Hi all,Spoke to the Rheumatology nurse today ,was suggesting sprays a d pastilles for saliva replacement.
But I want to know what any of you has use or have actually come across that is beneficial as a saliva replacement in day time and at night.
Problem has is I have already have problems with my teeth 1 molar cracked and 1 front teeth very small cavity apart from that the rest of my teeth is ok-now fixed . This has worried me quite a bit as all these years I have been fine until the last year or so my mouth started to get very dry and thirsty and I have been drinking gallons to keep it moist . Yes , I have had test done to check if I was diabetic it was neg.
Yes I use toothpaste , with Fluoride in them
Any advice and suggestions welcome
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KnitSewPurl
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Didn't order any on this script as I have plenty so didn't know that . Think my rheumy might of instructed gp to prescribe but they've never refused. I hope you get some relief. Just a thought after reading other reply do you take carbocistiene for your secretions ? x
Hi, my rheumatologist prescribed Pilocarpine, I take it 3 times a day and has been a game changer. Until this, my mouth and gums were so inflamed, ulcers on my tongue and my teeth cutting into the inside of lips and cheeks making them bleed. I need to change toothpaste as normal paste irritates my mouth and I still get a bit of soreness. However, apart from that my mouth feels pretty normal now. Worth a try?
Where you checked for Sjogrens ? If not asked to be tested.
I were prescribed a spray glandosane but what I found helpful were Xlimelts which you stick to your gum at night to keep it moist. Chewing sugarless gum is also recommended.
Google sjogrens and look to see if you have other symptoms such as, dry eyes, skin and scalp.
Yes , I did look sjogren up a while back I actually seem to fit the bill because of all the symptoms I have and had and now still having and recurring again like my gut -it was fine then now all of a sudden I am now is so much pain and having issues with it. Had to get them to change my meds because there were 2 meds recently started causing it. My eye is so dry no moisture I have been using hyloforte for years now they kept saying it is part of my SLE.
Mouth dryness happened over the last 1 ½ and it has got worse sometimes my tongue burns when I take nothing happens when it is dry.
I struggle even bring up my phlegm in the morning as I have so little saliva as I have bronchiectasis. But found if I take my steroid nasal spray(anti histamine ) it seem to be ok cannot keep taking it. I can just about bring them up.
My scalp is always dry no natural oils .I try not to shampoo too often . As this will make it even drier. It seem to helped.
I can not believe your Rheumy has not tested or considered Sjogrens. Lupus and Sjogrens go hand in hand ! I attended the London Lupus Centre for a while.
I am also on the hyloforte and viscotears gel. It is 'very important to keep your eyes moist. I am seen regularly at the hospital in opthalmology because I am prescribed hydroxycloroquine which has helped enormously with the flare ups.
My skin is very dry so i'm now using jojoba oil. My scalp is so dry I have scabs and even behind my ears is sore. I have just purchase the H & Shoulders shampoo and conditioner for scalp to see if it helps.
Pleeeease dont mention the gut. 😢 I am at present undergoing scans on my gut. It seems to be never ending. Keep a close eye on both your folate and B12, mine were low and now on injections.
Oh isn't life just great ? 😘
P.s My mouth was so dry I would wake up with blood in my mouth - talk about bride of Fankenstein. It really wasn't a good look first thing in the morning and now I sleep with a cloth over my pillow to save my bedding.
Hubby and I( have what they call a lupus psoriasis scalp- I actually come up with spots on my scalp) both use sulphate free shampoos (OGF) I think that is what it is called as both of us have dry scalp, they are quite expensive , we get loads of them when they are on offer. Since using them I have been ok . Also I don't shampoo my hair often only once a week because of the dryness to help and teach my scalp and body to produce its own natural oils back. It is one way of doing it.But my body is drier when I wash x2 a week compared to x1 a week having to still cream it with neutrogena. I don't sweat as much like normal people. Use gloves to do the washing usually found the hard way when I did it without the gloves for a short just for 2 washes while this week for one day my skin started to break down and cracked on my knuckles and started to hurt. I started to cream it immediately and back to wearing gloves again the same day.
Gut issue thought I resolved it by going GF and dairy free then this pass month it has not been right has diarrhoea,loose stool then now really bad stomach pains now for several days . Still cannot put my finger on what could have caused it only thing I can thing of is my recent drug that they put me on is the calcium(chewable) and alendronic acid as I found that every time I take it I get stomach pains and having to go to the loo.
Taking the Alendronic acid not sure if it has lactose in it , also make me gag because it is not coated . Having them changed to dissolvable and liquid version. Hopefully they will work better.
I felt like my gut was being turned inside out and my stomach was so painful. Yes , still got to cook tea and prep for Christmas.. as meeting up with rest of family next week.
More liquid in my food I guess from now on..
Seeing my eye consultant (macular)in Dec so will be having a chat with her about my dry eyes.
