methotrexate and a dry mouth

[angelanewport10]

I have been taking 7.5mg methotrexate weekly plus folic acid x 6 days a week for mild R.A. I have always had some issues with a dry mouth at night but this seems to be getting worse. It is so bad some nights that I frequently wake up with the whole of my mouth and tongue completely dry. I drink water but within minutes it is back feeling dry again. I think there is a link to citrus foods. I avoid oranges, lemons, grapefruit and limes but I am wondering whether other fruits such as kiwi and pineapple (not listed as citrus fruits) which I still do eat, may be the problem. Any experience or advice would be very welcome.

[allanah]

Hi, yes dry mouth can be a big problem with RA . I would let your rheumy know on your next visit. I get a thing called secondary sjogrens which is dryness due to ra , I use gladosan spray or biotene gel especially at bedtime. If your diabetic be careful with the gel . I also do have to drink.water during the night and I get a salivary gland scan screening once a year.

It's annoying!, but check with doctor as there are other causes too x

[Boxerlady in reply to allanah]

I've noticed this since developing RA and my dentist said that it was a common symptom (he said that the lack of saliva can lead to more tartar build up so it's important to clean teeth more carefully.) I don't think that it's diet related, just another RA gift. 🙄 I sip regularly during the night and as well as drinking a lot during the day, suck sugar-free mints which helps.

[angelanewport10 in reply to Boxerlady]

Thank you for your reply. Yes, I really worry about the damage this might be doing to my teeth. I have just started using a mouth wash in the night too because my mouth feels so foul. 🙄

[Hidden in reply to angelanewport10]

An alcohol based mouth wash will make it worse. Biotene mouth was is recommended. Not cheap 🙄. Would be best to tell your dentist when you can go back as you may need extra care. I had fabulous teeth no fillings until all this started. Caps? root canals , fillings and now under the dental hospital for my gums. I regularly have my roots cleaned 😱.

[angelanewport10 in reply to Hidden]

Thanks, I definitely make an appointment with my dentist.

[allanah in reply to angelanewport10]

Yes my dentist have me fluoride toothpaste on prescription and a fluoride mouthwash too xx

[angelanewport10]

Thanks Allanah. I have a telephone appointment at the end of July so will definitely mention it then and ask for some help. It’s affecting my sleep so much and I also worry about the long term effects on my teeth.

[allanah in reply to angelanewport10]

Yes its SO annoying. Xxx you can look at sjogrens syndrome which has some similar symptoms for ideas x

[nomoreheels]

It was another med that caused my dry mouth problems, I’d been fine for the 5 odd years of having RD before starting it. My GP first prescribed Salivix pastilles but I didn’t find they helped so she prescribed Biotène Gel which did. I kept it on my bedside table if I needed it at nighttime. I think you can buy it ott, seems to remember in on the shelf in my chemists a while ago.

I couldn’t honestly say if citrus fruit made mine worse or not at the time, it doesn't now anyhow. I think the only way you could test out if it does you is to do an elimination test on each one.

[angelanewport10 in reply to nomoreheels]

I am so hoping it’s the medication and perhaps I could suggest a change for a while as I am fortunate to only have R.A. mildly at the moment. I know all the drugs have different side effects and perhaps I would be swapping one issue for another but sleep is so important to us all isn’t it and I am not getting a lot at the moment!

[nomoreheels in reply to angelanewport10]

It was amitriptyline not MTX that caused mine. I've been taking MTX since 2009 & it's not a side effect I had specifically from that. I would think there's a particular reason you were prescribed MTX, albeit low dose. When I was diagnosed I had little involvement, just my feet, & my first DMARD was hydroxychloroquine. Of course you're limited with dosing for HCQ, 400mg/day is the highest dose & so it was when that stopped working as well as it had that MTX was added. Unless there's another reason for stopping it, the MTX? Is it the dryness that's keeping you awake? As Allanah has said it could the the disease itself so swapping DMARD may not be the answer, especially if the MTX is working well for you. But, the person to ask is your Rheumy, meantime you could ask the advice of your local Pharmacist or your GP.

[angelanewport10 in reply to nomoreheels]

Thank you nomoreheels for your comments. I was diagnosed and have been on MTX for nearly 3 years now. It was suggested about a year ago that in time I might be able to try the milder drug Hydroxychloroquine but at the time they wanted me properly established on MTX because it has been working well for me. The dry mouth wakes me up and then I struggle to get back to sleep because despite drinking water, it dries out again before I can get back to sleep. I do have some insomnia issues (that’s another story 🙄- I am 49 and think a lot of it is my age - it’s worse the week before my period.) I don’t think the sleep issues are R.A. related but this is still all relatively new to me so thank you for telling me about your experiences.

