Huh Sjorgens just live with it!

Well last night I went to my first ENT appointment regarding my Sjorgens Syndrome. My main complaint is the excessive dryness in my mouth which makes it EXTREMELY difficult to swallow food, which has ultimately led to me getting anxious at meal times and throughout the day.

The consultant was very nice and had a great manner with me. He gave me a local anaesthetic and put a camera up my nose and down my throat. Luckily there are no lumps, lesions or ulcers so that is fantastic news! But my mouth (and nose) are dry. I do produce some saliva but not that much and I have to drink water constantly and with 90% of food mouthfuls in order to swallow.

I know its a chronic disease and I know there will be times when I have a particular flare up, but I did think there maybe something he could prescribe to stimulate saliva production. I already use the sprays and lozenges but its becoming harder to swallow. I've read that pilocarpine and cevimeline can be prescribed....has anyone had this prescribed to them??????

I can tolerate the pain, the tiredness, the dry skin and eyes etc, but not the mouth....any tips?

Sorry for whinging, I just feel a bit angry that I've not really been given an option.

Thanks

xx

13 Replies

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  • Hi, I have secondary Sjogrens. My dentist has put me on a high fluoride toothpaste called Duraphat and I have a spray - Glandosane, some mouthgel - Biotene and some pastilles - Salivix. Plus a mouthwash Biotene.

    I tend to carry sugar free gum around as that helps. And I almost always have to eat food that is not too dry. Soup with a sandwich. Sauces on everything.

    I am on Plaquenil which helps my Sjogrens as well as my RA. And when I am on MTX I am even better. But worse in other departments.

    I have heard of Pilocarpine but not used it.

    There is a Sjogrens community on the HU website - look under communities and I think its TASSA. I will check.

  • Yes, look at "My communities" at the top of the page, and browse down the list to Sjogrens Syndrome.

    Hope they can help.

  • Thanks for that I'm looking at it now! Cheers x

  • I know it sounds low-tech, but maybe a drop or two of glycerine in your glass of water?

    something that might help leave a slightly more viscous film than water alone.

    As for saliva, I always found the scent of lemons works for me to help with stimulating saliva production. always worth a go eh?

  • Thanks V! The ent suggested I start doing nasal lavage aswell, so I did my first one last night and low and behold found I had a lot of saliva after I'd done it?!? Not sure what the connection is with that but it worked anyway.

    I will try the lemons too...anything which helps! I wonder if that's why the sjogren foundation suggested lemon flavour sugarless drops???

    I've also ordered a vaporiser for night time as its supposed to help with nasal and mouth dryness!!!! Anything for an easier life is fine by me!!! X

  • I also have Sjogrens. I remember it started with an extremely sore throat, which nobody could diagnose, and then developed into the dry mouth, eyes and RA. It troubled me a lot in the first year. I used to sweat so much my shirt got soaked, but I had never before sweated excessively. Tonic water seemed to help me a lot (quinine?) and I drank gallons of the stuff. My teeth started to go rotten and were only saved by a dentist who knew her stuff. Thereafter and for the next 43 years I have had regular fluoride treatments and still have the teeth (well filled). Over the years the dry mouth has eased. It is still somewhat dry and affects my larynx and I still have a dry nose. I can never produce tears or cry. There are various aids to ease the dryness of your mouth and eyes which you can get prescribed by a GP. I think the Sjogrens element of my immune disease has eased somewhat over the years, but nobody, including the medics, seemed to understand the problem (near impossibility) that a lecturer has in speaking for lengthy periods with a condition like Sjogrens! I take Enbrel now, but don't think that that has done much for the ENT element of the Sjogrens.

  • I totally understand about the lecturing. I am a mature student and had to give a 10 minute presentation as part of my coursework, towards the end I totally dried out. I have to give a 2 x 30 minute presentations for my dissertation next year, but I'll just advise them prior that I need to drink.

