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Sjogrens - dry mouth spray

tillytoptillytop Posts: 3,460
edited 2. May 2011, 07:01 in Living with Arthritis archive
Afternoon peeps

I know that there are others on here who struggle with Sjogrens (eg very dry mouth and eyes) secondary to RA so thought this info might be useful. Apart from using Biotene dry mouth toothpaste and mouthwash, I rely heavily on my dry mouth spray at night and for when I am out and about. The one I have been using from Boots has now been discontinued and I was getting a bit desperate because I couldn't find an alternative and the one prescribed by the GP is not very good and has a reputation for being very acid and potentially causing tooth erosion - already a problem if you have a permanently dry mouth. But today, my husband discovered that Boots Expert Dry Mouth Mouthwash is, in fact, exactly the same as the discontinued spray and is still available. One bottle of the mouthwash will fill about 10 of the spray bottles so the cost is hugely reduced too. So off to Boots tomorrow to stock up. :lol:

Anyhoo, hope this info is useful.

Tilly xxx

Comments

  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Thats great Tilly, thanks for that info. I have just been diagnosed with this in addition to my other ailments. My gp prescribed Glandosane spray, I hope that isn't the med you are talking about. I already have to go and get an erosion filled in at the gumline, it has eroded down to the nerve. Is their no end to the delights these diseases put us through??

    Where do you get the Biotene items from? I have heard of them but not tried them. I am reluctant to spend on something which may not work. My spray is ok but shortlived.

    I will have a look for that mouthwash.

    Thanks
  • constableconstable Posts: 2,115
    edited 30. Nov -1, 00:00
    Hi Tilly,

    I don't suffer with RA but I have a very dry mouth and apparently old eyes which are ver much drying out. Mine is due to other meds I have to take. I'm always chewing gum, nasty but it helps but now I shall try some of the mouth wash you mentioned.

    Thanks

    Karen xx
    Karen xx
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Karen and Suzygirl

    Biotene toothpaste and mouthwash are available in Boots or your local pharmacy should be able to order it for you. Tis expensive but, for me, it has made the world of difference and my dentist said my teeth and mouth were in really good health last time I went (unlike in the past). I have found that you do need to use it regularly for best effect.

    The mouth spray is not long lasting but is my "quick fix" when out and about and when I wake up in the night and have difficulty swallowing.

    The Boots Expert Dry Mouth Mouthwash didn't work well for me as a mouthwash but, as a spray it is great for instant relief. My suggestion would be to buy some breath freshener spray or similar and empty it out so you can fill it with the Boots mouthwash instead.

    Suzygirl, unfortunately it is Glandosane I was talking about. I found that it didn't help me and I read about the tooth decay potential when I looked it up on google. May not be right but don't want to risk it, specially since it didn't work for me.

    Re the dry eyes - doc prescribes "Optive" eye drops for me which really do help and are longer lasting than things like Optrex. Optive is available over the counter but it is expensive. I also use Lacrilube eye cream at night - messy, but effective.

    Really dry eyes and mouth are horrible aren't they? I'm really struggling with my eyes at the moment. Eye drops help but are not very long lasting. Eye cream helps but then I can't see. :roll: Difficult to explain to people who don't have this problem why just having a drink doesn't help the dry mouth. I find that I need to drink literally pints of water when I am eating, just to be able to swallow my food and I need to smother any sort of even vaguely dry food with sauce of some sort. Ruins the taste pretty spectacularly. :sad:

    Love Tilly xxx
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Tilly, I agree the dry eyes and mouth are a real nuisance. I always have to carry a bottle of water and sweets around with me. It has affected my skin as well now, which is unpleasant.

    It is a small symptom that causes a lot of misery. I choke on even water as my throat is too dry to swallow, and when I wake up in the night, its horrible. Seems as though the remedies are not particuarly effective either.

    I will have to try the lacrilube, I use viscotears which is ok.
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi again Suzygirl

    I used to use Viscotears until the eye consultant recommended I try Optive. He explained that the thicker eye drops are more effective and I have found Optive to be much better. The Lacrilube is a cream so you can't see after you have used it but I use it at night before bed to try to stop my eyelids sticking to my eyes in the night and scratching the eye surface. Sometimes when I wake up in the night I use it again but I think it's worth the messiness, my eyes just having healed after the last scratched-eye episode.

    Not being able to swallow can be really scary can't it? That's when my little bottle of spray comes in handy cos I can just direct it at the back of my throat and get instant relief. Tha's why I was so desperate when it was discontinued.

    Oh the things we put up with eh?

    Tillyxxx
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Tilly, it wasn't till I mentioned to the optician about my eyelids sticking to my eye during the night that I was offered the eyedrops!!! I had already had a bone dry schirmers test, but I didnt understand the significance.

    Recently I went to the dentist and was asking about my blood blisters, ulcers, dryness etc and he said it was because my glands were always so swollen. A visit to the docs confirmed it was sjorgens. I have put up with a dry mouth for years and never mentioned it, as didnt think it was important and always something more important to discuss.

    Amazing really. I will ask about the lacrilube and optive when I next go.

    Thanks again.
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi again Suzygirl

    Know what you mean - I reckon I have had Sjogrens for many years but it was only after having real problems with my eyes (ie I couldn't see!!!) that it was properly diagnosed. Sounds as if your Sjogrens is more severe than mine - and you have my every sympathy.

    Oh yes, do mention about the Optive and particularly the Lacrilube sooner rather than later. Particularly the Lacrilube because it should help prevent damage from the eyelids sticking at night.

    Love Tillyxxx
  • penny44penny44 Posts: 46
    edited 30. Nov -1, 00:00
    Just wanted to let people know the biotiene products can be prescribed by your G.P. I don't use them myself but recommend them to some of my patients. Hope your all having a good weekend Penny x
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Thats interesting thanks Penny. The cost of being ill really does mount up!!
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Thanks for that info Penny. I had read that they were not prescribable so it's good to know that isn't the case. Thanks again.

    Tillyxxx
  • mp1952mp1952 Posts: 425
    edited 30. Nov -1, 00:00
    Thanks Tilly - this is really useful (I have dry mouth now as a side effect of Humira)..

    Marion x
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