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[Swanie]

Hi all,

I just wondered if anyone has experienced this horrendous condition- Dry Mouth with loss of saliva and persistently peeling lips on a daily basis, leaving lips raw, sore, dry, painful making it difficult to eat, drink or talk?Also the dry mouth which can feel like cotton wool- since Feb and just prescribed Saliveze dry mouth spray and Salvix tablets - that don’t really help.

I have had this since Jan, ‘25, been multiple times to gps, been given Hydrocorsitine  cream, Fuscidin Acid Cream and Fuscidin H cream. These treatments calm it down but peeling just returns as soon as you stop treatment. One gp did a swab test to find bacteria infection and then gave me the Fuscidin Acid cream.

In Feb- got a blood test with suspect Sjogren Syndrome, but blood came back fine. Other horror symptoms this year- e.g. swallowing problems, dry throat, dry nasal passages, very dry ear canal skin,  just to name a few basically all linked to dryness in body.

Last year - April, ‘25 when terrible urinary/ vaginal dryness painful symptoms started- this is when I started Vaginal Oestrogen - 4-5 times a week as x2 a week not enough to stop symptoms.

Desperately looking for a solution to try and manage lip peeling in particular,  so I can eat and talk more comfortably. Worried that soon I will not be able to eat at all! Have asked for and pleaded for specialist referrals since August. My dentist is shocked by my raw lips and immediately made a referral- but says I don’t fulfill criteria for urgent referral, took photos and says it will take a while. My dentist did a saliva test- where he couldn’t get any saliva.

My gp has tried to refer me twice to rheumatologists as I have asked for referral - as I have all symptoms of Sjogrens Disease but they just get back to my gp asking for more blood tests- which keep coming back as fine.

Been to hospital when in terrible lip pain- but out of hours gp just says go back to my gp, try to get referred to immunologist and can’t give me any advice on how to help. Another gp  in hospital did say that I need to tell my gp to ignore blood tests results as my body is painting a different picture. But my gp keeps referring - but just gets told by rheumatologists- to do more blood tests - and basically can’t get any specialist care/ advice and I am going round and round in circles.

On Sjogrens UK website- it says there is not one test for autoimmune disease - Sjogrens Disease but multiple observations / tests of dryness from gp, dentist and optician, and some people can still have the disease even though does not show antibodies in blood which can appear normal. The gold standard for diagnosing Sjogrens is getting a lip biopsy - but if I can’t get a referral because of my blood results, can’t get a lip biopsy to check once and for all if I have it - and then get specialist treatment plan. Obviously, I am hoping it is not Sjogrens Disease as it can also attack organs.

I have researched endlessly and as post menopausal- have read that dry mouth etc  can be linked to drop in oestrogen. My research continually points to Menopause, Thyroid problems, Autoimmune disease in particular Sjogrens Disease , Diabetes - or a combination of Menopause and Sjogren Syndrome.

Have had an underactive thyroid for over 10 years now and take Levothyroxine. Have had endless blood tests- as a result of all these symptoms. Another theory I thought could be a side effect of long term use of Levothyroxine for underactive thyroid. Just got my thyroid checked last week for annual review and awaiting results, but I know that my thyroid was fine when in hospital last April after loads of blood tests.

Sorry , about the epic post- but just wondered if anyone else has experienced this chronic lip peeling with painful raw lips and dry mouth, especially as is progressively getting worse, more painful and now I can’t work, avoid talking, have difficulty eating and can’t go out to meet family/ friends due to severity of this symptom. If so do you have any tips to try to manage?

NB Been using Vaseline as advised by gp but no longer helps and over last 2 days gp suggested Cicloplast lip balm- which I have used for 2 days - but think it is making things worse- so looking for any advice. Currently, I don’t take HRT for body, just local vaginal oestrogen- Estriol pessaries. Anyone out there who has experienced these symptoms, any tips how to manage would be greatly appreciated. Thanks.

[Minusminnie]

Just replying as I didn’t want to read this then run as this whole situation sounds truly awful.

I can’t suggest anything other than going higher in some way to get specialst help. Eg email to your MP or Wes himself, any charities linked to this who might help.

Hope others will be along soon.

[bombsh3ll]

Sorry you're suffering like this, I also have dry eyes and mouth due to dysautonomia in my case although I have been tested for sjogrens, however mine is not as severe as you describe.

I would as suggested pursue this through your health board, MP or patient liaison service.

However the obvious question if even part of this is due to loss of ovarian hormones, is why are you going untreated for menopause?

