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Autoimmune disease

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Sjogren

2 replies

DeeKitch · 03/09/2025 09:58

Hi lovely peeps

just wondering how everyone is managing and any stories

one that springs to mind is being young and dentist disbelieving that I brushed my teeth correctly

(dry mouth, plaque build up)

OP posts:
Mamathulu · 15/10/2025 15:55

hiya - I'm a sjogren's person. Dentist hasn't given me jip, but it's becoming quite a management system - Eye check-ups (hospital) every 6 months), rheumy annually, optician's yearly, dentist 6 monthly, eye drops 6x day, hydroxychloroquine 2x day, fatigue and energy management, using a power chair to try and limit exertion when out, but still be able to go out and do things. But - having a diagnosis after 40 years of being told I was just faking it, has been rather a relief.

My dad suddenly having to go into hospital meant that I suddenly had to do loads of research on YT and find supplements recommended by trained medical consultants that would actually work, in order to try and be able to visit him every day. It was helpful - sadly he died, but it was dementia, so not totally unexpected.

But as a result of that, I'm now on a major programme of supplements, so I'm taking 5 tablets in the morning, 3 at night, three supplements in a drink, and then painkillers and my normal hydroxychloroquine and blood pressure meds on top, but I think I'm better now and less flarey than I have been in some time.

MsMarble · 15/10/2025 16:21

Mamathulu · 15/10/2025 15:55

hiya - I'm a sjogren's person. Dentist hasn't given me jip, but it's becoming quite a management system - Eye check-ups (hospital) every 6 months), rheumy annually, optician's yearly, dentist 6 monthly, eye drops 6x day, hydroxychloroquine 2x day, fatigue and energy management, using a power chair to try and limit exertion when out, but still be able to go out and do things. But - having a diagnosis after 40 years of being told I was just faking it, has been rather a relief.

My dad suddenly having to go into hospital meant that I suddenly had to do loads of research on YT and find supplements recommended by trained medical consultants that would actually work, in order to try and be able to visit him every day. It was helpful - sadly he died, but it was dementia, so not totally unexpected.

But as a result of that, I'm now on a major programme of supplements, so I'm taking 5 tablets in the morning, 3 at night, three supplements in a drink, and then painkillers and my normal hydroxychloroquine and blood pressure meds on top, but I think I'm better now and less flarey than I have been in some time.

Can I be cheeky and ask what your schirmer test result was? I was diagnosed with the symptoms of sjorgren ( my eye test was 2 in each eye), but they didn’t diagnose me - just discharged me with no treatment, appointments etc. Just wondering what I maybe should be getting.

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