Sjogrens syndrome

Hi

I have PBC but have started with a dry mouth and eyes over the last few months been to the doctors for a blood test that came back normal but my symptoms still persists, going to the opticians tomorrow to see if i do have dry eyes but not sure what the next step is. I have been given spray for my mouth but doesn't seem to help so not sure what i have if not sjogrens?

Any help most appreciated Thank you

9 Replies

oldestnewest
  • Hi tinajohnston

    Dry eyes and mouth are often listed as symptoms of PBC, but since many of us have several autoimmune diseases, the picture can be a confused one, and it can change over time as you have found.

    I'd suggest trying out different tear and saliva substitutes with your GP's help. I went through lots of eye drops/ointments to find the ones (preservative free) that I currently use.

    You may not succeed in pinning down the exact cause of your symptoms, but hopefully you can improve them so that you can enjoy life! Best wishes.

  • I've got PBC and Sjogrens which was diagnosed recently through positive ANA and ENA panel as well as MRI and Ultrasound. PBC itself can also cause dry mouth and eyes so you should raise with your consultant. Doctor can also give you artificial tears etc to help.

    Good luck

    Diane

  • Hello I suffer with dry eyes and mouth plus other things I have just started taking Hyabak caps for my dry eyes which was recommended to me by my optician worth a try.

  • Hi tinajohnston

    I have dry eyes but my dry mouth is not that bad. Used to use Systane Ultra but got to a stage where I was using them constantly and still my eyes felt awful. I spoke to the optician about it and he suggested I try

    amazon.co.uk/MGDRx-Eye-Bag-...

    I have been using this for about two months now and for me personally it has been a great success. I am now only using it once a day and have even forgotten to use it on a couple of occasions without problems.

    If you do try it let us know how you find it.

    best wishes

  • Iam like you in that the testing for sjogrens was negative.

    My consultant originally said the dry mouth and eyes were symptoms of PBC, and called it secondary sjogrens.

    However the severity of it has worsened so I have further testing in June to see if anything else is going on autoimmune wise. I cannot swallow so well, or breathe through the nose for the dryness and this disturbs my sleep.

    I have used many moisture promoting agents but have settled on the biotene mouth gel for night time It's slightly nicer than the spray and stays in the mouth longer. I use salavix pastilles during the day and drink loads. . My eyes are not so bad , worse in winter with the heating on so I use over the counter eye drops and I bought an eye mask to rest with it helps a lot.

  • I have dry eyes & mouth. I have viscotears it's a gel on prescription. & I use sugar free gum or sugar free lemon drops for my mouth. X

  • Hi tinajohnston, I have Sjorgens-- dry eyes that I take Restasis (Rx) in each eye, helps a lot, not so much dry mouth symptoms but my parotid glands are also involved-- get inflamed, blocked sometimes- quite painful. Blood work for Sjorgens was negative for me too, but symptoms still have to be treated. My ophthalmologist did the testing for dry eyes as I was complaining that the over the counter drops weren't working, he told me that several of his patients with auto immune conditions complained about dry eyes & were helped by taking these eye drops . ( my vision improved a tiny bit once I started taking the drops-- it's not just a matter of comfort) He said my corneas were like sandpaper & it was time to take more serious action than otc drops. Btw, I have had surgery for a stone in my tear duct -- the chemistry of tears & saliva can be affected in Sjorgens. I also have PBC, psoriasis, psoriatic arthritis, hypothyroidism as well. So don't think a blood test is the only definitive answer in some auto immune conditions eg some RA sufferers are negative in blood work for RA but they have all the symptoms. Hopefully you have a good relationship with your doctor & he/she will work with you to treat your symptoms, if not, find one that will. Good luck!

  • I have severe dryness I have Sjogrens diagnosed by a salivary lip gland biopsy years ago then diagnosed last summer with PBC, I was told dryness is a symptom of both I use eye drops and medication to produce moisture as I was having a hard time eating/swallowing.

  • Hi tinajohnston

    I have had dry eyes and mouth for about 20 years now. I saw my rheumatologist and she gave me a blood test for Sjorgren's syndrome. Sjorgren's is also an autoimmune disease often associated with PBC. But the marker for the sjorgren's didn't show up in my blood test so she diagnosed me with Sicca syndrome. I was told to use artificial tears 2 drops 4 times daily. But will be seeing opthalmologist soon as I am having to use the drops every 2 hours. He also suggested to use a hot pack on my eyelids for 10 minutes every night. I also have severe dry mouth and was told by my doctor to try biotene mouth wash, toothpaste, and mouth spray. As dry mouth can do a number on oral health. I have lost most of my teeth because of the dry mouth. Also suggested was sugar free lemon drops or sugar free gum. Due to dentures I don't chew gum and the lemon drops have citrus acid in them and that causes reactions of the GERD I have. They do have saliva producing prescriptions that work but they have nasty side effects that I don't want to deal with. I see my liver specialist next week and am going to ask her about it because I am now having dry throat and hoarse voice. I will suggest the one thing that has helped me though...that is I carry a water bottle everywhere. I am never without it. I take sips constantly. Best to you, let me know how things go for you!

You may also like...