Both estrogen and testosterone have a role in lubrication of skin, joints and mucosa, and whilst you may have to pay for testosterone (or go through a lengthy battle on the NHS and pretend it is for libido), you could probably get estrogen (with a progestogen if you have a uterus) quite easily from your GP.

Other suggestions include considering aggravating factors such as dehumidifiers, air conditioning, both necessary in my case but do worsen mucosal dryness, or excess heating.

I do use a lot of vaseline for my lips which works for me but have heard of a more potent product - you could probably find it online.

I also add squeezed lemon juice to all the water I drink which helps stimulate saliva production.

[Swanie]

Hi Minusminnie,

Thank you so much for replying.

I have looked up specialist referral but could not afford as would not be just an initial consultation, but probably loads of treatment/ tests. I did initially think I might need a dermatologist but my gp said it would be the mouth people which I am guessing would be an oral mouth specialist or ENT specialist or rheumatologist. I would love to get my hormones measured to see if that has a part to play. I have looked up the Sjogren Society website which has good general information. I never thought of contacting my local mp for advice and will persevere again to see if I can find any local charities.

I will continue and try to get a referral and look into contacting my local mp for advice if all else fails, as had never thought of that. At the very least if I could find out the cause of my dry mouth which must be the source of lip peeling, might be able to try to manage more effectively.

(  One gp over the last few months basically said if my blood comes back negative the rheumatologists won’t see me, even if I have Sjogren there is no other treatment apart from what I am using like mouth sprays and pastilles and once my saliva glands are ruined there is nothing that can be done. So basically the advice is suck on sweets!!!!!!  At this point, knowing that you can still have Sjogren with negative blood tests which is called ‘Seronegative’ , that a diagnosis would mean that I could have a specialist treatment plan to monitor my health / especially if any organ involvement and access to immune suppressant drugs, although deflated didn’t think was much point in battling the system at this point, as bad enough trying to endure with the debilitating symptoms. When I was in hospital in Feb this year for having low sodium and I told the consultant that I was awaiting the results for Sjogren - the consultant said that they treat patients with Sjogrens all the time and the condition can range from mild to severe.

Oh how I dream of the days when I had saliva!!!

Thanks again to taking the time to read my post and sending your suggestion. Greatly appreciated.

[Swanie]

Hi bombsh311,

I have thought about getting HRT oestrogen and the Progesterone as my friend has suggested this, as she takes this alongside vaginal oestrogen although just takes vaginal oestrogen x2 a week.

I am a worrier, and because I have been taking Estradiol vaginal pessaries since April ‘24 - after 2 weeks daily dropped to x2 a week but had to go up my dose as symptoms came back on x2 a week. I am currently on day on/ day off - have been wary and hesitant about going on systematic HRT as I use so much vaginal oestrogen.

Also years ago was told after an ultrasound that the lining of my womb was a bit thicker than normal but may be due to the fact that I was close to my period. I have had gynaecological problems over the years and have a phobia of getting checked down there. I have thought that taking systematic HRT could increase chance of bleeding that might lead to further vaginal examinations/ investigations.

I will ask my gp about systematic gp in my upcoming appointment as well as hormone testing.  I am definitely interested in testosterone and have researched this as well. At least I could give it a go systematic HRT for 6 months if I can get it and start the battle to try and get testosterone too- as my friend has just recently started taking it alongside vaginal oestrogen, Oestrogel pump and Progesterone tablet - recently started on Totesterone.

I also worry about the fact that having not experienced childbirth and being post menopausal , 60 years old  could go against me for starting systematic HRT. However, at this stage I am willing to try anything if there is even a slight chance of alleviating these gruesome symptoms.


Thanks so much for reading my epic post and going to the effort to reply. This is so much appreciated.

[CLKD]

Morning.  As oestrogen levels drop the body may become dry: inside and out; deep in the ears,  nostrils, skin, mouth, scalp, vagina, anus, legs ...... dry mouth is a known problem.  There are sweets that can active saliva production, something a pharmacist or dental surgeon can discuss - other than a referral were there any other suggestions? 

When U find something that eases symptoms, why stop?  If it's a chronic condition it will return without treatment.  As will vaginal atrophy, another condition that can be caused by loss of oestrogen. 

I didn't want children and would never take into consideration any impact on that either hormonal or physical nor would I even think about age restraints should I require treatments.  There are options of a dedicating menopausal clinic appt. though there are longs waiting lists.  Once potential risks have been explained there is no reason not to prescribe essential HRT [replacement is the word often forgotten!]

