Dry mouth: Hi everyone I have bee on methotrexate... - NRAS

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Dry mouth

Hi everyone

I have bee on methotrexate injections now 6 months. Lately I have to bring a pint of water to bed as Im waking up at around 4 am with sever cotton mouth. Now I do take Certirizine hydrochloride which is an over the counter antihistamine now and then as this helps with the itch I get in my left hand which started only 3 months ago. I have read about secondary sjorgens disease and hope its not that as my eyes are ok...not dry at all. Any advice welcome.

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Hi Frankiefocus

I did not get that with MTX Metopen but we all react differently.

I did have excessively dry mouth with leflunomide though.

I too was afraid it might be Sjorgen’s but symptoms disappeared when we stopped LEF.

Best just ask your RA advice line or Rheumatologist. 🙂

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Will do thanks

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Hi frankiefocus

I’ve been on methotrexate for over 3 years and I suffered with dry mouth I put it down to this. I’m now getting dry eyes,skin and have had trouble swallowing now and then as well . About to be tested for secondary SS. I think it was an early sign. It’s worth mentioning to your GP and Rheumy

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Will do thanks

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Yes I get a dry mouth too. It has improved, not completely resolved since I stopped MTX.

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I'm going on MTX as soon as I see my Rheumy, so this is worth noting, but my immediate thought, which my GP agreed with, when first suffering from inflammation, some years back, was I'd best take on more fluids to ensure my defenses had enough to cope with the various swellings.

Guess I'd better prepare to take on a lot more now. Lol.

Obliged.

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The patient information leaflet for certirizine gives dry mouth as a common side effect that affects 1 in 10 people. The leaflet should be in the box with the pills.

Which is logical as it is also used to tackle allergic rhinitis - or runny noses - so must have some form of drying effect.

So it could be the certirizine rather than the MTX, or the combination. Have you told your rheumy that you are taking OTC anti-histamines? Always good to tell the, absolutely everything you take.

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I will call her today about this just to be safe. Thanks hh

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Hi Frankiefocus, I’m a rheumatoid and have had this problem too, not just at night but during the day sometimes too. I do drink plenty of fluids to help but the thing which has changed all this is that I buy Salivix over the counter at the pharmacy. It’s just a hard pastille that you suck and it gently stimulates the salivary glands so your mouth is kept pleasantly moist. During the night, if I wake with a dry mouth, I pop one between my gum and lip and it very, very gradually dissolves; sometimes I can wake 4 hours later and there’s still a bit of the pastille left. They’re not cheap being around £6 for a box of 50, they’re sugar free and you can get them with added fluoride. I do suggest you still drink plenty of fluids and check with your GP or Rhuemy or pharmacist that it’s okay for you to have them, but they are well worth trying. I’m not advertising I’m just recommending something that really works for me.

I hope this helps as I know how uncomfortable a dry mouth can be.

Love, Legs x

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Thanks Linda i will check them out x

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Sounds like the start of sygrons that’s how mine started speak to your consultant theyil do tests

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Try biotene gel at night

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You could try Oralieve dry mouth gel/spray. I think you can get a free sample on their website [oralieve.co.uk] - might be worth a try

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My dentist told me I have a dry mouth and I have noticed that I need to gulp saliva far less than I used to when she's working on my teeth. It's not too bad though and doesn't really bother me. That reminds me, I have a dental appointment for a filling in a week or so. :-( I haven't taken methotrexate for a number of years and have always thought it was the actual disease that caused dry mouth ?

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I suffer badly from a dry mouth, nose and eyes. A few years back I was tested for Sjorgens but it wasn't that. I was told it was called Sicca Syndrome which is very like Sjorgens but milder. I wake up in the night completely dried out and have to keep getting up to refill my glass of water that I have by the side of my bed. I was once put on Amytriptilene and that made things even worse, I was drinking almost non stop and yet couldn't pass any water at all. I think the fact that I have sleep apneoa and have to wear a CPAP machine at night makes it worse for being dry.

My dry eyes are also very uncomfortable and feel as if they are full of grit. I have to use three different kinds of eye drops and keep putting them in.

I hope you can get some answers to this.

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I too am a RA sufferer and have severe sjrogrens syndrome. It’s so bad my cornea perforated from being so dry even after numerous drops/ointment daily. Apparently my cornea was so thin from the dryness which caused it. I had to have immediate surgery to “glue” the cornea back together but it’s left me with scar tissue on it and now can’t see properly. My other eye is extremely thin too so just hope to God that it doesn’t go the same as I will be in big trouble. I may need a cornea transplant which is horrifying to me. So please anyone reading this with dry eyes please don’t take it lightly and have them checked often 😢

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That is awful to hear and I am so sorry for you Chester. Most people have no idea of just what dreadful things RA can cause. I went completely deaf in one ear just over ten years ago from the nerve in my ear being suddenly being attacked by my immune system. It is horrible as I can't tell what direction a sound is coming from or hear people if they talk behind me. Until it happened to me, I had no idea that RA could do that. For a person like me who is musical and liked to play the piano, guitar and various other instruments it has been rotten as I don't get the same enjoyment from music as I used to and I have lost all my stereo hearing as everything now sounds flat. As I am writing this to you now, my eyes feel full of grit, so I will have to put more eye drops in for about the fifth time today.

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Boots dry mouth spray,tastes better than most

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I have Secondary Sjogren's. Also had a Cornea transplant which failed. Im blind in my left eye because of Cataracts. But they won't operate as that eye is too fragile.

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That is frightening as I have eyes like that and have recently been told that I have cataracts growing in both eyes. I am frightened that might happen to me.

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I always advice those with SS to visit the British Sjogren's Syndrome Association website. bssa.uk.net/ I'm a member and it is so helpful.

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Thank you so much for sharing the website. I am really struggling with SS and all its symptoms and everything else.

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Well..I have secondary sjorgens syndrome. It first started in my eye and now I have in my mouth as well. I use an alcohol free mouth wash and truly helps. I don't know if you have anything like that in your country. I also don't do caffeine since it can make the condition worse. In addition, I am on prescription eye drops and steroids for eye inflamation.

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Thank you all for the excellent advice.

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