LUPUS UK
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Mouth like a bird cage - anyone else always thirsty?

I drink a lot.

Average 2.5-3 litres a day.

I only drink 2 caffeinated coffees when I get up, before 8am to wake me up and help me get my children out the door to school. Then it’s decaf for the rest of the day.

My fluids are then tea, coffee, squash and water.

I haven’t drank alcohol for 13 months due to meds - which include mepacrine.

The last week my mouth has been drier than ever. Insatiable thirst. I reckon I’ve drank 4 litres some days.

I’ve also had a dry unproductive cough on and off for well over a year.

My dentist told me that my mouth wasn’t dry in February. But at Rheumy appointment 3 weeks ago he said it was dry.

Optician told me I do have signs of dry eyes and my Schirmer test was borderline. So I do use eye drops now - Hylo Forte.

Sjogrens is being discussed more and more for me but wondered if this is typical for sjogrens? Or can it be SLE too? Autoimmune overlap etc.

Are any of you thirsty like this?

Wendy xx

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Hello Wendy,

I still have a non-specific underlying diagnosis, which my rheumy usually describes as UCTD but which has also been described as ?Sjogren's and 'overlap syndrome'. My last bloods showed a weak positive for anti-dsDNA too, so the labels seem rather arbitrary. I'm always thirsty too. Most noticeable is my voice has got huskier - the Welsh Tom Waits, they do call me x

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Do you sing Delilah, Tom?

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Sometimes. Why? Why? Why? x

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🤣

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Hope Tom J feels better soon . Lou x

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Hi Wendy, I have lupus and sjogrens. My voice is deeper, huskier and there is less of it, if you know what I mean. It's almost like i run out of voice. Tom Waits, poor you! I'm sure it sounds that way in your head though, but other people don't seem to have noticed with me but I can feel the husk as I speak, weirdly. As for the sjogrens, I'd be lost without my saliva spray. I also have developed trouble swallowing, sometimes even my own spit won't go.

I must admit I am tired of having "syndrome" tacked onto the end of everything, I have 3 or 4 different ones. It always sounds as if, having run out of words to describe what you have, they give you the diagnosis, for example, shoulder impingement. Syndrome. When does the diagnosis itself become a syndrome? Anyone know? It sounds so false and almost made up, to me.

Sincerely and a gentle hug and a prayer for RAIN. x

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Thank you for replying and sharing your symptoms. It's always helpful to hear from others and hopefully newbies here will read and learn too.

Yes, I know what you mean about the labels. I think we all collect diagnosis here, syndromes and labels. These things never come alone do they?

We did have some rain, two days running but it's hotting up again today and I'm having a day hiding inside.

Wendy x

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I drink regularly...blame the sjogrens...Been studying the humidity & it's dry for us 45-50%, & that's if you don't have a fan blowing on you....very dry when your blown on. My throat is on so dry & tender, also think my headaches are uv or lack of water or both...... Can't say chewing on sugar free gum is my thing...may help, but a habit that is hard to start.... Maybe we can compare notes & try sipping instead..🍻 🍵. Welcoming tonight's rain......more humidity

ML

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Yes, I am sure that this hot weather is just playing havoc with me. making me more thirsty than ever and drier than ever. Hiding inside today! xx

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Hi Wendy, I too suffer from an extremely dry mouth. This is down to sjogrens as my schirmer was positive. I also had a lip biopsy which again was conclusive. I have a bottle by my bed at night, and always make sure I have some moisture in my food. Interestingly though, my urine indicates I am dehydrated despite the amount I drink.

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Thanks Les. Can I ask how your urine shows dehydration? My urine hasn’t been routinely checked. Rheumatologist didn’t do it at last appt in September- well I did a sample but she couldn’t find the results. Only been done since when I had urine infection. I need to get GP surgery to agree to do it for me.

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Look - here's a colour chart! Luckily, my living room walls appear well hydrated.http://www.urinecolors.com/themes/uctheme/assets/dehydration-chart.pdf

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Hi The way I determine dehydration in urine is the colour. It should be the colour of straw when normal. When it gets darker that is when it comes shows dehydration. Mine is routinely the colour of

Lucozade and sometimes even darker. There is a is a chart on the net I will see if I can find it.

