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Anyone have anything at all positive to say about after they got diagnosed with Sjögren’s syndrome ?

14 replies

CamdenCake · 23/02/2023 09:48

Just all I can read about it so far is totally and utterly depressing and scary

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Wolfiefan · 23/02/2023 10:07

I’ve been diagnosed with fibro but wonder if it’s actually this. Painful dry eyes. Awful
skin rash esp on face and esp after being in sun. But also the pain you expect from fibro. Just reluctant to go back to GP.

CamdenCake · 23/02/2023 10:14

Why’s re you reluctant to go back to the gp ?
do you have dry mouth ?

are you under a rhematolagist ?

OP posts:
Wolfiefan · 23/02/2023 10:39

Mainly because once you are diagnosed with fibro they say everything is that! I’m not under rheumatology. They don’t deal with fibro. Some dry mouth but nowhere near as bad as the eyes.

CamdenCake · 23/02/2023 11:43

Really ? I guess that does happen
have you seen an optician at all ?

OP posts:
CamdenCake · 23/02/2023 11:57

Or have your tired any eye drops
the best ones I’ve tried so far have been hycosan extra and what was recommended to me on here systene complete preservative Free

OP posts:
Wolfiefan · 23/02/2023 12:30

My optician just said to use eye drops. TBH until he said anything I thought my eyes were a normal level of dry! Hoping this bumps this for you.

CamdenCake · 23/02/2023 13:29

So have you found the eye drops made it worse ?
or have your eyes just got worse since the optician told you
just wondering how you thought they were normal but now they are very painful

OP posts:
CamdenCake · 23/02/2023 13:29

And thanks for the bump wolfie

OP posts:
Wolfiefan · 23/02/2023 14:38

I’ve been using eye drops but they just seem to be getting drier and drier. Or maybe I’m aware of how they feel better once I’ve put the drops in (for a moment at least!) so I am now realising it’s not normal. If that makes any sense at all?!

Pixiedust1234 · 23/02/2023 14:44

Wolfiefan · 23/02/2023 10:07

I’ve been diagnosed with fibro but wonder if it’s actually this. Painful dry eyes. Awful
skin rash esp on face and esp after being in sun. But also the pain you expect from fibro. Just reluctant to go back to GP.

Fibro and lupus present similar symptoms but lupus also has skin rashes and light sensitivity. Lupus can sometimes harm your organs without medication so its vital you get a rheumatologist appointment.

OP, I have been told maybe I have this too but I've kind of buried my head as my eyes aren't that dry (yet) and I'm finding the lupus symptoms more problematic atm.

Wolfiefan · 23/02/2023 17:48

I had a skin biopsy that I was told ruled out lupus (by dermatology)

Pixiedust1234 · 24/02/2023 00:52

@Wolfiefan that's good! Thats how they confirmed mine.

((Hopefully this bumps it up for OP))

RelentlessForwardProgress · 24/02/2023 01:14

2 of my family have Sjogrens. I have Hughes, which is a related condition, so I suspect I will get Sjogrens when I'm a bit older.

Both of them have had it for a while now, and after a bumpy start, they can both manage their symptoms without much real issue now. The key seems to be to have a good Rheumatologist who sees you regularly and who can suggest different things.

To relive the dry mouth issue, they both use Salivix pastilles which help relieve the dryness and also have fluoride in them, (the lack of saliva means tooth decay is more likely, so they also have to see the hygeinist every 3 months too).

For the dry eyes, There are different eye drops, some are much more effective than others. The gp practice seem to make it a bit of a mission to take them off the good ones and put them back on the cheap ones, the Rheumatology consultant has had to intervene several times to get the more expensive one reinstated. I think Cationorm are the ones they find the best.

One of my family has extreme photosensitivity as a symptom, so wears sunglasses almost all the time outside, even on dull days. And for some reason finds sitting in the back seat bearable but can't sit in the front in a car due to the way the light comes through the windscreen. The other family member doesn't have this with Sjogrens at all.

Non-Hodgkin lymphoma is more prevalent with Sjorgens, so a yearly Rheumatology checkup should check the lymph nodes in your neck. I know you wanted good news, but its important to keep an eye on this.

CamdenCake · 24/02/2023 22:15

thansk for the Cationorm recommendation
I think I can just buy them
I’d not heard of them so will try

thanks for everyone trying to help me
it’s really appreciated

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