Go to a good pharmacists and ask for sweets, I remember buying them for my Aunt in the 1980s but can't remember the product.  Also, this is most likely due to drops in oestrogen, what are your periods up to?

Which 'research' are you looking at?  Many are as good as useless so that we end up down the rabbit hole.  R U aware that the NHS won't do anything other than 'usual' thyroid function tests, that for the T[I think]  blood tests 1 has to pay? MayB do a search on the Forum for thyroid function to get the correct info that I have hinted at.  Also blood tests are reliably un-reliable.

One has to get a menopause appt. in order for a GP to prescribe testosterone which may not be necessary until all other options have been investigated. Adding too much to the body may mean that 1 doesn't find out which actually might be working.

MayB make a note of your symptoms . Ask your Surgery to refer U to a menopause clinic for specific advice and do keep up with any treatment that works.  I find vaseline applied several times a day to the lips i.e. every time I eat and drink.  Sipping iced water can help too or sucking an ice-pop .....

Would U B able to take a cancellation appt for a menopause clinic should some1 cancel?  It would be short notice but could save time.  Ringing round your local hospitals or looking websites 2 C whether they run dedicated clinics might be a guide.


A rheumatologist probably isn't the correct speciality for this, a dental or ENT surgeon should be seeing you regularly to support this condition. 

[Swanie]

Morning CLKD,

Wow! You have given me so much information that I can use to push matters forward.

Dentist
There were no other suggestions from dentist apart from referral to dental hospital as he said that they can look carefully at my blood tests. My dentist did say that they got back to him saying that it is unlikely that I have Sjogrens if blood tests are negative, but I told dentist that on the Sjogren Disease UK website it says at least 30-40% of people with this autoimmune disease have negative blood tests and it can take years for people with negative blood tests to be diagnosed. The dentist took loads of close up photos of my lips and sent them to dental hospital and said to get back to him if anything significant changes. My dentist is the only one who has suggested a referral without me asking for it.

GP
The gp in Jan gave me Hydrocorsitine cream, then in Feb Fuscidin Acid Cream H then again in Sept and Nov, but does not stop problem. The gp has suggested persevere with Vaseline and said a colleague suggested Cicloplast lip balm to try. My gp did not suggest a referral but I pushed for it. Gp said in Aug they would refer me but would be a long wait, but when I asked my gp a few days ago about if any referral could be pushed along as urgent- gp said that she would do her best. But just like dentist- I am guessing the gps hands may be tied if I don’t fulfill the criteria for referral. So if that is the case when I see my go in next appointment - I will contact local mp and health board as suggested.

Optician
My optician has checked my eyes as they feel dry and gritty, but says that the dryness is mainly due to my Posterior and anterior Blepharitis that I have recently developed and to clean my eyelids daily with Blephasol Duo.

GP
For horrendous breakout of red spots all over my face in April- my gp gave me 8 weeks on Lymecyline antibiotics. Although I have suffered from Rosacea for many years- until this year it has been calm. But gp didn’t know what was the cause of the spots.
For recently- developed dry nasal passages- gp suggested NeilMed Sinus Rinse which I bought but reading the guidelines / warnings having tried as fluid could get stuck up in the nose and don’t want to add to my symptoms.
For my recent wax build up / practical loss of hearing in my ear- gp said ear canals are extremely dry - they have been itchy for years. Gp gave me olive oil drops to use to try to soften massive wax build up with a crust on top she said- and if didn’t improve to book an appointment for Microsuction wax removal.

I have kept a diary with traffic lights of all my symptoms which gp photocopies and puts in my medical notes too.

From your excellent suggestions my action plan:

1. Ask about referral again to mouth specialist/ ENT specialist-  in up and coming gp appointment-When I got my results in April and May from my endoscopy / gastroscopy and Barium Swallow- they spotted an abnormality in my throat- which is very rare - and in my last letter the ENT specialist she said that she would discuss with her team about further investigation- so I am going to phone the hospital to see what is happening. If I can’t get referral - try health board/ mp.

