LUPUS UK

30,420 members • 27,002 posts

Sjogens

2 months ago•66 Replies

Hi folks , haven’t posted for a while - hope everyone is doing ok - my question is I have Sjogens as well as Lupus SLE and I have been using Holland and Barret lemon sugar free lemon capsules for the last 6 months which really help with my very dry mouth but they have now discontinued them so can anyone please recommend a sugar free alternative .

Here is pic of the beautiful Mira, she is almost 3 now - where have those years gone ? I have an app on my phone which turns pets into cartoon pic - very clever 🐶

Written by

svfarmer

To view profiles and participate in discussions please or .

66 Replies

•

CecilyParsley2 months ago

How fab is that app? I love it. Mira is so gorgeous. I hope you find something that helps your dry mouth. I tried cherry saliva chews but did nit like the taste much so now I use sugar free gum and sips of water xxx

svfarmer in reply to CecilyParsley2 months ago

👍🙏🤗💕

MEGS532 months ago

Hi SV

Sorry, I have no answers for your mouth pastels Q - but Bea is looking gorgeous, as usual.

Hope you're doing as well as possible 🤗🤗🤗

svfarmer in reply to MEGS532 months ago

thanks Meg - hope all is well with you too xx

MEGS53 in reply to svfarmer2 months ago

of course. We’re fighters 😘😘😘

SleepyWolf2 months ago

Hi, I like Peppersmith Lemon Mints (there are other flavours too) which I get from Amazon. They're sugar free with Xylitol, which is apparently a Good Thing for dry mouths. I'm also quite keen on Sula butterscotch sugar free drops (again, there are other flavours too) from Amazon or Lidl, though that's more to do with sugar/sweetness cravings than dry mouth. x

svfarmer in reply to SleepyWolf2 months ago

thanks so much - I will look these out xx

sabine in reply to SleepyWolf2 months ago

great reply!!

hopegalore202 months ago

What a stunning photo of Mira. Such a stunner. Sula Butterscotch Drops works for me. Hope you find a solution x

svfarmer in reply to hopegalore202 months ago

thanks so much I will give them a try xx

GloomyEeyore2 months ago

Gorgeous pic. Doesn’t work so well with hamsters! 🤣🤣

Hamster cartoon

svfarmer in reply to GloomyEeyore2 months ago

😂😂😂 your hamster looks super cute x

Suvi89012 months ago

You can get prescribable moisturising mouth gel or mouthwash from your GP!

It’s called Biotène for dry mouth.

Sugar free.

Alcohol free and antiseptic.

Also available OTC!

Plus drink more water particularly with meals to aid oral digestion especially with carbohydrates: pasta, bread, potatoes, cakes, biscuits etc. With Sjögren’s salivary glands don’t work properly!☝️👆

svfarmer in reply to Suvi89012 months ago

that’s great thanks so much x

honeybug2 months ago

hugs and kisses lots of love to you both sv

EJ ♥️🙏

svfarmer in reply to honeybug2 months ago

and to you honeybug - hope you are doing ok 🤗🤗💕

Lizard282 months ago

I get Salivix pastilles, they are sugar free. My dentist told me to suck ice cubes rather than sip water but not very handy if you are out and about. Salivix save the day for me.

svfarmer in reply to Lizard282 months ago

thanks so much - do you get them on perscription ? X

MrGrey12342 months ago

Hi I have lupus, not yet been diagnosed with sjogrens, but I get the sugar free pastels, and oralieve gel from the doctors, as recommended by my Rhumatologist, I am pretty sure I have it, dry mouth blisters, croaky voice, can I ask you have you had any problems with your thyroid, I have also been diagnosed with enlarged thyroid, which I'm waiting on an operation TIA x

svfarmer in reply to MrGrey12342 months ago

thanks so much - no luckily I don’t get thyroid trouble , hope your appointment for your operation comes through soon x

Lizard282 months ago

I get them on prescription but, if I forget to call or our GP is telling us not to call because of shortage of doctors, I have got them on Amazon, chemists do sell them as well. If I get my bloods done at my GP, the nurse can write me a prescription. I hate to be without them. I’ve seen me sticking one to the roof of my mouth during the night as I literally have no saliva some nights and end up waking up choking.

svfarmer in reply to Lizard282 months ago

it’s horrible isn’t it- I get the choking - thanks for your answer x

Coppernob2 months ago

Schnauzers are good for your health! We have two.

svfarmer in reply to Coppernob2 months ago

They are such lovely dogs arnt they? We have mum and daughter - what colour are yours ? X

donnabrain2 months ago

I also use the salivix, and get them prescribed, but have purchased from amazon when I ran out and had forgotten to re order.