[Hidden]

I get this like you for some time waking in the night with a dry mouth and tongue. It came and went. I have now been diagnosed with Sicca often comes along with RA. At the moment it is particularly bad mouth, tongue, throat are so bad they are very sore my gums are also inflamed because I don’t make enough saliva. It also effects my nose and eyes. I have saliva spray eye drops and gels and a nasal spray.

I would see your gp they may prescribe something. I think the weather may be playing a part as this is a particularly bad flare but I’m only guessing.

It’s horrible isn’t it .RA just keeps on giving 🙄🥺

[angelanewport10]

Thank you for sharing your experiences. I am sorry it is particularly bad at the moment. You may be right about the weather. I get inflamed gums too but no issues with my nose or eyes. Look after yourself.

[bunnycaramel]

I too get very dry mouth with methotrexate and have mentioned to rheumatologist but nothing was done. It’s very annoying as worse the day I methotrexate. I drink copious amount of water which I usually flavour with orange squash

[angelanewport10 in reply to bunnycaramel]

Yes, I am the same! Always worse the night when I take MTX. I take it at lunchtime and like you drink so much water but to no avail.

[charisma]

I hope you find relief with some of the suggestions made by others. For me, it was Leflunomide that dried up my mouth and my skin horribly.

I felt awful with such a foul mouth. It went back to normal when the drug was changed.

But when I looked up how to deal with the problem, citrus fruit was recommended eg lemon, as it stimulates saliva production. I also constantly had a bottle of water handy everywhere I went.

It is a very discouraging problem.

[angelanewport10 in reply to charisma]

I am so glad you have found some relief by changing the drug. Interesting about the citrus fruits being recommended. For me, I can’t go anywhere near oranges, orange juice, lemons or limes, even a little on a salad and I definitely have more problems with a dry mouth that night. Guess it proves once again how different we all are.

[medway-lady]

You need to ask GP for Glandosane not the natural flavour but mint is nice. Drinking won't help but a puff of this is great its also off 'script too and I think about £8 for a can which lasts ages. I'd just add my teeth are fine at 66 all still there with a few fillings, and it was LEFthat did it to me but it was a small side effect for a good drug for my RA.

[Hidden in reply to medway-lady]

Glandosane doesn’t work for me 🥺about to collect a new prescription for artificial saliva hope it works

[medway-lady in reply to Hidden]

It odd how these things affect us I found it worked well. Strange how no amount of liquid can have any effect on a dry mouth but does affect affect the bladder of course. lol

[Hidden in reply to medway-lady]

Pale pee is healthy 😂😂

[angelanewport10 in reply to medway-lady]

Thank you. I am prepared to give anything a try and I am sure my teeth will thank me also. I have just been on antibiotics for a tooth infection. I am convinced the dry mouth is causing me these issues. I am so pleased your teeth are fine at 66. I hope I can say the same!

[medway-lady in reply to angelanewport10]

A good dentist and a ban on toffee, he said chocolate was ok though. Saying that I spoke to him this morning as chipped a filling last night. He said open on the 8th provided they can get government inspector to approve. He also said most dentists could have kept on as have respirators and better hygiene than the GP's. First he knew was when he was watching the news, he said it was outrageous as so many had no doubt lost teeth and he was going to see shielded first and a lot more besides. Sounded cross but seeing his own patients first and they have a private car park so could easily have stayed open. He said increasing opening hours and all will be in for 6 days a week to catch up as concerned about patients and will let me know when to come in asap. Oh well it doesn't hurt so my fault for chomping hard on stolen from husband Everton mints.

[angelanewport10 in reply to medway-lady]

Ha, ha, that will teach you! 😂 Your dentist sounds fab. I do hope mine is the same. I agree, I do think dentists could have got back sooner. I know so many people who have had teeth issues, including myself and it has been such a difficult time.

[medway-lady]

Tell me about it I have kidney failure ! so count the liquid consumed. Not wine of course ! lol xx

[angelanewport10 in reply to medway-lady]

Oh dear. I am so sorry to hear that. I do drink a lot of water and not too much wine.

