PMR & dry mouth

[David_H]

Hi, anyone know if there is a link between having PMR and a dry mouth? I seem to wake up in the morning with a very dry mouth. It's a lot better during the day but also get a sore sensation on tongue but there's no redness, ulcers, etc.

Thanks

[SheffieldJane]

I have the same symptom. My GP wasn't particularly interested but she prescribed a vile tasting mouth spray that works when I wake in the middle of the night with a sand paper mouth. The spray and mouthwash sold by Boots ( own brand) works just as well and tastes better.

It must be either PMR or Pred related, never had it before. I think the dryness causes the soreness too.

[piglette]

Hi David, I get it too. Usually OK in the day but my lips stick together and my tongue is like sandpaper when I wake up.

[PMRpro Ambassador]

Do you have any other dry "bits"? Dry eyes (leading to streaming thin tears) is not uncommon and some people have a dry mouth with PMR - I did for a time but it did go away with pred. However - Sjogren's syndrome is also an autoimmune condition and it causes dryness.

[David_H in reply to PMRpro]

Hi thanks for reply. Eyes are ok ta and any other dry skin ive had for ages hopefully it will go in time although i keep saying that about the pmr but 2.5 years later and im still saying it!

[David_H in reply to PMRpro]

Hi, oddly enough I did notice my eyes feeling sore when out in fresh air so it may be what you suggest. Is it common to have PMR with Sjogren's syndrome?

[PMRpro Ambassador in reply to David_H]

Dry eyes can be fairly common. You can also have sicca syndrome, which is the same symptoms as Sjogren's but no antibodies in the blood. But once you have once autoimmune disorder a second becomes more likely.

[Mrsd12f]

Hi. I have PMR and Sjögren's Syndrome and, as we know, these autoimmune conditions do like to go around in gangs! Although I'd probably had the Sjögrens for years, I was only diagnosed when they first did the bloods for PMR. I do have a very dry mouth at night and occasionally, a sore tongue. I can't say I'd suffered from the dry mouth until I was diagnosed and started on the Pred., so I suspect it's a combination, but probably won't know until I'm finally off the Pred.

I find Xylimelts helpful for the dry mouth; unfortunately, they're not on prescription in the UK, but there are various gels that are available, so it might be worth mentioning to your GP.

Hope this helps.

[David_H in reply to Mrsd12f]

Ah thanks very much for taking time to reply. It's good to know 'm in good company!

[morwe in reply to David_H]

Hi David

You might like to think about getting a blood test for diabetes so that you can rule that out as a possible cause.

[David_H in reply to morwe]

Thanks but had one of those as a routine in March

[Amkoffee in reply to Mrsd12f]

I have suffered from dry mouth for years and I've always assumed it's from the medication that I take but it has gotten overwhelmingly bad since I started prednisone and it's not the dryness that's gotten bad as much as my tongue has gotten excessively sensitive. My dentist insists I have burning tongue syndrome but I tell him that I do not have those symptoms. I've been tested for Sjogren's because I also suffer from dry eye syndrome. The blood test came back negative and I have not done the lip biopsy mostly because I think it's going to hurt and because I figured knowing doesn't help, I would just be treating symptoms anyway and that's what I'm already doing. I wondered if your tongue is extremely sensitive to food, because I have found that to be a real problem for me lately. I live in the US but I'm going to try and find the Xylimelt and I will give it a try.

[Mrsd12f in reply to Amkoffee]

Yes, I am a bit sensitive, especially to peppers and tomatoes and I also have a couple of allergies to perfume ingredients.

The Xylimelts are little tablets that stick to your gum and keep your mouth moist.

I get mine from a uk company called Mouth Ulcers UK, I'm sure if you google, you'll find them in the US.

[Amkoffee in reply to Mrsd12f]

I'm one step ahead of you. I did some googling as you suggested and found some on Amazon even but then I found some at my local drug store. I am about to try it for my first time this afternoon.

[Baileyw06 in reply to Amkoffee]

What did you find in the US for dry mouth?Mine just seems bad at night and when I wake up in the morning.

[David_H in reply to Amkoffee]

Hiya, no, not particularly sensitive to food, maybe tomatoes and acidic food items. More a feeling like you get when you burn your tongue.

[Amkoffee in reply to David_H]

That sounds like burning mouth syndrome. Has anyone mentioned that to you? You should Google it and see if you fit the criteria.

[David_H in reply to Amkoffee]

Thanks, I'll check it out

[camerashy]

Hi David

I have a similar problem...yes in the morning but sometimes when I go to speak, my tongue and mouth have dried up. doesn"t last too long but very disconcerting.

[David_H in reply to camerashy]

Yep its a bit of an odd one isnt it