My Dr gives me the salivix plus , which also has fluoride, but if you don't want fluoride the ordinary salivix pastilles will do

svfarmer in reply to donnabrain2 months ago

🙏💗

dg702 months ago

That's one spruced up dog! I get 'HAP+' and 'pur' xylitol sucking sweets from amazon, good flavours with both of them. I can't have any other artificial sweetener as it gives me horrendous gut ache etc. with only three or four a day. Xylitol is not so bad for me plus you have the added extra of it being good for your saliva quality as well as quantity. Of course xylimelts go without saying and I use them if I'm somewhere where my mouth will be dryer for a few hours or overnight as you only need one which lasts a few hours. Peppersmith good too as has been said. You can buy them buy the boxload on amazon which makes them cheeper but they don't last very long when sucking as they're quite small. I don't use chewing gum as those of us with delicate teeth take risks with anything chewy. I have many wobbly teeth just hanging on in there at the moment so I'm extra careful of anything sticky or too chewy. It's sometimes a case of see and try. Be interested if anyone has found xylitol sweetened sweets anywhere cheaper like aldi or lidl? I haven't had a chance to look recently.

svfarmer in reply to dg702 months ago

many thanks xx

Cas702 months ago

I use the sugar free pastilles from Aldi - every kind of flavour. When I get the cough I use the black Jakemans cough pastilles as they help me breathe. I can’t believer there isn’t some drug for Sjogren’s - it’s awful. They have the little boxes of sugar frees by the checkouts at Aldi - I find the mint ones are excellent. Good luck

svfarmer in reply to Cas702 months ago

thanks Cas70 - a trip to Aldi is on the cards xx

dg70 in reply to Cas702 months ago

Are they xylitol or sorbitol? I get the worst guts with sorbitol.

Cas70 in reply to dg702 months ago

ingredients listed : Isomalt - Sucralose, flavourings, acids, Lactic acid, Sodium Lactate and Menthol. - I have never had any problems with the menthol ones but we are all different. Xylimelts are best for me at night but I need two now. I put cucumber slices or apple in a glass of water and sip throughout day at home. Biotene products are good cucumber very good kept sliced in fridge and take it in car or apple - both have super liquid in them. I have had to go private now as I have spinal stenosis and local surgery is like Fort Knox you just can’t get a response - he has put me on 3mg of prednisone- what we should produce daily in our bodies- made such a difference to my life!!

dg70 in reply to Cas702 months ago

No good for me. Its hard to find cheap xylitol sweets. Never mind. Thanks for the info.

Tiggywoos in reply to Cas702 months ago

I like the xylimets Cas but do you find you wake up after couple hours once they’ve disolved ? X

Cas70 in reply to Tiggywoos2 months ago

no but I do have to use one either side of my mouth now. Horrible blooming illness - everything is uncomfortable 🙄

Tiggywoos in reply to Cas702 months ago

yes it’s 🩲 pants . I’m sure it makes us mouth breathe at night too 😳

Cas70 in reply to Tiggywoos2 months ago

definitely- I try to breathe thru my nose but it is so dry it’s painful and nothing helps. I just read about pilocarpine for saliva glands so I will request some.

Tiggywoos in reply to Cas702 months ago

ooh I’d be so grateful if you let me know how you get on with them as oral surgeon mentioned them to me . X

Cas70 in reply to Tiggywoos2 months ago

you’ll have to remind me, I see him about the 10th Feb x

Tiggywoos in reply to Cas702 months ago

good luck 🍀 x

Beakybird582 months ago

I use ‘Ricola’ sugar free sweets. The elderflower flavour actually makes my mouth water! Which is a first.

My sjorgrens seems to ebb& flow so maybe I’m just going through a good patch. Dentist prescribed really strong fluoride toothpaste. Which is really strong tasting and leaves me even drier- esp if I follow the instructions of not rinsing after use.

I’ve given up with Gp/ rheum/ ophthalmology- they just keep cancelling appointments. Been 3 yrs since I’ve seen anyone of note. My optician is of more use! Try ricola, come in loads of flavours and are only sweetened with Stevia, which I understand to be far better than any other sweetener. Good luck! X

svfarmer in reply to Beakybird582 months ago

thanks so much - I so sorry your lack of care in the NHS -I’ve been very lucky with my experience and have regular appointments with my consultant x

MoominMomma2 months ago

Hi, I use Salivix spray which the gp prescribed. It says peppermint flavoured but I’ve never tasted peppermint like that before!!! It’s an acquired taste!!! 😂 I also have sugar free boiled sweets from the supermarket, mainly Aldi.