So yes , I have a very busy schedule with physio , IPASS weekly plus all the prep and cooking and my leisure (sewing)has been a bit of a decline at the moment - not much attention.
Has any of you btw got glands up on your neck mine seem to be on the left side? Under my jaw?
I sea that you are also on the hydroxy, I can only tolerate the Zentiva and Black Rock brand. I hope opthalmology are scanning the back of your eyes annually. My opthalmologist used to tell me to swab my eyes with baby shampoo or a bicarb mixture, my eyes would end up inflammed. I now use a heated mask for 7 to 10mins and then put a tiny bit of jojoba oil along my lashes. My consultant was amazed at the difference the oil had made, but you have to be careful not to get it into the eye.
I no longer sweat under my arm's and now have dificulty cooling down and dread the summer. My gland is swollen on the right side under my jaw which then affects my ear. From time to time I get little glands inside my mouth that swell up.
I have a variety of body creams but found jojoba oil suits me best plus its none greasy.
Why have they put you on calcium do you have a low vit D ? I see you suffer with migrains have you ever been tested for antiphospholipid syndrome ? I think if I were you I would want it ruled out.
I mentioned I went to the London Lupus Centre. I were so desperate to see somebody who understood. I was lucky enough to see Proff Hughes the founder of sticky clotting blood ( APs). I have what he called the big three Lupus / Sjogrens, hypothyroidism and antiphospholipid syndrome. It was the first time somebody understood my misery and actually listened ! It cost me but it was worth every penny.
I have suffered from gut issues for years and resorted to a liquid probiotic. I have had a lump in my gut / bowel since 2019 ! I have had an endoscopy of which the results didmn't look too good. I have had an MRI with a tracer dye and next Weds going for an ultra sound. It will now be next year before I get the results.
They put me on Calcium and alendronic acid because it took me more than 6mths to trace my results of my Dexa Scan which my GP will not except responsibility to getting the results from the place they sent me to 🤷you can imagine how frustrating this can be trying to get them to get those results long story short they found that I have a bone density issue . I even have proof that they sent me there and they referred me there what more do I need, they claim that they don't have have documentation of it 😂 what a laugh. They have not got a leg to stand on if I were to report them to the respective authority. So yes. I am furious. Osteopena they said ,told them to send the report and images to my Rheumatology consultant don't know it they did .
Talking about sticky blood , my blood has always been difficult ever since day 1 of diagnosis to flow all the blood ladies had to jab me twice to get bloods if they are lucky they might just get it in one shot. They always complaint my blood is very thick and gluppy difficult to flow kept asking me if I was on blood thinners or have cardiac issues.
The glands - I have had that for several years it has gone slightly down not as bad as before but in the mouth I thought they were abcess ?? Because I get them quite a bit when I flare up or have night sweats.it is under the gum like an abscess. Also inside the under the tongue - this was once.
My gut - had it for over 25years they kept saying IBS lol . Diarrhoea constantly sometimes 4-5 times a day. My hubby will say u in there again . Bloating, effected my bladder as I was getting infection after infection. So , I took the decision to cut gluten and dairy off my list totally. Been of dairy on some things but not totally when this happened I said right will have to be off it totally. All my inflammation in my muscles totally cleared and my joints just went within 2 weeks by 1 months it was a huge difference now this has started. I know I have also started a different Hydroxychoroquine manufacturer as well this week so I am not sure it this is the case as well I will try the calcium and alendronic if they are ok then it is the Hydroxychoroquine is the culprit.
It is awful the stomach and my gut !! Not sure what they put in that tablet. If it is vile ...
I take supplements Vits which has Vit D used to worry if my body had problems absorbing because of all that diarrhoea I was having.
Also I have issues with not having immunity to vaccines going back over 20years ago as well. This is with Rubella vaccine (vaccined x3) still did not hold vaccine and loads of my other vaccines were not found in my bloods which should be there . Only one found is BCG very low and Hep was also very low . Prob by now they would be non existent. So now have no idea if I do hold any vaccines at all just jab and hope for the best really .
Oh yes ,GP knows for years about it so does my Rheumatology doc for years no one know seem to know what to do or how to approach it .
Got hip and back issues to be content with at the moment as well to top it off. So keeping my head on the top and Keep smiling 😊
Just tend to try to resolve as much as I can myself and try to get on with my life as long as I am ok and my organs are not failing yet I don't have to worry I just look forward to the Lord's coming 😉
So going to order what I can online the mouth pastilles or gum see what I can find and for night time as well.
Going to find out if GP has prescribed my meds in a moment
Oh great, ostiopenia on top of everything else. I have hypoparathyroidism so have to take both Vit D and calcium. I am also hypothyroid so on thyroxine.
Dont under estitimate the nhs. I went to both pals and the ombudsman and I can tell you i got knowhere it was a waste of ruddy time.