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Thanks Les. Unfortunately my urine is always a neon yellow - I take mepacrine - the tablets are neon themselves and side effects are yellow wee. So I cannot accurtaely tell what shade my wee is.

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If that is the case ,then you would need to find out the specific gravity. I believe some lab sticks do this. Here is a link for more info. healthline.com/health/urine...

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I've not been diagnosed with sjogrens but I do get a very dry mouth and eyes particularly at night - not at all like some people with the conditions describe here but I just need to drink a lot. I combine water drinking with salty drinks now.

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I have sjrogens so need to drink all the time but I do find chewing gum helps stimulate saliva too so never go anywhere without it. My tongue is so sore because I wake up and my mouth is that dry I can actually lick a piece of paper and leave no signs of moisture. I use a special toothpaste Duraphat as it has higher fluoride so that the lack of saliva doesn’t damage my teeth xx

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Thank you for that tip re the toothpaste. I’ll try to find it. X

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Ask your gp to prescribe it. Xx

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👍

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colgateprofessional.co.uk/p...

I was prescribed this Duraphat toothpaste but in fact, I have now moved on & am having my teeth varnished with a fluoride varnish, it is supposed to be every 3 months. I see student hygienists at the Dental Hospital - they are very closely supervised but I'm happy to be a guinea pig!

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I have been taking Nunn electrolytes when really hot and found helps my dryness too. Mentioned by Tillyray in E Danlos HU, for pots. I have low blood presuure, hypermobility etc. I think if we have inflammation running riot we are bound to have dryness too. Lou xx

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Thank you. That’s a great tip for my sister too, just diagnosed with EDS and pots. Xx

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Just watch the potassium in Nunn if you have high blood pressure/heart issues (my issue), like the rest of the ingredients .....ml

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Good point. xx

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Thanks Maggielee good tip. I have very low blood pressure. My bloods done often. So right of you to point this out. Not one size fits all. Lou xxx

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I also drink a lot and am very thirsty. I don't think my mouth is particularly dry, as I do have saliva. However, my throat always feels dry.

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I’ve always thought I have saliva but Dr K definitely said my mouth was dry. It’s weird isn’t it??? My throat is always painful and sore. Horrible. Like a flu sore throat lol the time, without the flu. X

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Maybe I do have a dry mouth then. My throat has been like it for years. I also feel I need to sallow a lot and a bit like I have a frog in my throat and need to clear it or cough. And yes, I get lots of sort throats but never get a cold. By the way, my husband and I have both signed the petition and I've drafted a letter but haven't got round to checking it and sending it - been too tired!

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Wow! That’s amazing! Thank you so much for doing that!!!! I’m touched. I really hope we can gain some momentum. Last night John Mills the Chair of Vasculitis UK signed our petition and expressed his desire to join forces with this campaign! Chuffed to bits. He’s the man who wrote the chairman’s report in their news letter entitled “What’s Up With Wales?” Have you read it? X

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That's brilliant! No, I don't think I have. Will google it now. x

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Have read it. That was shocking. I can't believe, or I can but don't want to, that someone died because the doctor in Wales wouldn't follow the advice of an expert. Also, the mother of that poorly child must have been at her wits end. There is no way that she should have had to take him to an A & E in England in order for him to get proper treatment. It just shows how bad things are. If she had got the over the border referral he would have been treated much earlier. I think joining voices with Vasculitis UK is an excellent idea.

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I have also just read that article, thank you Wendy. They are so blinkered in their outlook, this is false economy, that child has been back & forth using resources in Wales & achieving nothing, yet had he been referred earlier, he might be in a much better position now & it wouldn't have cost any more than it has with all the messing around.

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False economy indeed. I am sure they are spending much more on many of us in the long long long long run. In the meantime we just get more poorly and lose our jobs and income . Lou x

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I know. it's because they do not understand these illnesses and are listening to the rheumatologists, who are telling them they can cope. Grrrrrr. x

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It's appalling but i think shows the welsh NHS at it's worst, Deluded. Arrogant. Full of their own self importance. And no real humanity or compassion for their patients.

If the doctors felt that their hands were tied because of the system and finances but thought it was wrong and genuinely wanted to help us, they too would be fighting with us.

Instead they have just let it happen. Increasing their self importance.

