I have just been diagnosed with Sjogr... - The Australian Sj...

The Australian Sjögren's Syndrome Association

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I have just been diagnosed with Sjogren's and have an appointment with a Rheumatologist in May.

alihomes profile image
8 Replies

For years I have had all sorts of small issues and most of all is my dry mouth. I have spent thousands of dollars getting my teeth fixed, filled and then 2 years ago after suffering numerous abscesses and infections in the mouth, I had all my back teeth out leaving me with 12 front teeth. I have carried water bottles around with me for about 10 years, had the dry night cough and have just started with having itchy, grit like eyes at times. I also have a diagnosis of low thyroid and am always tired. I do a days work and can't wait to get home to bed in the afternoon for an hour or so to revive me.

This last month my hands and wrists have been very swollen and painful and Voltarin tabs have helped ease the inflammation. 3 months ago I was told by me GP that I have a fatty liver and have been trying to change my eating habits but keep falling back to old ways. Struggling with feeling a bit overwhelmed at the moment. I am waiting to see a Rheumatologist in May and have to travel over 400km there and back to see him as I live in country area.

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alihomes profile image
alihomes
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8 Replies
Psychodelia profile image
Psychodelia

Wow, sorry to hear this, I will leave it to someone more knowledgeable than me to answer you, I hadn't even heard of Sjorgren's syndrome till very recently, but wanted to say, I feel your pain! Especially with the dry mouth/teeth problems - NIGHTMARE! And the terrible lethargy/tiredness and dry, gritty eyes. Do you use lubricating eye drops? They most definitely help, as does 'cupping' your eyes in your palms with your eyes open, imagining you are looking at black velvet - a couple of minutes of this - especially if you have briskly rubbed your palms together first to warm them up is soothing. I have been helped by the advice of the wonderful people on this site and it won't be long before you will be too. Best of luck.

Tassa profile image
Tassa

As far as the mouth problems go you may be lacking in vitamin b as I was. I had terrible trouble with mouth ulcers and going onto vitamin b tablets helped a lot in fact It cured the problem. SS people have a low immune system and are lacking in vitamins and minerals. I would suggest going to a health shop and also your G.P. to discuss going onto the above. I have been taking them for many years now and have found it most beneficial. It is most important to keep your lips moist at all times with vaseline or a similar type of moisturizer as dry lips can be one cause of ulcers forming in the mouth. Think about taking omega 3 oils also to keep your immune system in better order. Natural remedies in my opinion have helped a lot, your system is so low it sounds as though it cannot cope. I would keep away from any foods that aggravate your mouth and dry it out such as hot spices, acidic drinks etc. Chewing helps to create saliva, lack of which is another reason for ulcers to form, are you able to chew gum or something similar? As for the eyes you need to keep using lubriicated eye drops as and when you need to. There are eye drops available without preservatives in them that can be used for several months at a time, these can be sourced from any Pharmacy shop. Hope this will help.

Traveller.

alihomes profile image
alihomes in reply to Tassa

Thanks for your helpful comments. I am probably very deficient in vitamins as I have not been eating a very balanced diet and am struggling to get onto all the healthier options at the moment. Thankfully I don't have much trouble with my eyes being dry but my mouth is always dry. I have started using some products but not sure if they are any help. I just sip lots of water. I will start back on my vitamin regime.

milkwoman profile image
milkwoman

I hope the rheumatologist does a thorough exam and also runs a FULL panel of blood tests to make sure you don't have any other autoimmune disorders (I have lupus and sjogrens). I have been on Plaquenil for the last 9 months. It helps with the joint and muscle pain.

I use the Biotene mouth rinse and the oral gel. I also use Systane preservative-free drops by day and Bausch & Lomb soothing pm eye gel at night.

I also supplement with Vit D, Vit B12 (methyl cobalamin), methyl folate, Vit C (acerola), biotin, biosil and evening primrose oil.

I'm also on levothyroxine and thyroid extract because I'm hypothyroid.

Good luck with your appt in May.

alihomes profile image
alihomes in reply to milkwoman

Thank you for your comment. I have had lots of blood tests done and probably more to come to try to work out what is happening to me. I am also hypothyroid and have been on thyroxine for about 5 years now. My appointment is soon so I will let you know how I get on.

scot53 profile image
scot53

I'm also on thyroxine for thyroid. It has helped. But my worst problem is swallowing - a nightmare and very often choke on food.

I use artificial tears for dry eyes which really help. I also take a multivitamin b. I suggest you take this after consulting your doc. Good luck.

scot53 profile image
scot53

PS. Forgot to add : have spent and am still spending a fortune on my teeth!

bambino4 profile image
bambino4

Well after 5years of extreme discomfort with my dry eyes and Blepharitis I have finally been diagnosed with Sjogrens. I Cant pretend this disease isnt a huge discomfort and daily chores are difficult!! I find working long hours impossible as my eyes burn and give me pain at all times. I use drops every hour or so and ointment for bedtime and can sleep for hours and hours as my eyes become so tired and for me being so dry they are best when closed. I am now taking Plaquenil for the past 2 and a half months, but my Rheumatologist explained that my eyes wont get better as they are too far gone by this time.....I have tried almost everything on the market including fish oil and Krill oil....I have been reading up on the E-Eye IPL treatment with an Opthamologist....can anyone give me any advise on this treatment?

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