The Australian Sjögren's Syndrome Association

U.k member

hi I hope you all don't mind me joining you. I live in the uk and I am hoping to get some tips from you all about managing symptoms of sjogrens. I was diagnosed with snog rents last September, after many years of problems with my mouth, swallowing, and tiredness. To be honest it was a relief at first to know what was wrong with me, I was beginning to think I was ahypochondriac!. I have been started on hydroxy and am waiting for it to have some affect on my symptoms. FIngers crossed.

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Hope you start feeling better soon,, plaquenil did make a difference to my symptoms so good luck 😃

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Hi, plaqunil helped me, but took a few weeks. Welcome-Im from the uk as well.

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Thank you. It's nice to know we are not alone!

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Hello I was on hydroxy (or plaquenil) for about a year, it does help but you need to have an eye check maybe twice a year as it can affect your eyes speak to your doctor about this. It may pay to go onto a vitamin and mineral supplement as we SS people are lacking in that quarter due to an immune problem. it does help.

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What vitamins do you take, if its ok to ask? I am a bit anxious about adding more tablets to what l am taking already!! I would like to boost my immune system also thinking about vitamin D🌻

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Hi UK member, have you been on our website sjogrens.org.au. there is a series of video's on there with tips for daily living and things that have helped me example Biotene mouth moisturising gel, swallowing, 8 drops of Glyserine in a glass of water and a spoon full of organic coconut oil, fatique, have you had your thyroid checked, your vitamin B12, iron, Albumon, and cortisol not having enough of these will make you tired, hope this helps

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