I get very angry and frustrated by it.

I have 40 members to my group now and don't know anyone happy with our local hospital, Withybush in Haverfordwest.

Wendy x

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So do I. Just have to get the British Society of Rheumatology to recognise our plight now......I have contacted them and the NRAS.

That article makes sickening reading doesn't it. Having 3 children, that fmaily went to hell and back. It beggers belief. I am just so confused as to why this has been allowed to carry on for so long??????? Why hasn't it pushed into the political agenda before?

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Hi Wendy , I always have a sore throat as well. For years now. I just saw my rheumy this week and he swabbed my throat to test for Strep. He said some people carry it with only mild or no symptoms. My results were negative though. I blame the Sjogens overlap with my SLE (anti-Ro and La and Schirmer test 1mm and 3mm!) I would like to see an ENT though to get a specialist opinion. I don't get very thirsty unless I am out and about even though my mouth is dry. My lower lip is chapped all year round but not my upper lip! I have many dental issues from dry mouth so be sure to get regular checkups and cleanings. One other thing to consider is kidney issues may also cause increased thirst so you should push your GP for that urine test. Mine is done every 3 months.

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My urine hasn't been done by rheumy or GP routinely for quite some time. I know I have visited rheumatology on more than 3 occasions and urine not checked. They do not do that routinely either. I had it checked a couple of months back for a urine infection but that is it. But that might be first time in 2 years???? I will push this next time at GPs. Thanks for the advice. xx

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Yes I am like that and with small red sores in mouth , Lou x

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Great to have such a proactive forum.....then again...It’s not unusual.....and it’s great living in the green green grass of home....people living in rural areas accept that they need to travel however the NHS must provide the hubs and staff for patients to go too. The food, milk and fish doesn’t come from Tesco it comes from our wonderful rural areas.

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I also think this is a "rural" issue. There are pockets of urban areas in England which are badly served and children/babies died, unnecessarily. A few of us do not live in London where you have no shortage of decent NHS service. In the North, you are lucky if you are near Machester, Leeds, or Liverpool etc. I know one area, known to be so scenic/rural, not so far from me, has no A & E but they/NHS managed to find money to set up the heinously expensive building as a coverup of some serious scandals. Politicians have no idea what people need, not want. They have money stashed away and available. They must be all deluded to think nobody would notice the poor healthcare in the area and are blatantly out of touch.

Wendy's case is quite horrific. She is stuck with one Rheumy, who can't care less and cannot go anywhere else in Wales. Lupus is generally a tricky disease to live with and the poor health care can add further stress, be it in Wales or poorly served areas in England.

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With regards to urine..,,this is brilliant:

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Yup, always thirsty! Doesn't matter how much I drink. Even when the water is all a-swish in my mouth, it feels as arid as the Sahara in there! (Ditto for the eyes at nighttime: dry, dry, dry! ) Constantly applying lip balm, too!

On a follow-up visit for LPR to the ENT doc last week, he again attempted to "milk" the salivary glands in my mouth, but needless to say was disappointed in the output! Apparently only one gland is actively producing saliva. He half-heartedly suggested a lip biopsy (I had already tested sero-negative for Sjogren's), but what would be the point? The treatment would be the same...and I've read of others having very painful seqeulae to the biopsy.

Yes, you are right, there is so much overlap in these autoimmune diseases. Officially, I am on HCQ for RA, but lupus remains a prime suspect!

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Thanks for taking the time to reply in that detail. It really helps. All kind of visions entered my head re your doctor trying to milk your glands......I was Anti-RO positive when first diagnosed but not sure where it has been tested since!!!!! I had a weak positive ANA when on steroids in 2016 but they didn't test any further!!!! It definitely something thatI am increasingly aware of, this insatiable thirst. I guess this hot weather does not help, I am photo-sensitive and so it may be aggravating everything too.

Best wishes

Wendy xx

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I'm increasingly dry in the mouth and drink plenty so my pee is the right colour. I had attributed the dryness to med side effects, but it's getting so bad that meds stick to the back of my throat and are hard to flush down. I can understand why meds taste so nasty ( unlikely a child would take one) but this is bad.

Is anyone old enough to remember junior aspirin? Back in the days it was fine to give children aspirin, it came in a lovely orange flavour.