    I'm encourage about the dental regime though. I have just arranged my first appointment with a new NHS practice. I was previously a private patient but I think judging by the amount of dental work people have warned me about, I think its time to go back to the good old NHS pricing structure ......oh I wish for a time when it was all free! ha ha

    Thanks again, take care.

  • Yes. It would cost you a fortune privately. Find yourself a good vocational dentist. Maybe that person will need to harden your teeth with fluoride before starting work on them. Re the presentation. As a last resort, you could record it in bits and then play it back altogether, with an explanation. If diagrams are involved you could go live on that.

  • I too have secondary Sjogrens and I agree that it is a real pain! It's very easy to dismiss dry eyes and mouth as just an irritation but, like you, I find swallowing food very difficult and have to smother just about anything I eat in sauce of some kind just so I can eat it. Apart from Biotene Mouthwash and toothpaste - which the dentist says have really helped with my oral health, I use Boots Expert dry mouth spray all the time (I find it better than the the Biotene dry mouth gel and better than the Glandosane I was prescribed by the GP). I still find I need to use it between every mouthful pretty much when I am eating but I do find it a good quick fix too in the night and when I am out and about. I also keep sugar free gum by the bed so that when I wake up in the night unable to swallow I can start chewing immediately and it does help. Just a tip on the Boots dry mouth spray if you decide to try it - if you buy just one spray bottle and then buy the bottles of Boots Expert Dry Mouthwash to top it up it is much cheaper - and it's the same stuff in both the bottle and the mouth spray. Hope you find something which helps you. One other thing - I am now on Rituximab infusions for RA and the consultant told me that there has been encouraging research into the use of Rituximab for Sjogrens too.

    Tillyx

  • Hi Tilly,

    I've read a bit about Rituximab ... fingers crossed eh. I'll try the Boots mouth spray because I think the Glandosane is ok but I'm prepared to find better.

    I've ordered some Biotene toothpaste but can't find the mouthwash but I'll check in Boots store, my local pharmacy didn't have any.

    Thanks

    x

  • I have Sjogrens and I take pilocarpine. I was on Evoxac first, but then lost my insurance so my Dr changed me to the pilocarpine as it was cheaper. Mind you, it is still $240 per month! but worth it. I too have to drink a lot with meals and all through the day too.

    My symptoms started probably in my teens with gritty eyes, but I just bore it for 20 years & never got it diagnosed until one day at work my throat totally went dry & I couldn't eat my lunch. I was diagnosed over the phone & prescribed pills immediately. I didn't see my Dr for another couple of months. I have had great relief with evoxac & some relief with pilocarpine. My eyes are better but my mouth is so dry still. I carry water everywhere. I have had dental issues & extremely dry skin for my entire life. Perhaps I've had Sjogrens forever.

    Hope you find some relief,

    Christine

  • Hi Christine,

    Funny you mention the dental issues and the dry skin ... I've had them for years too .... way way way before I was diagnosed with Sjogrens....the dentists thought I'd just ate too much sugar (which I probably did to be honest). And the dry skin...well everything I use is packed with moisturiser. I find when its really dry the best thing to do is have a bath or shower, then get out and put plain old baby oil on the wet skin, then put a terry towelling bathrobe on and big slippers .... skins feels lovely. And plain old Nivea or Astral cold cream for my face, especially in the winter.

  • Hello again

    Glad you have managed to get some Biotene toothpaste - I have to order the mouthwash too. You may not find it makes an obvious, immediate difference but hopefully it will help your teeth and general mouth health over time. I also find that a "swig" of the mouthwash can help during the night or sometimes before meals. If you find it helpful, you might find your doc can prescribe it for you because it is expensive - mine does now and that is a great help. Re the Glandosane - you might want to Google it because I think, when I did, I remember reading some reports that it is bad for your teeth - which is just what we need to avoid with Sjogrens.

    Hope some of this helps you a bit cos I know how difficult dry mouth and eyes can be.

    Tillyxxx

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