2. Ask about systematic HRT-  and how to get on Menopause clinic waiting list to be assessed- so they can look at my hormone levels etc

3. Try to get a better Thyroid test - even if I have to pay

4. Phone up hospitals - and ask if they have any Menopause Clinics- or info


All your suggestions have given me renewed hope and energy to push forward in trying to get to the bottom of this problem. Your suggestion about taking too many things and not finding the cause has giving me food for thought. Yes, I am stopping researching online- but when I did research it was on NHS websites and reputable websites for autoimmune diseases and the rare abnormality which I have in my throat which affects swallowing- my gp and dentist had never heard of it. I have been given no info in how to deal with it- so left with no option but to research online to look for info about what to eat and avoid eating to aggravate the abnormality.

Thanks so much for reading my post and replying. Highly appreciated!

[CLKD]

I've had a couple of other thunks, i.e. Savlon as well as looking along the shelves in the chemist's for what Mums would use for babies: ?? sudacrem ?? also springs to mind.  The importance is also to keep ahead with treatment, i.e. applying B4 the area/s feel dry.  I found with Vaseline that I would chew at it  .

Bonjela for any sore spots in the mouth, again applied regularly.

they spotted an abnormality in my throat   why the wait for a follow-up appt.?  If this is rare I would expect 2 B seen within 4 weeks at the very most. 

Also many opticians, as with GPs, arent' aware of how a loss of oestrogen in particular may affect the eyes ..... mine is married to a woman of similar age to me  so we discuss the ends and outs of menopause during my annual eye appts.. 

[CLKD]

When applying something new to the skin it may cause stinging initially but do perservere. [sp]

Get some eye and ear drops and use several times a day.  I see a private ear specialist as the NHS doesn't usually often offer wax removal.  Apparently my ear canals are very hairy   

Even DH requires ear drops 

[Aprilflower]

Morning CLKD,

Wow! You have given me so much information that I can use to push matters forward.

Dentist
There were no other suggestions from dentist apart from referral to dental hospital as he said that they can look carefully at my blood tests. My dentist did say that they got back to him saying that it is unlikely that I have Sjogrens if blood tests are negative, but I told dentist that on the Sjogren Disease UK website it says at least 30-40% of people with this autoimmune disease have negative blood tests and it can take years for people with negative blood tests to be diagnosed. The dentist took loads of close up photos of my lips and sent them to dental hospital and said to get back to him if anything significant changes. My dentist is the only one who has suggested a referral without me asking for it.

GP
The gp in Jan gave me Hydrocorsitine cream, then in Feb Fuscidin Acid Cream H then again in Sept and Nov, but does not stop problem. The gp has suggested persevere with Vaseline and said a colleague suggested Cicloplast lip balm to try. My gp did not suggest a referral but I pushed for it. Gp said in Aug they would refer me but would be a long wait, but when I asked my gp a few days ago about if any referral could be pushed along as urgent- gp said that she would do her best. But just like dentist- I am guessing the gps hands may be tied if I don’t fulfill the criteria for referral. So if that is the case when I see my go in next appointment - I will contact local mp and health board as suggested.

Optician
My optician has checked my eyes as they feel dry and gritty, but says that the dryness is mainly due to my Posterior and anterior Blepharitis that I have recently developed and to clean my eyelids daily with Blephasol Duo.

GP
For horrendous breakout of red spots all over my face in April- my gp gave me 8 weeks on Lymecyline antibiotics. Although I have suffered from Rosacea for many years- until this year it has been calm. But gp didn’t know what was the cause of the spots.
For recently- developed dry nasal passages- gp suggested NeilMed Sinus Rinse which I bought but reading the guidelines / warnings having tried as fluid could get stuck up in the nose and don’t want to add to my symptoms.
For my recent wax build up / practical loss of hearing in my ear- gp said ear canals are extremely dry - they have been itchy for years. Gp gave me olive oil drops to use to try to soften massive wax build up with a crust on top she said- and if didn’t improve to book an appointment for Microsuction wax removal.

I have kept a diary with traffic lights of all my symptoms which gp photocopies and puts in my medical notes too.

From your excellent suggestions my action plan:

1. Ask about referral again to mouth specialist/ ENT specialist-  in up and coming gp appointment-When I got my results in April and May from my endoscopy / gastroscopy and Barium Swallow- they spotted an abnormality in my throat- which is very rare - and in my last letter the ENT specialist she said that she would discuss with her team about further investigation- so I am going to phone the hospital to see what is happening. If I can’t get referral - try health board/ mp.