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Yes, I have always been able to swallow large tablets. Take my 3 MMF tablets in one go. But recently noticed they get stuck bit, so taking 2 at a time with loads of water.

It's hard for me to tell with my urine as I am on Mepacrine. It makes your wee very bright yellow - the tablets are neon yellow. I was hoping that as it warned of making your skin yellow, it might make me look more tanned - as I am SOOO white due to photo-sensitivity - but no such luck!

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Old enough to remember better than Calpol!!

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Yes same to the dry throat but not my mouth itself. This is why Sjögren’s was doubted for me until I had my lip biopsy.

What I have learned is that our small salivary glands exist right through our mouths. And although my throat and the rear of my soft pallet can feel very dry, as can my lips and gums - the main part of my mouth is pretty moist.

As usual I think I now have learned more about the two main presentations of Sjögren’s - seropositive and negative - than most doctors. And I no longer care if that sounds bigsy because, let’s face it we know as fact that many doctors are either useless or worse - or else too overworked and in demand to bother over little things such as quality of spit and tears and blood.

So my knowledge has grown to understand that it’s not just about quantity with Sjögren’s, it’s even more about quality. So the viscocity of blood, tears and saliva and perhaps even pee and poo and sweat and other natural forms of moisture we produce are a large part of the main problems we face.

So the spit you and I are producing at the front of our mouths may be reasonably plentiful, but also viscose and will not contain the usual chemical profile of healthy saliva. Mine actually tastes salty and thick no matter how much liquid I consume.

My pee can be dark when I haven’t drunk enough or cloudy with WBCs but the other day it looked pale yellow and great but when the GP tested it it contained +3 of blood. This is quite normal for me but she doesn’t think it should be!

Similarly the Schirmers is a very poor test compared to the one most opticians run because there are loads of people with dry eyes for any number of reasons. But an optician can test the quality of your tears by how well they break up as they pass over the surface of the eye and measure the layer of mucin which is the deepest layer of film on the eye surface and needs to be there in order to protect our corneas etc.

I passed the only Schirmers I’ve had and have good milk yield (spit test) according to Rheumatology no 2 clinic so didn’t have Sjögren’s. Wrong!! Of course I have it but mine is seronegative and they should have been testing the quality of my saliva and tears - which are both shockingly poor!

My concession to dry mouth is Salivex Pastels with the odd sugar free M&S buttoscotch sweetie for a sweet and sour treat. However Xylitol is an ingredient of most of the salivary stimulants and this is high fodmap and really not good for people with IBS - so I’ve learned the hard way to be very sparing in my use of these sugar free products. X

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Thank you very much for your long and detailed response, as always, very informative.

I am hoping that these issues will be addressed if/when I get my referral to London - ha ha.

Wendy xx

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Oh heck Wendy - I’ll hold my horses and 🤞🏽🤞🏽🤞🏽 for you that pigs will indeed fly!! Xx

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If you did go and see Dr Liz Price privately for a one off she might write in her letter for your GP recommending Pilocarpine or Carbocysteine - which I keep meaning to ask about. Once it’s in a consultant’s clinical letter they have to prescribe it if you want to try it. Especially as she’s the Sjögren’s expert. swallowingdifficulties.com/...

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Yes, maggie-lee was recommended pilocarpine by her but she hasn't started it, as once back here, she was realised it wasn't good with high blood pressure and she has been discouraged from taking it. That's if I remember rightly. I don't have high blood pressure. Anyway, I digress.

I am sure that Dr K is very aware of the potential sjogren's issues with me. He has talked to me about the eyes and mouth and my dry cough for over a year now and he knows I was anti-RO positive at diagnosis. So I am sure that this would be explored should I get onto his NHS list.

However, if I don't get that authorised, I will have to consider all other options and Dr Price may well be one of them.

It's a nightmare, so many ifs, buts and maybes, but keeps me busy that's for sure.

Wendy xx

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I couldn’t face Pilocarpine either but carbocysteine is meant to be brilliant for those who struggle with swallowing and that’s me more than obvious mouth dryness. You could ask Dr K for this maybe? X

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Wendy & TT Just picked up on your current discussion GREAT 👍, Wendy was right I was worried about my high blood pressure & pilocarpine, but my rheumatologist who spent at max. 15 minutes with me said who going to monitor me if I take it, didn't fill me with confidence 😱.... I was still quite poorly trying to get back to work on a more regular basis... & I was adjusting still to the mycophenolate which she reduced due to my reduce white blood count..& my GP wasn't keen on the pilocarpine either so no medical support here to take when I was ready...

