Sjorgens help...

[Zeberdee1]

Sjorgens help...I have a very dry mouth and struggling to eat as it hurts the roof of my mouth this the worst I've ever had and been going a couple days. Any advice on what I can do is it worth going through the stress of trying to see a gp or is there anything I can buy over the counter?, I have the melts that stock to your gums but don't seem to be helping 😭

[MrsMarigold]

hi Zeberdee. I can only offer much empathy for your condition as I wait for diagnosis of Sjogerns as well. I have lupus. I’m tending towards warm tea; not hot and smoothie with lots of ice. I have the melts as well. They don’t work really and I’m not sure how good they are for us. My dentist gave me a mouthwash helps but as I’m in US it would not be of any help. But you could try with your dentist. If one thing is helping the most it’s 2 things: drinking very pure water; recently got a stand alone on your counter a water purifier from a company called Radient Life. Like it so much we have one for our camper. Next, gargle with coconut oil 3 times a day. This helps the palate of my mouth not feel like sandpaper. Last I just really suck on a lot of ice. Oh one more. I have a little massager. Once a month usually I massage my neck, salivary glands.

Pretty amazing it gets the glands “unstuck.”

Best Titters

[Spanielmadlady]

Hi Zeb..sorry you are struggling just now.im prescribed salivix pastels by my gp ...mild fruit flavour and sugar free. Hope you get some relief soon . Best wishes SML xxx

[weathervane]

ive the same problem Zeberdee . I use a combination of things to try and help .

I use biotene gel particularly at night for dry mouth, if my mouth is sore i gargle with salty water or corsodyl mouth wash . If i have mouth ulcers or particularly painful areas i use anbesol liquid. If my salivary glands are causing problems i also massage my face and neck . Its a constant battle, isn’t it 🤷‍♀️

[MrGrey1234]

hi i too have lupus sorry your having trouble with dry mouth, i have also been struggling with dry mouth, tongue sticking to roof of mouth very dry horse throat, and mouth ulsers, i have not been diagnosed with anything, just wondering if i should seek help fro. My Gp

[Chris21 in reply to MrGrey1234]

I would mention it to GP, they can see if there is anything in particular that’s causing you problems.

[Chris21]

hi zeberee1, I recently had the same problem, normally I just use the stick on tablets or cold sore cream (on lips) but it wasn’t getting better so I went to boots and found gengigel, I’m always sceptical with new products but this actually helped within 24 hrs the inside of my mouth was feeling ‘better’. I’m not sure if it’s like dentinox, it’s now on my list to use when I my mouth hurts.

[SufferingMike21]

Hi Zeberdee

I had the same problem my consultant prescribed me a disolvable steroid.

Which once disolved i gargle and rinse mouth then spit out .

I use as and when needed it really helps me

[dg70]

apart from pilocarpine which is only prescription a humidifier may help. I have found it helps my mouth and eyes. Getting moisture in the air helps

[MonicaT]

see if you can get some biotene gel from chemist. Its very good. Best of luck

[Zeberdee1 in reply to MonicaT]

just arrived from Amazon just giving it a try 🤞

[chrisj]

Sjogrens here as well, diagnosed some years ago. I had the prescribed pastilles and sprays in the early days and the one spray that I found was a good one was taken off script. The others weren't much use.

Eventually I stopped ordering either of them and these days buy Oralieve spray and use sugar free chewing gum as recommended by the doctors at the dental clinic, they were happy about the gum. I also buy sugar free polo mints as they make my mouth feel cleaner and refreshed.

I was prescribed Dermovate ointment by a doctor again at the clinic when my gums became inflamed to ease soreness. Its an external ointment and my gp was sceptical when she found out I was using it, said she'd check with said doctor and I heard nothing more. The ointment did and does help, I use it sparingly and have used vaseline in small amounts. I use Difflam mouthwash too, thats very good and its on prescription as far as I know. You can use that every 3 hours if needed, I recommend that one it worked on ulcers for me.

Check in with your gp xx

[DJK99]

Hi Zeberdee1.

I am sorry you are going through this. I have had this too off and on.

Do you have sores on the roof of your palate? I had the same for weeks a couple of years ago after a long period of stress.. and I do get it off and on throughout the year, to a much lesser degree.

When it is bad I usually ask the GP to prescribe the steroid gargle pills. You dissolve them into water and gargle and it helps just in the mouth area.

Also, I am sure you do, as you have Sjogrens and will be thirsty all the time I am sure(!) but please make sure you drink water all day - ie have a glass (or bottle if you are out and about) of water by your side all the time and drink sips al day - making sure you drink at least 3litres a day (unless you have another condition that means that would be injurious to you, of course).

And just make sure you eat lots of soft fruit and veg and soft foods such as wholegrain rice or mashed potatoes - and if really bad then high nutritious soup and porridge etc - as I had to for weeks when it was bad. I don't know if you take any vitamins or "greens" etc to increase your nutrients but I take a high B complex and Vit C every day plus Super Elixir by Welleco and now also their Collagen Elixir which has helped a lot.

Also - do you take folic acid? Are you on methotrexate? I take both, and my rheumy prescribed increasing the folic acid to every day but methotrexate day a few years back, and this helped a little - but that was for very bad tongue sores.. and they stopped with this increase.

Not sure if any of that will help.. but drinking as much water as you can each day is essential along with excellent oral hygiene. I'm sure you know all this, so please forgive me if you do ;)!

Always ask your clinicians too, of course, but if you are a member of the Sjogrens assoc here in the UK, their website is full of useful stuff.. and you can call them to see if there is any other advice they can direct you to.

I do hope things improve.

Best wishes, D

[Zeberdee1 in reply to DJK99]

thank you for all the advice, this is first for me with the dry mouth so I'm struggling I also feel really run down so must be a flare of Lupus/RA or now sjorgrens who knows the joys of auto immune diseases. Ive spoken with GP whos perscribed Nystan whixh is for oral thrush but I dont believe its that as tongue looks normal. Is worth a call to the rheumy? X

[DJK99 in reply to Zeberdee1]

Well I was prescribed an oral steroid mouthwash which sorted it out.. plus time and making sure v hydrated, eating soft foods only (no choice as killed otherwise!) and sleeping lots. Could you take a photo of your mouth and post it? Here is what mine looked like - is it like that? Quite hard to take a photo of inside of our mouth... But I just angled my phone into my mouth and managed to get some. I would call your rheumy, yes.. they'll know best - I hope!

Lupus flare, palate of mouth

[Zeberdee1 in reply to DJK99]

I've tried taking a photo 🤣🙈 not for posting here. It doesn't look as red as your pic. I'm wondering if it's sinus related because I haven't felt great???

[MorIlse]

Hello Zebeedee,

Have you tried gargling with baking soda for the sores? I would try it and wipe the sores with a Q tip and baking soda paste if you can tolerate, it is cheap and always worked for me with mouth sores.

[daniel55]

Hi Zeberdee I can see that you have already had quite a lot of replies I have Sjogrens and Lupus amongst others . Years ago I had a scan in London only to be told these exact words at the hospital when they scanned my salivary glands "your glands are knackered" Back home in Norfolk I was prescribed Savalix pastels they have a slight raspberry taste but I think they are one of the better ones I have tried and easy to carry with you when you go out. Since then I have also been prescribed Pilocarpine tablets to to and stimulate saliva and as someone else send they help a bit with dry eyes hope you find something that helps xx