Dry eye, mouth, skin. Sjrogens Syndrome

[Lucyand]

Im new here but I am also diagnosed with Sjorgens Syndrome.

I have dry skin, chronic dry eye and nasal passages - and most other cavities in the body.... unfortunately.

I have had a good result with Refresh Gel Drops ( or any Carmelosse Sodium 10mg per 1ml) for the chronic dry eye throughout the day, and the Polyvisc Night Ointment for night times.

I use Vaseline Intensive Care Aloe Vera Lotion ( $11.95 at Big W for 1.5 litres) on my whole body, after showering . I smear the whole body with this and it really helps.. moisturise the skin. I was using Sorbelene Lotion before this but have a better result with the Vaseline Aloe Vera one.

I am normally up and down all night with the dry mouth, sometimes waking up with mouth open and almost cemented open due to dryness.

However since Friday last week I have had a good result with a nasal spray ( relatively new to the market in Oz) which were sold to me by my dentist to naturally open up the nasal passages which were very dry and almost closed in my scan results.

The scan was performed by the dentist and has saved me going to get a sleep apnea overnight test - yeah..............

The nasal spray is called XCLEAR with XYLITOL and I am amazed at how much better sleep I have had since using them 3 nights ago.

Anyway hope it helps someone out there.

Bubbles22

[wsmith]

Thanks Bubbles22, great to know about this and will write that one down. I've lately been using Sukin moisturiser, lime and coconut (chemist warehouse) which I find fabulous. I can also recommend the Moisture Restoring Night Cream in the range for face which has completely sorted my dry lips which I've had trouble with for years. Good luck and hope you continue to sleep well 😊

[jaki1963]

I have the same issues. But use coconut oil in the shower and mix with lotion from wholefoods that has no sulfates. I also take cod liver oil tablets before bed that also helps with skin and eyes. Good info thanks for shareing.

[Hidden]

Thanks for the information Bubbles. And Welcome to the board. I also take Pilocarpine for the eyes, nose and mouth. It's pretty effective...

[Bron7]

Hi Lucyand

Have had Sjogrens and RA diagnosis for about two years now - this is my first post. I read about xylimelts on a post and order them from Amazon. They are great for assisting with sleep and restoring moisture. Well worth a try! I also order moisturising creams and nasal spray from a compounding chemist in Hamilton, NSW - they do mail orders -no nasty additives etc as I seem to get a rash with some creams now. Interesting to hear jacki1's comments on cod liver oil.

[honeybug]

Hi Lucyand

I was diagnosed with Sjogrens 12 years ago. My septum has been attacked to the point the tissue is extremely thin. I fear it will erode away leaving a hole. My ENT prescribed Bactoban cream 2% and said I had to use it lifelong. It really makes a difference in the moisture and helps my sinuses most days ( not as much if I am exposed to heat from the furnace). My primary doctor doesn’t want me on the cream long term due the antibiotic in it but I am allergic to all things petroleum so I cannot use that instead. Before the cream my nostrils would bleed and then crust over blocking my passages. I’m at the point in my life where I want quality of life even if it shortens it. I use Biotene spray for my throat and esphogus, also the oral gel for my mouth just before I go to sleep. This has worked great so far. Oh, I forgot to mention that I also take Evoxac twice daily to produce moisture in my mucous membranes, this makes such a difference. When I have to go in for surgery I can’t take it and I really suffer without it. In the Winter months in Michigan U S A I also use a humidifier with distilled water to humidify the house. This makes breathing a lot easier due to less coughing and the moisture. I have recently tried Flonase sensimist. This product really works it stops post nasal drip/flood and the related coughing to expell the gunk it makes in my lungs. I have countless allergies and this nasal mist is the best I ‘ve tried so far. I am so sorry that you are suffering. I wish there were standard symptoms for all of us and treatment would be easy. Since the symptoms are often as unique as each individual it makes it so hard and often depressing when no relief is found. I am so greatful that websites like this one exist so we can help each other. I can remember when I told a previous allergist about my fibromyalgia he told me it didn’t exist and (implied) I was crazy. I added him to my ever growing list of deleted doctors. I hope this helpful. I hope and pray that you find answers and relief my Sjogrens friend. 😋🌺

[Lucyand in reply to honeybug]

Thanks for your information it really helps. We all need to support each other. Stay safe.

[honeybug]

You’re welcome. Best wishes & God bless. 🌸