’ve found rheumatology quite dismissive about it but would like to know what’s going on and if it’s linked. My GP has referred me to neurology. A salivary gland ultrasound was done which showed some changes but v little explanation given to link.

I have Sjogren's. I've been on hydroxychloroquine for a couple of years, it's really helped with my joint pain. I agree about viscotears. I'm having a lot of neurological symptoms, tingling and feelings of water on me. I've a rash on my neck, shoulders and back too that I can't shift. Seeing my neurologist again in a few weeks. Sounds like a few if you suffer neuro symptoms too though, that's reassuring.

@sunnyskies3

Yes, I find the gel drops difficult too. I’ve found wearing an eyemask in bed comforting, but have experimented with a few and found one with a bit of weight is most comfortable.

Yea the sun thing is strange but very difficult to live with. It seems to flare up my Sjogrens symptoms.
Interesting you say about your face too. Yes it’s like a numb/ throb- hard to explain! I’ve found rheumatology quite dismissive about it but would like to know what’s going on and if it’s linked. My GP has referred me to neurology. A salivary gland ultrasound was done which showed some changes but v little explanation given to link.

I think I’ll definitely try an eye mask. I hadn’t though of that to be honest, so thank you 🙂

I get frustrated with rheumatology where I am. I rarely see the same one twice (although I’ve since managed to get a very good specialist interested so he keeps informed of what is going on and directs treatment/tests etc). When I was first diagnosed with “inflammatory arthritis” I was invited to a information day, which was mostly geared towards rheumatoid arthritis. But after my sjögren’s diagnosis I’ve had no information about it, they didn’t even explain it. I googled it in the car after the appointment!

Based on my symptoms I was fairly sure I had it from a few years back. Dry eyes, dry mouth, swelling and pain in the parotid glands at the side of my face, plus sensitivity to the sun and productive cough first thing in the morning were the main symptoms. But equally I did wonder if it was all just age related, peri menopause etc.

However last year I went to give blood and couldn't as my haemoglobin was too low so was referred to GP for blood tests. First lot were concerning, second more investigative lot showed the markers for Sjogrens. Luckily I don't currently have any joint pain and get by with over the counter eye drops, chewing sugar free gum etc. I sometimes get sore gums and find Gengigel mouthwash brilliant for sorting that out. The parotid glands flare up every month or so but I mainly just put up with them, though find massaging the gland helps a little. I do worry about how progressive the disease is and am constantly wondering if I'll suddenly get worse. There is a facebook group called Living with Sjogren's Syndrome that I joined and some of the members on there are amazing with the way they cope with very severe symptoms.