[medway-lady in reply to angelanewport10]

It's ok 24 % from 8 in 2018. An Acute injury gone to disease through time it'll not get any better but was good preparation for lockdown feeling that ill and being unable to have a shower on my own or even walk up the stairs unaided was nasty and at least now I'm fine. I can do 20 minutes on the Cross trainer at 10km per hour to stay fit. I'm sure it could be much worse, I don't miss banana's or grapes, oranges, grapefruit or baked beans. It makes having RA more difficult to treat but I've met some nice medics on the journey and aren't worried about it now.Its why I bang on about blood tests and how important they are. My injury changed the way blood tests are reported on in our County and I have an admission of error. I'm not bitter, no doctor made a mistake or missed something but I can't say more.

[Sheila_G]

I have the same. I think it is related to RA. x

[angelanewport10 in reply to Sheila_G]

Can I ask which medication you are on?

[Hidden in reply to angelanewport10]

I’m on methotrexate and entanercept

[angelanewport10 in reply to Hidden]

Thanks for letting me know. I am really hoping that there may be a link to methotrexate as this is the drug I am on. 🤞

[Sheila_G in reply to Sheila_G]

Apologies. I am on methotrexate. I don't know if that is the cause but I have to have a drink with me if eating anything dry like a sandwich as I can't swallow. I have had some very scary moments when I feel like I am choking. It frightens my husband too. x

[angelanewport10 in reply to Sheila_G]

Oh crikey, that sounds awful. Please take care. So far I only seem to have issues at night although I do drink quite a lot during the day. Methotrexate mentioned again, so I am hoping this is what could be the cause for me. Managed to bring my Rheumy appointment forward to 23rd June so I will ask about it then.

[Sheila_G in reply to angelanewport10]

I would be interested to hear what they say. I have never queried it. Good luck with your appointment. x

[angelanewport10 in reply to Sheila_G]

Thank you Sheila. I will let you know what they say. Stay safe.

[Sheila_G]

Thank you. You too x

[ROBERT_CARMICHAEL]

I started 40 years ago with mild shoulder joint pain and it was not until some 5 years later, long before I took methotrexate, that I got dry eyes and mouth and was diagnosed with Sjogrens. My experience with dry mouth has beeen that water effect lasts a minute at most . I have tried most of the other dry mouth remedies without finding any that was worthwhile, milk and icecream are about the best.

[Hidden in reply to ROBERT_CARMICHAEL]

Yes I find ice cream helps or a citrus ice lolly

[Hidden]

I also suffer from this quite severely but I'm not on methotrexate. I have RA but have not been given any particular treatment except painkillers - I think there are no consultants around here at the moment. At my request I was tested for Sjogren's (a cousin has it) but it came back negative. I have problems with dry eyes (so Viscotears) & very very VERY dry mouth at night. I've been prescribed Glanosan but find one called A.S. ('artificial saliva'!) works better for me. Neither of them last long so I have a glass of water & drink & whoosh most nights around 3 times, taking 5-7 sips to be effective. I combine this with a quick loo trip & usually (now - I used to be an insomniac champion ) go back to sleep. I am on Levothyroxine & Lansaprazole & asthma meds which might be contributory factors. I also take Oil of Evening Primrose (& when I don't my skin becomes drier & the front of my calves (sounds a bit agricultural) becomes dry, scaly dragon skin.) My only useful advice is to try and sleep through the problem. Make sure you're getting magnesium in your diet & drink a large glass of Oatley oat milk, warm or cold, around half an hour before bedtime. I supplement this with Ativa sativa (tincture of oats) during very wakeful periods or when I want to be sure to be refreshed next day. ... I also need to have water with me when I eat - especially salad - as I choke easily. I got tested but they tested my swallow (which is fine) not the salivary glands . I believe my oesophagus (?)(er - where the food goes to after you swallow) is also dry and easily irritated. I fear strands of rocket (tough and tickly) hidden in salad as Dracula fears garlic...

Sorry to go on! Hope you get it sorted to at least a bearable position...

[angelanewport10 in reply to Hidden]

Thank you Dartingbird for sharing your experiences and your advice - really helpful. Since your response I have managed to speak with my GP and she has prescribed Glanosan, which I have been getting on okay with. I too drink water and use it, then try to get back to sleep before it wears off. I don’t manage it every time but I have taken your advice about trying to sleep through. I had been getting up quite a lot. Still need to look into the oaty milk. I have been having a few tooth issues and amazingly got to see a dentist yesterday. He suggested that methotrexate could be the cause of the problems for me and as I am on a low dose, I could maybe talk to rheumatology about trying a different drug (albeit with different side effects). I will have a chat during my appointment on the 23rd.

Thanks again... I really appreciate it.