Sjogrens diagnosis - scared. What to expect?

@zippyswife

i took them for about 3 months and didn’t notice any difference whatsoever. Started HRT after that and that did help with some issues, but not the nasal dryness (which is what I wanted sorting!).

@IBlameTheDog whats the verdict on the sea buckthorn oil- would you recommend them? I have seen it come up a good few times on MN

Venus Williams has also talked about her experiences with Sjogrens in depth on her YouTube channel.

Sorry I forgot the eye drops 🫣

I have this secondary to psoriatic arthritis.

It's not true that it isn't disabling, it absolutely CAN be but thankfully for most it is mild/moderate.

These eye drops I've attached in a photo are great, by far the very best I've found. Not cheap though at £12-16 a bottle. If it's incredibly bad then the gold eye drops by the same brand are really good for night time and last longer but are more expensive. If these are not affordable then hypromelose gel is around £3-4 a tube.

Water. She needs water on hand at all times to prevent dry mouth. Xylitol chewing gum is good. You can also get pastilles that attach inside the roof of your mouth to encourage saliva production. But I think they are gross tbh. Lack of saliva is horrible, my tongue has split and bled, my speech is impaired my vocal cords affected. My gums have recessed and cavities increased even though I've used prescription high fluoride tooth paste etc. Oral hygiene needs to be spot on.

Also vaginal moisturiser/lubricant or the hormonal cream to increase moisture as you can get terrible dryness and the change in ph can trigger a Domino effect of thrush/bv/thrush. Some days I was scared to walk to quickly in case it started a fire in my pants. Just awful. It's a horrible horrible illness.

The Sjogren's Support group on Facebook is great for sharing hints, tips and worries.
There is also the British Sjogrens Syndrome Association which is full of support.
It affects different people different ways. It can be scary suddenly being diagnosed with something few people have heard of.
Some people get away with a few symptoms just being a bit of a nuisance. For others it is far more severe and life changing.
Hopefully she will get a knowledgable rheumatologist and will be helped to manage any symptoms that cause her issues.

I've been diagnosed with it for over twenty years. It's been mainly the dry mouth that's impacted my life the most (always carry water) and it's only the last couple of years my eyes are drier and more gritty.

Unfortunately once you get one auto immune condition you end up collecting others so whilst she mustn't be frightened of that, she must also be aware that not everything should be blamed on sjorgens in the future. It is thought my lupus (diagnosed 5 years) and fibro (diagnosed 30 years) is causing my pain, fatigue and brain fog, not that.

Tell her she will be able to look after her children. I managed with sjorgens and fibro, you cope

Like others have said - in the most severe cases, it can cause problems like joint pain and vision problems. But the vast majority of people don't have those problems.

Your friend has obviously looked up the condition and is catastrophising. I do get why she's worrying, because when you look up any medical condition, you immediately see things like 'Some people with this condition suffer from (a whole range of awful symptoms)' but you don't get any indication of what 'some people' actually means. Your friend needs to understand that 'some people' in this instances means a very tiny number and that she's highly unlikely to have symptoms anything like as severe as that.

Venus Williams has this diagnosis, and continued to play top class professional tennis for many years after it was diagnosed. She in no way "has a disability".

You don’t need to play disability or illness top trumps. It is absolutely normal to have empathy for someone with a less serious condition. They are entitled to their feelings without being dismissed.

Tell your friend to try Sea Bucktthorn oil or capsules. They're supposed to help lubricate the body's mucous membranes. It's pricey but supposedly very good. I'm only a few days in so can't say yet!

This post isn’t about you or your diseases though is it? And for some with sjoren’s it can be absolutely life limiting.

I have it along with other things. I'm not exactly a high flyer and currently working FT.

I ache a lot which isn't great but it's the dry mouth I find equally, if not more difficult to deal with.

Brain fog - I was diagnosed at around the same time as the menopause and it was hard to tell what caused what.

Life goes on though.

