Hi, I'm new here.

Hi, I'm new here.

Hi All,

I have not as yet been dignosed with Sjogrens, but I feel that I have it, and will be discussing it with my Rheumy next visit in May.

I was diagnosed with SLE Lupus in 2012, with Autoimmune Hepatitis, and my medication is to try and treat both, concentrating on keeping my liver from further damage. I am seventy four years old, and live with my male partner, who is also my carer.

I have noticed my dryness of mouth and voice hoarseness becoming worse in the last few weeks, also my vision..I am constantly swallowing to try and relieve my dry mouth, and keep a bottle of water with me at all times now...my skin is very dry also.

Thank you for allowing me to join this site..I have felt so alone with these horrible deseases.

Cheers Brenda....the photo is of me and my d.i.l Miwa and grand daughter Ayumi...she is now 3 years old.

5 Replies

oldestnewest
  • Hi Brenda - What a cute picture and sweet baby.. (and DIL too!)

    Welcome to the Sjogren's board. I am so sorry if you really do have it, especially since you have so much on your plate already with the Lupus and Autoimmune Hepatitis. That is hard enough without adding another condition, huh?

    Your conditions sound a lot like Sjogren's, but of course only your doc can diagnose you. You need to get moisturizing eye drops (like Refresh Tears, or Systane) because if your eyes are too dry, you can scratch your corneas and that can lead to severe vision problems.

    There are mouthwashes as well like Biotene, but honestly I haven't really noticed a lot of difference when I use it.

    For your dry skin, you might try some coconut EV oil. Just smooth it on your skin right after a shower. Don't use too much or you will feel like you are in an oil slick - ha ha, and it will stain you clothes too. Just a thin layer, and give it a minute to soak in. It does really well.

    One other thing is a salt water nasal rinse if your nose is dry. They put me on Pilocarpine hydrochloride for mine and it did wonders for my nose, throat and phlegm. It makes it easier to eat.

    You are always welcome here which should help you not feel so alone. Take care and let us know what the doc says? Meantime feel free to holler at any time..

  • That sounds like great advise 😀 I find the biotene gel works better thst the mouth wash . I hope you find out more at your next rheumy visit . Best wishes 🌸🌸 ps beautiful photo !

  • Welcome to this community - hope you can get a diagnosis and some certainty soon. Meanwhile I find lacrilube at night and hyloforte drops plus heat pads followed by massage for 20 mins per day really help. Salivex pastels for mouth. I'm in Scotland!

  • Thanks guys, I will let you know. At the moment I am battling brain fog...I cant concentrate and keep forgeting the words I want in conversation, also my feet keep burning....have an appointment with my optometrist on monday as my sight has worsened considerably....and my glasses are only 12 months old! Just what I need, more money spent on these rotten diseases! Ah well, head up and back into the fray! 😐

  • Lovely family photograph! That adorable little girl! I want one of those!

    Hi, I'm new here too. I was isolated, confused, and feeling pretty unwell, before I was diagnosed. Had been unwittingly, self caring, for years. Drank water and sucked lozenges so much, every day, as well as during the night!

    So, a bitter sweet pill, to be diagnosed, brought relief (oh, that's why I had all those symptoms), to despair (oh, I don't want all these symptoms to continue/get worse).

    Suffice to say, joining this group has, and does, help enormously. I no longer feel isolated. I am learning a lot here, to best manage the symptoms, and still enjoy life.

    I feel there are friends I can turn to here; you will too.

    Thanks for sharing! Good luck.

You may also like...