Jenny Member Posts: 3
edited 28. Nov 2023, 14:04 in Living with arthritis
I'm 44 years old, diagnosed with RA when I was 28. Currently managed with Enbrel injection once a week and ibuprofen.
I also have raynauds and just recently have sjrögens. This is just affecting my mouth at the moment but I feel it is by far the worst part of my arthritis yet. It is now 2am and I am awake yet again, because of the discomfort. I have to be up for work 4 hours. I am so tired and am getting no where with GP or trying to get an appointment with Rhuematology. I have a saliva spray and I have been watching what I eat and drink, taking good care of oral hygiene and I am getting absolutely nowhere.
I'd be interested to know how others cope with this?


  • frogmorton
    frogmorton Member Posts: 29,506
    edited 30. Nov -1, 00:00
    Hi Jenny and welcome from me :)

    I am lucky I have never had the dry mouth issue, but my late MIL used to get it. She had gels as well as sprays and a lozenge , but not sure which type. Maybe the pharmacist could advise in the meantime until you see the rheumatologist?

    I will pop into the 'café' in the chit chat forum and ask one of the ladies who goes in there to reply to you she may well have some advice for you

    Best wishes

    Toni xx
  • Kitty
    Kitty Member Posts: 3,583
    edited 30. Nov -1, 00:00
    Hello Jenny, I always feel so sorry for those waiting to be referred in this day and age. I was diagnosed 32 years ago with Seronegative RA, and it was just a few short weeks when I got my rheumy appointment. I was very quickly put on Sulphasalazine and this helped me tremendously. Also got diagnosis of Sjogren's which in the early days didn't cause too many problems. Then in 2012 I got cancer ad after the treatment was over I was surprised to be told I had become seropositive. Now I'm on Mtx and Leflunomide, along with Prednisalone for one of RA's bessie mates Vasculitis. (Don't worry, not all RA peeps get this). Also got Osteoporosis and Osteoarthritis. :roll: But my Sjogren's has become intensified. Stinks, doesn't it. :? I use Carmellose eye drops, Artificial Saliva and a nasal spray which help a little. I also chew sugar free chewing gum. Pain around my salivary glands and Parotid gland really bothers me. If you're interested, maybe you'd like to visit this website. https://www.bssa.uk.net/
    Benefits for joining the BSSA:

    Providing information and support to those affected by the condition
    Distribute a variety of literature including an informative quarterly magazine
    Operating a national members' helpline facility
    Hosting regular regional meetings throughout the UK
    Link members through our ‘make a friend’ scheme
    Annual medical meeting with talks from consultants and experts in Sjögren's Syndrome
    Online members forum
    Full access to our informative website
    UK membership: £25.00

    Very best wishes, Kathleen t69044

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • Jenny
    Jenny Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you both for your advise. I do generally manage quite well with my RA, it's just the lack of sleep at night with this sjogrens, its exhausting. Things always seem worse at night too.
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Jenny,

    I just wanted to give you a link to our info on Sjögren's syndrome. I have it too! For me the eyes are worst, I have weapons grade Vaseline that I use at night (according to my GP :P )

    I tried the saliva spray and it made me feel like lemons do to your salivary glands and it tasted too. I have a bottle of water on my bedside table and have got quite good at having a sip and going back to sleep, and I often sleep with a hand under my chin to keep my mouth shut, and in daytime I chew sugar free gum or sip as needed, mind I always drink a lot.

    Hope that helps
    Take care
    Yvonne x