I have Sjogren’s amongst some other conditions. It’s unpleasant and tiresome but it doesn’t stop me from doing what I want. I have dry eyes, dry mouth, joint pain, gastro issues, brain fog and fatigue.

Without a doubt it had an impact on her life and career but, as positive story, Venus Williams still won a Grand Slam singles, two Grand Slam doubles and an Olympic gold and silver after she was diagnosed with Sjogren’s. She says she was aware of symptoms of it for seven years before diagnosis but still played at the highest level and was very successful during this time.

Hopefully your friend won’t find things as difficult as she is fearing.

The majority of people with Sjogrens just find the condition annoying, but it doesn't stop them from living their life. For most it just makes your eyes and mouth dry. Unfortunately the diseases I have do stop me from living life to the full which isn't great as I'm only in my 20s with a toddler.

@Lupina12 https://www.nhs.uk/conditions/sjogrens-syndrome/

There's some terrible misinformation on here.

I have a number of autoimmune conditions,one is Sjogrens. Sjogrens absolutely can go for every part of you and there is a group of us who have some horrific problems, including neurological. I do however feel that this group of us are in the minority of Sjogrens sufferers.

The problem with Sjogrens is that there just aren't many effective treatment options. Say unlike Inflammatory Bowel Disease where there are a variety of immune modulating treatments.

I think it's best your friend doesn't go looking too much on the internet. Maybe she has seen the actual truth online regarding how vicious this condition can be and she worries she will be in that category too. I really believe based on every group I'm on that it's a smaller percentage who are significantly impaired like myself.

I can’t link to it but there’s also a group on Facebook called “sjogrens support U.K.” which is very good.

I can’t eat anything hard or crusty at all- no crisps, no sharp chips or anything like that. You do sort of get used to it though. I don’t find any of the mouth sprays etc useful. I’m under an oral specialist at the hospital.

I don’t understand why she’s so scared - I’ve got lots and lots of complex autoimmune issues as well as Sjögren’s and yes it’s annoying (I have it quite severely; dry eyes, invasive Candida because of the dry mouth and dry vagina etc etc) but it is probably the thing that bothers me the least overall. I also have lupus which often overlaps with Sjögren’s and that gives me far more trouble. I think she needs to step away from google and deal with each day as it comes. I was diagnosed at 37 and I’m now 43. It affects people differently in terms of severity.

I have this. Oralieve is good for keeping mouth moist and xlyomelts (sp?) are great for stimulating saliva flow. They’re little minty things that you tuck in cheek and they stick to gums, sweetened with xylitol so not harmful to teeth, I understand. they last for hours so keep mouth moist. Only found them on Amazon.

hydrocare eye drops and hydrocare eye gel at night keeps dry eye at bay, available from boots.

after shower, vitamin e oil on finger…. Sorts vaginal dryness. H& Barrett.

Generally eat healthily, strict limit on upfs, empty calories, etc, try to get good sleep and regular walks.

What kind of a comment is this?

“how pathetic your friend is, all my diseases are way worse!!!”

empathy I think it’s called

My mum has had it since her 40s. Now she is 88, so about 40 years. She uses eye drops, artificial saliva etc.

She takes it in her stride. She has had gastro stuff but the worse thing for her has been the deterioration in her teeth in the last few years. She was always rather vain.

My mum is fully mobile, she has all her marbles and was driving until a few months ago.

When she first had it she joined a society for sufferers which was full of doom and gloom and competitive suffering. Just tell your friend to get on with life, just learn to manage the symptoms.

I have Sjogrens and I am affected by the joint pain and fatigue. I do work full time though.
I see my dentist every 4 months to maintain my teeth and use a fluoride toothpaste in the evenings and floss every night.

I've had my tear ducts cauterised to preserve what little tear production I do have and see the eye specialist once a year.

It's easily manageable and doesn't stop me living my life.

It was diagnosed during a routine eye test and I was sent to the hospital for a further look. I'm in my early sixties, had it about ten years, I guess. I also have rheumatoid arthritis and they often go together.