Anyone suffer dry/burning mouth particularly interested if you take Xeljanz.

This started about March with dry mouth before extending to burning mouth over the past 6 weeks. It effects all my mouth including tongue, gums and throat. I'm also getting ulcers on both sides of my tongue.

When it's bad it makes my whole head hurt and my tongue and throat feel swollen. Eating offers some relief but I'm fat enough without doing that all day. It's not as bad in the morning and awful in the evening.

I'm not on any other drugs apart from paracetamol and thyroxine. It's so sore and is really getting me down. I've had blood tests done which all came back normal apart from slightly raised liver readings. Spoken to gp who prescribed artificial saliva spray and drops for oral thrush. Neither has helped. Rheumatology nurse advises use the spray, take vitamin supplements and sip water.

Has anyone else suffered this please? I'm seriously considering stopping my Xeljanz in case it's a side effect as it's one I just don't want to accept.

Also, due to Covid nobody has actually looked at my mouth or examined me.

[Mickymoo]

I had the same thing happen. All inside my mouth and tongue were beaming bright red. Very dry also. It was stingy and painfull to eat. Googled a few things and came across a possibility that is was my toothpaste. Apparently you can use the same toothpaste for years and then all of a sudden it can cause a reaction. I thought it sounded daft but i was desperate and nothing i bought worked to clear it. I stopped using the toothpaste and it completely went away within a couple of days. Used antihistamines also for the stingy feeling and it helped. Worth a try! X

[Hidden in reply to Mickymoo]

Thanks Mickymoo, it's worth looking at. I'll see if there's any sort of additive free toothpaste to try. What do you use instead?

[Mickymoo in reply to Hidden]

I was using colgate " max strength " for a long time. Wouldn't have known about toothpaste being one of the reasons for the irritation until i saw it on Google. Started using ordinary Colgate and took some antihistamines for the stingy red pain and within 2 days it was gone! I recently started using the stronger one agaon and so far so good. Once the redness starts ile go off it again. This has happened a few times now so im sure it was (in my case) the toothpaste. I would try antihistamines too for now, see ifvit helps the rawness at least x

[Hidden in reply to Mickymoo]

Thanks, I started antihistamines yesterday. Now you mention it this all kicked off after I started using Listerine Total mouthwash for tooth pain. I stopped using it ages ago but maybe there's a link. Mouth pain is just horrible. Glad you got yours sorted.

[HanaleiBa in reply to Mickymoo]

My grandmother and then I use baking soda and water. It works, but doesn’t make toothpaste companies money :). Also, there are tons of additive free brands - try places like Holland and Barrett, natural food stores or Amazon.

[Mmrr]

I had awful mouth problems whilst on baricitinib, changed to toficitinib (xeljanz) and things improved mouth wise.

But probably worth giving the toothpaste a go first.

[Hidden in reply to Mmrr]

Hi, yes I'm going to get some natural toothpaste to try. These drugs effect us all so differently. I spoke to my nurse and she said it's not listed in side effects but we all know that doesn't rule it out. There's limited data for Xeljanz with it being relatively new. I remember being told methotrexate wouldn't be to blame for my hair loss but that cleared up when I came off it.

[Mmrr in reply to Hidden]

My mouth problems all began with methotrexate, I'm now off it 18 plus months and still have some minor problems.

I hope the toothpaste works out for you.

[Angels54]

Hi I have just started injecting Orencia and getting a sore tongue and mouth, it’s obviously a side affect , I think you need to get it sorted and not leave it, sometimes pharmacy can give you advice about drug, get it checked out, could even take photo of mouth so you can see if it improves taking different meds.

Good luck

[Hidden in reply to Angels54]

Hi, I hope yours settles down soon. I did the e-consult and a Dr is going to call me back on 7th September. It really is hard to get treatment now! I know in the scheme of things mouth pain doesn't feature high as a priority but it really is making life grim. I've been reading up on burning mouth syndrome and it sounds like that. I'm being careful what I eat now and keeping a food diary to see if there are any trigger foods. I've also read stress and depression can be a trigger and this year has certainly been stressful and depressing.

I lost my Dad in February. 2 weeks later my Mum fell over and had to go into a nursing home. Add to that the strain were all feeling with covid and shielding and missing our children at such a difficult time and yes I'd say stress could be playing a part. I don't just want palming off with anti depressants though as an easy option.

[mille]

I suffered from a burning tongue and it was so painful, it turned out I was short of B12. I now have to get injections every three months. I also suffered from cuts/cold sores on corners of mouth. It's better now with the injections. If you still suffering it might be worth getting blood checked for b12. x

[Hidden in reply to mille]

Thanks for sharing this Mille. Glad that you were able to get treatment. I've just had my b12 checked and it's all fine but thanks for mentioning. x

[mille]

That's good to hear..hope you are well x

[Jaxine]

Two months two late! However, I'm not on the same drugs as you, but dry mouth has been the bain of my life, literally so dry it can affect swallowing! I think a lot if RA drugs cause this, I heard that if you tend to breath through your mouth not your nose your mouth becomes very dry. I've started sucking on sugar free sweets, and breathing through my nose ( hard when also my drugs cause sinusitis) but it has helped. I got rather panicky when my mouth became dry and swallowing more difficult, I got rather paranoid! Its horrible when your brain make you overthink everything.

[Hidden in reply to Jaxine]

It's never to late to reply lol. Unfortunately the dry mouth lingers on as ra really is the gift which keeps on giving. Like you I've resorted to sugar free sweets. I also use lots of sugar free gum and Biotene products. I'm hopeful one day it'll just go away. Good luck with keeping on top of yours, it really is uncomfortable x