LUPUS UK
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Sjogrens/lupus

Hi everyone, following from previous post around 6 months ago, the doctor I thought was going to be helpful actually wasn’t :(( I explained about how I’m dehydrated all the time regardless of the amount of fluids I take & she said she would test for Sjogrens finally!!!!!

I suffer with nausea & could barely eat without feeling sick all the time.

She basically printed out some ‘good foods’ sheets 🙄 my diet is already extremely healthy & forgot to put a form through for my bloods (Sjogrens ) I phoned the surgery to speak to her but they said they would leave her a message to remind her to do the test, never heard back.... anyway, fast forward a few months after still suffering sickness I saw my previous doctor... she’s put me in for a scan for my stomach & thinks ibs (that’s a no from me)

I don’t get stomach cramps/constipated... no ibs symptoms. Also doing bloods for my mouth & ‘nuclear’ stuff.. not sure.

Had appointment wed & im positive for Ana so she believes Sjogrens & possibly lupus/lymes?????

I have almost all symptoms of lupus and recently developed inflammation/rash on my face... I hate this:( usual fatigue, aches & pains (always put this down to exercise) brain fog, I read ‘leaky gut’ & nausea which have suffered for over a year with this. She’s emailed Rheumatoid to refer me or see if she needs more bloods from me. I have hypo/hashis.

I just wanted to know is there a definite yes or No for lupus and people’s symptoms & will I be medicated & for it & Sjordjens as well??? Any info would be fab on these please xxxx

Thankyou xx

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Hi Lisas_tired,

Sjögren’s syndrome:

According to The Lupus Encyclopedia, Sjögren’s syndrome “affects the lacrimal glands, which secretes tears, causing dry eyes, and the salivary glands, which secrete saliva, causing a dry mouth”. The encyclopedia states that one key symptom of dry mouth in Sjögren’s syndrome is ‘tongue sticking to the roof of the mouth’.

The NHS Choices’ website provides information on the diagnosis and treatment of Sjögren’s syndrome: nhs.uk/conditions/sjogrens-...

For more information you can visit the BSSA (British Sjögren’s Syndrome Association) website here: bssa.uk.net/

Lupus:

There are specific tests and criteria that need to be met in order to make a diagnosis of lupus. For more information on how a diagnosis of lupus is made, please click here: lupusuk.org.uk/getting-diag...

To find out what symptoms are associated with lupus, click here: lupusuk.org.uk/the-symptoms/

It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely that two people will share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

Lupus can be managed with treatment and responds to medication in a majority of cases.

Below I have included some information links which I hope you will find useful:

Lupus & medication: lupusuk.org.uk/wp-content/u...

Brain fog: lupusuk.org.uk/coping-with-...

Fatigue: lupusuk.org.uk/managing-fat...

Pain management: lupusuk.org.uk/pain-managem...

Please keep us updated, wishing you all the best.

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Thankyou sooooo much!! This is a great help, really appreciate it xx

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I have Lupus and Sjogrens. Whilst testing for one they found the other as well. A lip biopsy would confirm your Sjogrens. Keep pushing for appointments you cannot rely on GPs for auto immune illness - a lot tend to be ignorant or confused and put it down to other things. Hydroxychloroquine soon helped me improve. There are lots of simple things you can take to relieve symptoms - try ginger in some form, tea or grated into warm water. It really settles nausea and won’t affect any meds. Keep pushing for a diagnosis - it can take ages. Look at thus websites topics for help and where the Centres of Excellence are and get referred to one of these Hospitals. Good luck

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Thankyou for the response, much appreciated, it’s taken me over 3 years to test regarding my mouth, they kept mentioning diabetes!! Cannot believe a doctor finally tested for antinuclear & said it’s sounds like Sjogrens, I am so used to constantly having a dry mouth but it doesn’t affect my eyes at all..... I take fresh ginger with juices & it really does help. Glad to see there is actually a relief with medication for my mouth (hopefully) and I’ve actually got a hospital appointment regarding my ulcers at the end of the month so my doc told me to mention it to them as well xxx

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Hi Lisa - I read about Xylimelts in the BSSA magazine months ago. I put one on my gums as they suggested and they work really well keeping the mouth moist and not harmful to teeth. I use Duraphat 5000 toothpaste - tell your dentist. Have a look on the website mouthukcers.co.uk for Xylimelts and other helpful stuff. Website BSSA (British Sjogrens charity) UK. BIOTENE gel helps mouth too and you need to drink a lot of water or anything not too sugary. Hydration helps a lot. I have cut out so much sugar as they tried to tell me diabetes too! Less sugar really helps with energy too. Hope this helps. Cas x

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Fab, that sounds great, I was wondering how they actually treated the dryness!!! I’m due dentist soon as well & dental hospital so will deffo mention this...

I have a really healthy diet, I train/compete body building so I drink so many litres a day, my sugar intake is practically non existent :)))) Thankyou again xxxx take care xx

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