Night thirst and dry mouth

[Ophelia1]

Hello everyone. I have a diagnosis of lupus, am under the care of a rheumatologist and a gastroenterologist and have recently been prescribed methotrexate. At around the same time that I started experiencing the signs and symptoms of lupus about 7 years ago, I also began to notice that I feel very thirsty during the night. [I do not have diabetes - My blood and urine are always negative for glucose]. Every night I wake up at least three or four times feeling very very thirsty and usually drink at least two litres of water every single night. Unfortunately, this means I also need to pass urine frequently, so I am up and down several times, which interferes with my sleep. Has anyone else experienced night thirst and if so is there any good way of dealing with it? I'd really love to get a full night's sleep!!!

[Betty909090]

Hi,

It may not be diabetes mellitis but could be DIABETES INSIPIDUS,

(Pituitary gland involvement +hypothalamus ):

nhs.uk/conditions/diabetes-...

Check it out ASAP!

“The 2 main symptoms of diabetes insipidus are:

extreme thirst (polydipsia)peeing a lot, even at night (polyuria)

In very severe cases of diabetes insipidus,

a person can pee up to 20 litres of urine in a day…”

[happytulip]

diabetes insipidus leaped to my mind.

[Redfox25]

I have had that, it is awful. Terrible when I was pregnant but I have had it when not pregnant too. I don’t know the answer but I can sympathise. With me, it passed. I don’t have it now. I’m taking hydroxychloroquine.

[StriatedCaracara]

I have this too

Can produce saliva but during night mouth gets dry...as do other things eyes, gut etc.

Most noticeable since I had covid. Know covid can destroy goblet cells.

[Spandau]

I have a very dry mouth and am thirsty in the night and have always assumed it is the Sjogrens

[sarahalice in reply to Spandau]

I think your right Spandau, lupus and sjogrens go hand in hand.

[sarahalice]

Hello. It could be Sjogrens and its best you talk to GP or specialist about this. An optician can tell you if you are having problems with yr tears ducts.

You could try this. Try to not drink anything about 90mins before sleep at the same time as yr last drink, take a handful of pumkin seeds as this helps cut down night-time trips to the loo. You will be able to a throat gel that lubricants, which might help. Some people find chewing gum before bed helpful.

All the best

[LuluM25]

Hi Betty, it’s Sjogrens that causes my dry mouth and intense thirst but it’s during the day as well. Discuss with your Rheumatologist for a diagnosis as it can get serious and affect your kidneys.

[Haired]

Hi, I have Lupus and Sjogrens and have suffered with dry mouth during the night. I realise you have not been diagnosed with Sjogrens but I use the following which may help. I use Bioextra Toothpaste which is for Dry Mouth I find it very helpfull. They also have an Oral Gel which I sometimes use during the night. The Gel Mouth spray does not taste very nice ! The Speech Therapist while I was in Hospital recommended Bioextra. I was also told to just sip water during the night ( but I do not have Diabetes) helps cut down trips to bathroom during the night. I was on Methotexrate at one stage but had to discontinue because of side effects including chronic mouth ulcers.

Best of luck with your treatment and hope this might help.

[dg70]

Along with fatigue, dry mouth was the first sjogrens symptom I had. I couldn't drink enough and would wake to drink in the night with my tongue stuck to the roof of my mouth. Pilocarpine medication and xylimelts in my mouth at night which slowly melt during the night and keep your mouth moist have been a life saver. The pilocarpine has cut my water consumption from about 3 litres a day to half that. Perhaps a Rheumatology appointment might be good. I have both Lupus and Sjogrens its one of those common hand in hand autoimmune disorders

[KnitSewPurl in reply to dg70]

hi DG70 ,

that sounds like me at night and the day, and during the day I am so exhausted drinking atthe moment nearly 2.5 to 3liters a day so thirsty , really struggling to get through the day at the moment but as for peeing I am going about 3-4 times a day my nights are usually disturb due to thirst and toilet.

I am seeing my Rheumy end of the month hopefully she will be able to sort something out

[dg70 in reply to KnitSewPurl]

So glad you are getting checked out soon. It might not be Sjogrens but it would be nice to know either way. I used to get loads of headaches and migraines too which, since medication, they have almost gone. It felt like my brain was always dry before and drinking huge amounts of water helped only a small amount. The last thing you want to do is drink loads before bed and during the night because of the loo visits but it was always unavoidable for me before medication. Only up once a night now so sleep a bit better. I hope you get things sorted soon.

[RxMe]

Oh, can I commiserate! Nothing worse than having to wake up multiple times during the night, craving water! Xylimelts do help, as well as dry mouth lozenges (TheraBreath is one brand). The lozenges provide a surge of relief, but don't have the lasting power of the xylimelts.

[Ilse70]

Dear Ophelia1. I have been on Methotrexate since 2015 and I can honestly say besides the nausea some weeks, I have not experienced the extreme thirst. I did however wake up several times at night due to pain levels but the doctor has also added sleeping (approx 2 yrs ago) aids which means I now only wake up at night approx 4 times but once my body is adjusted I fall right back asleep which has improved my depression as I am now getting better sleep. I didn't get thirsty but got up to snack at night also while I was on the Prednisone and would make coffee then so perhaps if you are on Prednisone discuss that with your doctor? I hope this helps.

[lacmorin]

Xylitol tablets

[BK47]

hi Ophelia

Regarding Methotrexate I just didn’t get on with it so I stopped taking it. I was having awful muscle spasms and cramp and even torn muscles. Also my finger nails went brown! I blame the methotrexate . Since I stopped it I feel much better.

I hope you get on ok with it.

[Cas70]

Drink more during the day. Train yourself to breath through your nose and keep mouth closed during night. Xylimelts are small pastilles that can be stuck to the gums and teeth and they keep the mouth moist. In 7 years I have never had any problems with them (Mouth Ulcershop,Co.uk) There is a gel that is also excellent - Biotene. Dentist recommended Colgate Duraphat 5000 toothpaste to protect teeth. Good luck

On longish journey I suck Jakemans throat pastilles - brilliant -

[Tara1_]

Hello,

I also have dry throat syndrome. Have lots of little sips of water before bed and see if that helps .

[Canchungo_dog]

I feel thrist, I have dry mouth and eyes as well. Then I was diagnosed with sjogren syndrome. I have been prescribed eye drops and the dry mouth still some I was told there's nothing they can do, I do drink a lot of water day or night. It's really bad because of my flare ups and joints I can't get up and go to toilet all the time without help. I have SLE, sjogren syndrome, Raynaud's phenomenon, arthritis, skin rash. I am 36 and I was diagnosed with Lupus 2 year ago after complaining for 8 years about flares and stiffness.