With regard your blood ask to be checked for antphospholipid syndrome which is normally done by three blood testts done on different days.
I have a scoliosis of my spine so can relate to the back and hip issues.
I have so often wished I could close my eyes and not wake up but hey ho I face yet another day.
Pilocarpine prescribed medication. It's the only thing that gives me guaranteed saliva and less dry eyes. Just they have a few unpleasant side effects, wind, loose stools, hot flush after taking. I can only tolerate one a day with a big meal. I wish I could tolerate more as it works so well. I never go to sleep without a xylimelt in my mouth and often I have xylitol based sweets in my mouth during the day. Xylitol is expensive and non prescription but it actually is good for teeth and gums with no downside except cost. I stay away from gum as it would pull my teeth loose if I'm not careful. Water doesn't work for me. Dry mouth mouth wash works for a bit too and you can get that on prescription. I brush 3 times a day and floss too. So far my teeth are surviving but I did loose one last year and a few are slightly wobbly. Try and not eat very chewy food either. It's a really horrible thing and there's no easy answer. 😔
Afraid GP will not prescribe any at the moment. So until I see my Rheumatology doc I will have to be content with buying something from over the counter.
If you see an ophthalmologist/good optician and thy spot dry eye, they can at least prescribe the right eye treatments. I had to see an ophthalmologist once I got my sjogrens diagnosis for all the right drops and sprays and to get a baseline eye scan before taking hydroxychloroquine. At least this might get your dry eyes dealt with whilst waiting for your Rhuematologist. You will probably have to pay though but might be worth it.
Even a Corneal specialist (private) knew that I have dry eyes ,he was the one that noticed that I could not take any preservative drops as my eye were inflamed and infected post of my Cataract surgery on yes that is another story .eyes was inflamed and infected . Post surgery it was a bodge job by another hospital .My eyes were on steroids drops for 6months felt so much better when I was on it . With the combination with the hylo forte.
Prob need to find one that specialises and who knows how to deal with patients who is SLE with extreme dry eyes .
Exactly ring up and ask if they know about Sjogrens. I think Sjogrens and Lupus classically go hand in hand. If you get your own eye drops (which you can in a chemist) make sure you buy preservative free. I get hylo tears or hylo forte and at night when they get extra dry and crusty I use hycosan night which is more gel like and lasts longer. Always spray a few seconds after using the drops with actimist preservative free (or store equivalent) as that gives you an oil layer to keep the drops in. Anyway your optician/ophthalmologist will advise.
Thanks DG70 ,Was looking up at hylo selection to see if were suitable for me ,yes noticed that the hylo night did not have any preservative in them but has white paraffin. Will need to contact my corneal specialist and see if it will be suitable for or ok with the operated eye .
I guess its the paraffin wax that makes it thicker. There may be one without it. I use hycosan night aswell but that has paraffin too. Always good to check with an expert first.
Had a look on their website according to their site they contain milk proteins unfortunately I cannot have anything that contains milk/dairy due to my gut being very sensitive at the moment.
Thank you all so much for all your suggestions and your help . So far the gel tears are not available in the pharmacy not sure when they will be available so I am going to try another pharmacy nearby to see if they have it . And see if they have any mouth pastilles or gum for dry mouth .
I get Turkish gum, Falim which is completely sugar free and natural. It takes a bit of warm temperature (in the mouth) for it to get soft but it is much better than other sugar free gums available. I chew one a day and it seems to help with maintaining saliva. I don't particularly like chewing gum but it helps with saliva and very good for breathing! You can get it on Amazon. I got the tip from the book, Breathe by James Nestor. A fascinating read for breathing and a source of good health and etc. Good luck.
May I say thank you to KnitSewPurl for raising these issues that many of us obviously share, including me. I hope you do find some relief using the advice given.
And thank you to all those lovely people who replied with their advice, hints/tips, which I intend to use, as well as the abundant care and respect for each others' daily woes.
This really is a lovely community to access and even though we're all suffering with our own problems it's heartwarming to feel that mutual care and respect on a dark Sunday morning in November. Love to all 😍
Havee we you been diagnosed with Sjogrens by any chance? I’ve had RA and Lupus for over 40 years but recently diagnosed by my dentist as having Sjogrens. I thought it was a side effect of my pain meds but it’s gone further than that, my eyes are now affected too. But oh my goodness how awful is the dry mouth?!!
I have just bought Xylitol Melts, pricey but good for nighttime as you can stick them to your gums. I’ve also tried Salivix pastilles, they’re ok but leave my mouth feeling a bit slimy.
Good luck and if you find anything useful please share 🙏😊
Hi - I'm on so much mediation that my mouth gets extremely dry at times (well, completely dry meaning I can't speak, lick my fingers or a stamp etc,). I've been prescribed Biotene saliva replacement. It's fine - does what it's supposed to do. You just squeeze a little of the gel from the tube onto your tongue and immediately feel better
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