Sjogrens

Does this group include Sjogrens ?

27 Replies

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  • Some people in this group have Sjogrens.

  • Sure does, welcome!

  • Welcome.

    I believe i have it because my optician and dentist both say i have, but my Rheumatology consultant says its secondary as my RA is so advanced and if i need eyedrops or whatever my gp can deal with it! Charming i thought.

    Blessings

  • Hi Leonwp - I had the same issue - My rheumatologist wasn't really interested in the Sjogrens or doing anything with it even though it is a really serious disease too

  • I certainly dont agree with it but you are not the first to say they had the same experience, im going to read up a bit and see how different the core treatment plans are for the two as seperate issues.

    But interestingly i have thought for a while how many RA sufferers have Fibromyalgia as well?

  • Yeah - What's weird is that many people have FM and maybe another condition like Sjogrens, but no diagnosis of RA. It's so tangled up - Lupus is in there - ankylosing spondylitis, psoriasis... Scary if you really think about it...

  • Very true, we are pobably all disease mongrels in some way when you include all side effects.

  • Everything I've read said the only thing for Sjogrens is eye drops, nasal mist, etc. Whatever's dry can be lubed up but you can only treat the symptoms. My rheumy NEVER mentions my Sjogrens. The only one who seems to care at all is my Optometrist. I feel that if I focus on it all as being AUTOIMMUNITY, then that should help, but the drugs are all for RA.

  • Exactly the same for me only retinopathy and dentist even interested.

  • I also have RA and dry eye . My optician recommends Thealoz Duo eye drops and, having tried both they are indeed better than the best that NHS GP can prescribe. Also use of a heat mask for eyes was recommended and helps.

  • How can I find posts about Sjogrens please ? Thank you so much 😋

  • Just go to the search bar and type it in. It will bring up whatever is there...

  • Omg I don't c a search bar

  • Hi Funnygirl - At the top there is a bar that has your name, "My Communities", the number of notifications you have, Help and the grey bar that says "Search NRAS"

    I tried to put a pic in here, but couldn't get it to take...

  • Hi I have sjorgrens was diagnosed 3 years ago and confirmed by second opinion again this last September. Not been able to work since 2014 .

    I belong to this group , fibromyalgia and lupus group , it's hit and miss as it's really quite rare to get it bad I am waiting for power wheelchair at the moment .

    Sorry not very well at moment

    Gentle hugs

    Chris x

  • Hey Shadows-walker, I am so sorry for all of that. All of those are hard, and painful diseases. Sometimes I wonder if there isn't just one disease that we all have, and what we call a specific name is just a subset of something we haven't discovered or named. Gentle hugs to you too!

  • Yes I agree , I am in wars a bit at moment as had a bleed at new year so now we're checking out womb cancer as well ,so it doesn't rain but it pours ,

    Hugs again

    Chris xx

  • So sorry Chris... I wish I had something more to offer...

  • I am so scared and having to put on a brave face as I don't want my kids to go through more, they have had so much in the last 10 years and the last 5 me being ill it's just not fair so many people here go through more than they should and others are unscathed. My moan of the day over ! It's strange I usually go on the fibro site and mess about post jokes make people laugh but I can't bring myself to post on there have been avoiding the forum like plague ! Rediculas dawned on me just know I am treating them like my children cracking jokes etc

    Oh well we all cope in different ways.

    Gentle hugs

    Chris x

  • I agree - My coping mechanism is usually to go to ground - I get really quite and don't get out or do too much..

  • I am upstairs in my room hiding away with my beagle .

    Have a battle tomorrow with with social services so have to rest anyway .

    Going to try and nap for an hour as tired

    Thank you for chatting to me it has helped,

    Chris xx

  • Hey Chris - Sleep well if you can especially since you have your friend with you. My cat will get on the bed next to me and sometimes purr me awake she is so loud.. ha ha

    I was very lucky. I could actually retire before I needed disability. I could have asked for disability, but didn't know that so no help until I retired early.

    I don't envy your appointment with SS tomorrow, but fingers crossed that it will go all in your favor.

  • My dr insisted I stopped work at the age of 52 . I am 55 next week . So not sure what's next .

    Murphys snores and snuggles and smells of popcorn! 😊😊

  • I have RA and sjogrens. Mostly affects my eyes and mouth/throat. My eye consultant is great and has been very proactive about sorting out the inflammation in my cornea which was causing me a lot of difficulties (I am using immunosuppressive eye drops called Ikervis for this). On top of the eye inflammation and severe dry eye I have a dry mouth and swallowing is often a bit tricky! The one registrar in rheumatology I once mentioned sjogrens to after my diagnosis obviously didn't know much about it and suggested I drank more water... I just ignored that and speak to my GP. GP has been great in managing and putting on repeat prescriptions all the eye drop the hospital has given me.

  • Yeah - haha -I've had that suggestion made before... Like water is the only answer. Let's see - to lose weight, just quit eating, to get rid of your RA, just change your diet and exercise more.... It can go on forever...

  • Thing is, having sjogrens on top of RA you never quite know what it is that is causing the pain or stiffness or fatigue that is ongoing despite being on Humira and leflumonide.

  • When I was first assessed at clinic for RA, my consultant asked me whether my eyes were dry and if I had a dry mouth. He said "can you eat a dry cracker without choking?"

    I then had the Schirmers test (determines whether the eye produces enough tears to keep it moist. This test is used when a person experiences very dry eyes or excessive watering of the eyes. It poses no risk to the subject. A negative (more than 10 mm of moisture on the filter paper in 5 minutes) test result is normal.)

    My left eye is dry, the right is fine. Ain't we a weird bunch!

    I was given non steroid drops which I need to use in the evening when watching TV. Other than that my eye is fine.

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