Sjogren Anyone 😡

[SassyRA]

My rheumatologist informed me that I have now tested positive for Sjogren. She said it may possibly just be due to the RA & I will have another blood test in 3 weeks. Anyone else get this when diagnosed with the rheumatoid?

[Nettac]

Sorry to hear that Sassy.

Is it a blood test? What symptoms did you have?

[SassyRA in reply to Nettac]

The rheumatologist tested for it the last time they took blood. I read some symptoms are dry eyes, dry mouth, difficulty chewing/swallowing, sore tongue & dry burning throat which I have had.

[sylvi]

I have RA/Fibro and Sjorgens and the last two have come after RA.xxxx

[helixhelix]

You can have primary and secondary Sjorgens. Many people with RA have secondary Sjorgen's which can range from being a minor irritant (literally!) to a big, big problem. I have secondary Sjorgen's which is quite minor - so just endless eye drops and mouth washing, and big sunglasses.

Primary means that it's the main disease and can be more difficult. Did they doctor say which you have?

[SassyRA in reply to helixhelix]

No she didn’t say if it was primary or secondary

[juneann]

Hi, I was diagnosed with RA in 2004 aged 42 and Seogrens a couple of years later, although I now recognise the symptoms of SS started four years before the RA. I have always treated medication with, "If I can get away without it", with auto immune disease you cannot think like that. Even when you don't feel the need for eye drops use what has been prescribed for continued eye health, the only ones to be careful of are steroid eye drops. There is very little treatment for SS but you learn to adjust. I had an eight year struggle with chronic dry mouth and lots of sprays, pastilles etc. a great relief when available is ice cubes - fantastic.

X

[enthusiatjc]

I have sjogrens because of RA (the secondary kind), but it is not severe. I have to constantly use eye drops, and I chew a lot of gum to avoid my mouth from going completely dry. It has become another adaptation to my lifestyle, which is annoying, but what can you do? I also take Hydroxychloroquine (Plaquenil) which affects eyes as well, so my eyes are very light sensitive. I got new glasses which have a very light tinted layer which helps me when I'm using the laptop and phone.

Is yours severe, or manageable for now?

[Kai--]

.

Found these 'Sjögren's videos' helpful, SassyRA: google.com/search?as_q=Sjog...

In particular, Linda Charles' experience in 'Mystery Diagnosis (Sjögren's Syndrome): The Woman Who Couldn't Cry': m.youtube.com/watch?v=5bahu...(Not working as expected?)

.

.

And, was surprised (shocked) to learn about tennis player, Venus Williams (at the time). And, delighted to learn how she managed & continued to play 🏸 🎾: 'Venus Williams & Her Sjögren's Syndrome Diagnosis . . . ': m.youtube.com/watch?v=YYJ_S...(Not working as expected?)

.

.

Lot's of hope, SassyRA. ☺️ 🤗

You're in good company. 🙏 🍀 🌺 🌞

.

[SassyRA in reply to Kai--]

Thank You

[Kai-- in reply to SassyRA]

.

😌 🙏 👍

.

[Pands]

I have secondary Sjogrens and it affects my eyes (badly), ears, nose, mouth and skin surface (not so severe). I have an immunosuppressant eye drop called Ikervis to stop the inflammation in my eyes which has been really successful. My ophthalmologist has been great, rheumatologist not so bothered. Fortunately my GP has been willing to prescribe the eye drops that the ophthalmologist has specified and they have pretty much saved my eyes.

[Martina93]

Hi,

I’ve started the Ikervis treatment and I’m wondering how long it’ll take to see a difference? I’m also getting really hot cheeks right near the tear canal which is worrying.... not sure if it’s a side effect. I’ve got severe dry eye disease... weirdly the drops don’t sting putting them in which is weird. But my eyes are constantly red and small.

I’m running out of options and this has been on going for a 18 months now. So soul destroying.

Sam