dry mouth

[Shaza123]

hi,just wondering if anyone else suffers with a dry mouth when taking pred .

[PMRpro Ambassador]

It may not be the pred - it may be part of the PMR symptoms, something called sicca (dry) syndrome or even Sjoegrens which is an autoimmune condition in its own right.

[DorsetLady PMRGCAuk volunteer]

It is listed in the Patient Information Leaflet as a side effect...

Have a look at this from NHS -

nhs.uk/conditions/dry-mouth/

[MrsNails]

I have a good mouth wash - l’ll get the name for you & add it to this post later…..

[Shaza123 in reply to MrsNails]

thank you👍

[MrsNails in reply to Shaza123]

Sorry for the delay - the Mouthwash is called biotène & you can buy it at the Chemist or on Amazon.

Photo

[Shaza123 in reply to MrsNails]

thank you Mrs nails 👍

[MrsNails in reply to Shaza123]

It’s very pleasant……

[Bluey-1 in reply to MrsNails]

I had a dry mouth when I had active Oral Lichen Planus. I used Biotene Mouthwash which is pleasant as you say. I also use Biotene toothpaste and used to use Sallivix pastilles. I haven’t suffered with dry mouth as much with GCA.

[MrsNails in reply to Bluey-1]

l was wondering about the Biotene Toothpaste, l might give it a whirl next time.

Glad it’s not been as troublesome with your GCA.

[Bluey-1 in reply to MrsNails]

The Oral Lichen Planus has been quiet, maybe overruled by the GCA. It’s weird how the GCA manifests do differently for everyone. My struggle is working out what are steroid effects and what is the GCA. A mystery puzzle that we’re trying to work out.

[MrsNails in reply to Bluey-1]

Like when we’re tapering the Pred - we’re not sure what’s causing what - maybe it’s something new or just old War Wounds playing up?

It keeps us on our toes!

[Bluey-1 in reply to MrsNails]

Just a thought. I still use Biotene toothpaste but as I build up a lot of plaque due to Oral Lichen Planus, I see the dental hygienist regularly and she advised using Sensodyne toothpaste once a day if I can. Biotene is very gentle so I have to use Sensodyne which to fend off the plaque…the joys of autoimmune diseases.

[SheffieldJane]

I have an increasingly dry mouth coupled with thirst. I am prescribed Salivix dry mouth pastilles that suit me. It is worth having them on prescription because they are about £9.00 to buy.

[Shaza123 in reply to SheffieldJane]

thank you for your reply. This PMR is horrible it came on like a bolt out of the blue I hate the way my face and neck have ballooned with the steroids I look so different and also weigh more I hate it. Has anyone else got these big cheeks 😱

[PMRpro Ambassador in reply to Shaza123]

Lots of hamster cheeks around yes! But you can help by cutting carbs drastically, especially processed carbs and added sugar, even limiting fruit. It is possible to avoid pred weight gain. The weight loss will reduce the chubby cheeks but most people have some fat deposits there

[Shaza123 in reply to PMRpro]

thank you for your reply👍

[SheffieldJane in reply to Shaza123]

Yes, I got the moon face. It does improve as you gradually lower your steroid dose. There is an exercise you can do for the chin-line. It involves, pouting and simultaneously pressing your tongue against the roof of your mouth. I think that it is helping. X

[Maltesemama in reply to SheffieldJane]

I bought a darker shade of blush

[Esradral in reply to Shaza123]

Big cheeks, big head, huge body ! The steroids have transformed me into a person I do not recognise but I'm hoping it will all disappear once I get to a very low dose or hopefully off them all together... fingers crossed. I have reduced to 9.1/2mg from 15mg but will stop here for a while as I have started having trouble getting out of bed ... physically ... and that's with an adjustable bed raising the back right up, I'd be lost without this bed they are brilliant. I have reduced my carbs and sugar but obviously not enough as there is no significant change in my weight. I don't look anything like my passport photo, good job I'm not going on hols 😂