2. Ask about systematic HRT-  and how to get on Menopause clinic waiting list to be assessed- so they can look at my hormone levels etc

3. Try to get a better Thyroid test - even if I have to pay

4. Phone up hospitals - and ask if they have any Menopause Clinics- or info


All your suggestions have given me renewed hope and energy to push forward in trying to get to the bottom of this problem. Your suggestion about taking too many things and not finding the cause has giving me food for thought. Yes, I am stopping researching online- but when I did research it was on NHS websites and reputable websites for autoimmune diseases and the rare abnormality which I have in my throat which affects swallowing- my gp and dentist had never heard of it. I have been given no info in how to deal with it- so left with no option but to research online to look for info about what to eat and avoid eating to aggravate the abnormality.

Thanks so much for reading my post and replying. Highly appreciated!

Hi, sorry if I have missed something in your posts but have you considered a reaction to toothpaste..

I have had problems twice, over the years, and have had reactions to two different toothpaste additives.  Can now only use Sensodyn original.

Sometimes it is just a simple thing that causes big problem.

[Swanie]

Thanks so much CLKD.

[Swanie]

Hi Aprilflower,

Yes, that was one of the first things I investigated and I am always at my dentist. I use a SLS free toothpaste - Sensodyne Pronamel since problem started- as dentist advised this. I get cleaning and polishing done every 3 months as advised by my dentist and I am always at my dentists.

Due to dry mouth and delicate membranes, my dentist last time did the cleaning and polishing with a sort of balloon covering to protect my gums from all water pressure/ friction etc during cleaning. He said that would normally prescribe an intensive fluoride toothpaste, because of lack of saliva but it has SFS so would make matters worse. I have got more decay as result of not having  saliva to clean in between my tooth.

I have started using just a pea sized amount of toothpaste instead of squeezing all over my brush - as the more toothpaste I use the worse the peeling is-and the friction/ movement of brushing just like eating and talking causes more peeling on my delicate lips.

I did buy online Oranurse toothpaste- free from artificial colours or flavours, non- foaming and SLE free. I showed dentist and said looks fine but noticed very little fluoride in it. I am a worrier and nervous to try anything I bought online and certainly don’t want to make matters any worse. Would only try it, if could buy in shop or chemist- but cant find it anywhere.

Thanks though for your suggestion.

[bombsh3ll]

Hi there is no point testing your ovarian hormones, menopause is a clinical diagnosis.

If you are postmenopausal, they will be low.

 I would aggressively pursue treatment with hormone therapy, this is really low hanging fruit.

I had the lip biopsy for sjogrens with ENT, however I think I was referred for it from the rheumatology clinic.

This may be something your GP could refer for directly.

Or because it is a one off, very minor procedure, it may be something you could look into funding privately (although you shouldn't have to).

[CLKD]

We don't require fluoride at our age so using a paste that gives relief is important to consider. After all, how much toothpaste would 1 have to swallow daily to benefit from added flouride?      Me - I would try that B4 telling my dentist if it works/not.

I spit it out!  can't bear toothpaste anyway  fussy about anything in my mouth   

I had forgotten the effects of SLS in paste, Sensodyne is my go-to ; otherwise chocolate, bananas, butter, jams cause instant, intense sensitivity in my mouth. Embarrassing when in a hotel for breakfast!

[Swanie]

Hi bomsh311,

That is a good idea about asking directly my gp for lip biopsy so I know once and for all if I have Sjogren Disease. As bit cautious about taking systematic HRT if have suspect Sjogren- until I can speak to a medical specialist or find some reputable info. about this e.g. Nice Guidelines.  Just finding conflicting info at moment saying be cautious of systematic HRT when have Sjogren but local vaginal oestrogen is fine. Want to take HRT if definitely don’t have Sjogrens, but need further consideration about taking systematic HRT if do have Sjogrens.

If she can’t refer, look into private prices, although just checking a few minutes ago and looks too expensive in my current financial situation of being retired on modest work pension at 60 and no state pension until 67.

 I retired early at 58 due to anxiety/ worry - no doubt exacerbated by hormone decline due to menopause- with the aim of continuing my well paid career on temp job basis. Was off a few times with work related stress and got counselling at one point. Wish I had thought of getting my hormones checked years ago, and maybe could have lasted longer at work until normal retiral  age of 60, so I didn’t have to receive reduced pension.

Although I loved working the odd day after retiring, with all my symptoms looks like I won’t be able to do again- although always hopeful that I can get things stabilised and under control and do the odd day of work to top up my pension, especially to pay all my dentist bills etc
 

Hi CLKD,
If feeling brave will try the Oranurse toothpaste with no flavours in it or ask dentist for any suggestions for flavour free toothpaste to see if helps.

Cheers bombsh311 and CLKD!