I forgot about the Mucodyne/carbocisteine which I was prescribed. May give it a try now & see if it does help with dry throat!!!! It would have been beneficial to have discussed these meds with rheumatologist appt a couple of weeks ago, but my doctor stayed in the other room & gave me the doc ',interested' in being a rheumi 😬😬😬😬 😨😨😨😨😰😰😰 as Wendy & I have discussed in the experience s of our care here in this nhs, instead the doc only discussed mindfulness& graduated exercise for symptoms.....

So currently trying to work out time (,and energy) to head back to discuss my current symptoms with Dr P about the medication she recommended for sjogren.

Will Google to read up on carbocisteine to familiarise myself with.....love sharing thanks for the discussion, will get back to you both of it helps....

Ps taking to ice cream 🍦 comes oh so soothing for throat 😁 ml

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that's ice cream cones

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Thanks for starting this post Wendy. All very informative.

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Have you been checked for diabetes??

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Yes, a couple of times and everything was fine. But very good point. Being thirsty can be diabetes can’t it.

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My mouth is always very dry so i have to have water in hand all the time.

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I am awake now (03:45) thirsty and drinking water on what's been the latest hottest day of the year.

I just searched thirsty to see if there were others like me! I've been especially thirsty this hot weather but am year round and have been since my systemic symptoms started in 2014.

I drink water all day every day, vast amounts . No Caffeine, no alcohol no fizzy drinks... Just plain water and decaf tea.

I have been wondering about electrolytes today.

I'm diagnosed UCTD. My dry eyes have been worse lately aswell, especially yesterday when I seemed to be hanging the bottle of Hylo Tear over my eyes all day... I've been awake since 2am and have put drops in a few times since then.

I don't go out in the sun, I do anything I need to do outside of the house before 10am, the dog is walked around 7am or before and after 7pm. I'm keeping the house as cool as possible.

I can not quench my thirst no matter how much I drink. I use biotene products to lubricate my mouth.

This is the first time I have ever used my phone during the night.

I have drunk 2 pints of water since 2am. I have a pint glass on the bedside table with plastic bottles in a line behind it as refills!!

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Good morning.

You poor thing! I have woken with a dry mouth a few times but have been able to get back to sleep.

I think, like you said, this long spell of hot weather that we aren’t used to, is playing havoc with our autoimmune illness.

I have 3 children and I do go out. But I do wear clothing and UV tops, shoes, a hat, sunglasses so little of me is exposed and that has factor 50+ applied.

But I think no matter what precautions I’ve taken this year, there’s been more UV than usual.

I tracked my fluids yesterday and I did drink 4 litres.

I thought it had been higher than my 2.5/3 litres.

I’m amazed I’m not up loads during the night to wee!

My husband has the next two weeks off work and we have family coming to stay, so beach days are inevitable. Ive bought myself a new UV beach tent to hide in.

Take care and thanks for replying. Hopefully this post will help others and it’s always good to know we aren’t alone or imagining things too!

Best wishes

Wendy

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Hi, I have dry eye and dry mouth syndrome and have Clinitas drops for during the day and a Gel at night it does work for me. My dry mouth was not diagnosed 'till 8 years ago by my new dentist and she said that was why I was loosing teeth - mind you I am 71. I have CCT tablets to suck. They are a mild lemon flavour and I never go out without some in my handbag and keep them by my bed at night as it wakes me up with the Tickley cough that you mentioned. I am gong to see my Doc about that as it is annoying everyone else as well as me now and I am not getting a real restful sleep, it is embarrassing when I go out to a play or for a meal with friends as people on other tables stare at me.

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Hello. Thanks for replying. Yes, my cough can be mild and tickly but then sometimes quite frightening, hacking, choking, like I am struggling to breath. The family have got kind of used to it now but if it happens in front of others I could die of embarrassment. Thanks for the tips too. I have lots to discuss at my next GP and Rheumy appointments. Best wishes. Wendy x

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