[DorsetLady PMRGCAuk volunteer in reply to Esradral]

Does anybody really look like their passport photo ? Especially as you get towards the 10 year mark…😳

[Maltesemama in reply to Esradral]

my daughter says my pred pumpkin face fills in wrinkles! Trying to look on the bright side! 🤪

[Shaza123 in reply to Maltesemama]

bless her 🤣🤣

[Shaza123 in reply to Esradral]

I feel your pain Esradral it’s hard to get my head around all this PMR stuff I’ve read so much about it. I hope I get a good rheumy as I’ve read some aren’t that helpful.

[Nagswoman]

Yes and dry eyes.

[Shaza123 in reply to Nagswoman]

it’s horrible it gets dryer the more I talk

[Broseley]

I didn't notice a dry mouth but I did have a very sore throat when on a high dose of pred for GCA. GP sent me to ENT where they found nothing wrong. 8 months later and it disappeared as I reached a lower dose, so it must have been down to the pred.

[Shaza123 in reply to Broseley]

I feel so lucky I can read how others are coping and what their issues are I don’t feel so on my own with it now. Thanks everyone

[Greytree]

xylitol lozenges or xylitol chewing gum or brushing teeth with baking soda have stopped my dry mouth. I can’t chew gum so stick to occasional lozenges. Mainly it’s the baking soda doing the trick. I use a dab of toothpaste and dab of baking soda together. My dentist told me about this.

[Maltesemama in reply to Greytree]

I’ll try that! Thanks for sharing

[Bfp1]

hi - I do too - it’s awful - most days my mouth and throat are so dry they stick together and I can’t speak without water. Sorry to hear you have the same xx

[Shaza123 in reply to Bfp1]

it makes me anxious when I’m out with friends as I feel like I can’t swallow just have no moisture in my mouth at all. I started with my teeth being very sensitive a few weeks ago and can’t understand it

[Meggsy in reply to Shaza123]

I had sensitive teeth when on higher doses of pred. Seems to be ok now that I am on a low dose. Sensodyne toothpaste helped.

[S4ndy]

I do! Dry eyes too. My medics think it's to do with the drugs I am on but as I take a few different things hard to tell what one but Pred and Amitriptyline might be the culprits.

[Shaza123 in reply to S4ndy]

I’m on both of those,the Amitriptyline at night to help me sleep

[Bfp1 in reply to Shaza123]

also on the same - I always carry a tiny bottle of water on me wherever I am as then I can sip and speak. Otherwise I think I look ridiculous and my partner says I look like a thirsty Leopard. It’s awful xxx

[Bfp1 in reply to Shaza123]

on both also

[Maltesemama]

hi! Oh yes, dry mouth is very common. Water with me everywhere I go. Since it’s good for us, I don’t mind. Keep some hard candy in your pocket will help. Good luck!

[Shaza123 in reply to Maltesemama]

isn’t it strange how medication can cause so many other problems.

[micpenn222 in reply to Shaza123]

And Prednisone causes more side effects than many others...at least for me, anyway.

[Greytree]

Baking soda and xylitol are 2 (cordless toothbrush not needed) highly recommended to me. But there are other suggestions here, also. Biotène is good, per the posts here, because it has xylitol.

Dental community list in US on dry mouth.

[phebamom]

Not from pred, but BP/heart med Carvidolol is the most awful med I have ever taken, Dry mouth, vertigo, dizziness, etc.

[Harrigan]

I had a dry mouth my dentist sent me to the hospital for some tests but they found nothing wrong said it was the pills

[Shaza123]

has anyone else had swollen legs ,ankles and feet. I was on a bus trip and after four hours my feet were so swollen and today nearly 24 hours later my ankle and feet are still swollen

[PMRpro Ambassador in reply to Shaza123]

You would be much better posting this as a new thread - only a few of us who follow every thread will see this addition to an existing thread (DorsetLady and me really)

[Shaza123 in reply to PMRpro]

thank you