I absolutely love your dog. She’s sooo adorable. 🐶😍 I was wondering if you could give me the name of the app you use as I’ve been looking for a while but there’s so many different ones!!! 😃

svfarmer in reply to MoominMomma2 months ago

thanks so much - here is name of the app - it’s free too - have you got any dogs? X

Dog

MoominMomma in reply to svfarmer2 months ago

Hi, thanks for sharing the app. Yes I have an 11 month old puppy. She’s a Jack Russell with a bit of Parsons Terrier thrown in. She’s our little terriorist!!!

Molly sat posing in the sun!!!

svfarmer in reply to MoominMomma2 months ago

oh she’s so cute - my brother has a pardon terrier , he’s very sweet too xx

MrsMarigold2 months ago

Hi SV. I use similar to what others have mentioned. I also gargle with coconut oil 3 times a day and take my meds with 1/2 teaspoon of it at night. Best MrsMarigold

formerly Titters

svfarmer in reply to MrsMarigold2 months ago

👍🙏🤗❤️

daniel552 months ago

Hi Svfarmer nice to see Mira again and I hope you are very happy in your first year of married life, Ihave read the comments so far I am surprised that no one has mentioned Pilocarpine tablets I take one 5mg tablet 3 times a day to help encourage the salivary glands to work,it does make a difference I get these on prescription and also on prescription the saverlix (not quite sure of spelling) these pastels are very good suck a couple when I need them they taste slightly of raspberry flavour hope this helps you .

I hope this makes sense as I am not my normal self at the moment just come out of hospital with severe chest infection and still finding my breathing a little bit of a struggle still on antibiotics and 40mg of prednisolone a day and will be on high doses for several weeks so a couple of weeks rest for me !!!! anyway good luck in finding something that helps you xxxx

svfarmer in reply to daniel552 months ago

hi Daniel so lovely to hear from you and thankyou so much for advice I will look into this with my GP . So sorry to hear you’ve been in hospital with a chest infection , take it easy and rest up - lots of love 💕

daniel55 in reply to svfarmer2 months ago

thank you, glad the information was helpful take care xxx

Tiggywoos in reply to daniel552 months ago

so sorry to hear you’ve had a horrible rough time of it . Do rest up and be super kind to yourself xxx

Ps I love pred 😉. Controversial I know 😊

daniel55 in reply to Tiggywoos2 months ago

thank you so much I am resting for another week or so before I think about going to do my voluntary work and I love my bingo !!!! xxxx

Tiggywoos in reply to daniel552 months ago

definitely get as much rest as you can in between moving a little bit ☺️. You’ll be back to the things you love in no time xx

BonnyB2 months ago

Mouth gel which I use at night

Mouth gel, which I use at night

BonnyB in reply to BonnyB2 months ago

I'm not sure about the sugar content of this one

svfarmer in reply to BonnyB2 months ago

that’s great Thankyou - didn’t know there was such a thing xx

BonnyB2 months ago

Taste good

Tasty

Tiggywoos2 months ago

fantastic post SV 🤗.and what great responses !!

Sadly Biotene gel did absolutely nothing for me and it cost a tenner ! The xylimelts (prob spelt that wrong ) help a bit at night but I wake up after couple hours when they’ve disolved .

Oral surgeon suggested the same tablet as Daniel takes but I said I’d hold off for a bit as apparently it can make your vision bit blurry and like you my eyes are already dry . Always bit of trial and error as we know 😘.

Gorgeous pic of your girl . Big hugs xxxx

svfarmer in reply to Tiggywoos2 months ago

thanks Tiggy - yes like you say trail and error - how’s Mr Tiggys face now ? Xx

Tiggywoos in reply to svfarmer2 months ago

still bald bless him and had 3 teeth out yesterday 🤦‍♀️. Please let feb be better than Jan !!!!!! Xxx

svfarmer in reply to Tiggywoos2 months ago

oh no - very expensive vets bill then - they are worth it though arnt they 🤗❤️

Tiggywoos in reply to svfarmer2 months ago

oh yes defo worth it 😘😊

daniel55 in reply to Tiggywoos2 months ago

I've been on pilocarpine tablets for sometime and I suffer from dry eyes but never had any blurry vision xxx

Schnauzer702 months ago

Good morning. I do not have a suggestion for you regarding mouth logenzes but I wanted to say how beautiful your fur baby is. I have two mini schnauzers and they are so lovely. Always make me smile. Good luck finding an alternative.

svfarmer in reply to Schnauzer702 months ago

ahh thankyou - yes they are the sweetest dogs arnt they - Mira was born right at beginning of lockdown - we also have her mum but anyway she wasn’t socialised properly but I’m so proud of her, I’ve done so much work with her and she is getting better every walk we go on, she’s not so nervous anymore . Would love to see a pic of your Schnuazers, and yes they make me smile every day xx