Dry Sore Mouth

[jaypax]

Greetings to All.

A quick question: I have been taking Ibrutinib for 4 weeks and had no major adverse side effects other than a very dry sore mouth. Has anyone else had the same problem? And any tips to alleviate this? Best wishes to all.

Jeff

[Hidden]

Hi Jeff

Are you keeping well hydrated.. many common side effects occur due to this reason, it’s not unusual to develop sores in your mouth while taking Ibrutinib but you can usually resolve this with a good mouth wash, it’s always good to keep any sores clean and free of bacteria to Prevent any infections.

It may be your experiencing a few adverse side effects which many develop in the early stages of taking this treatment but resolve over time.

It’s always essential to keep your specialist team informed of anything that’s concerning you.

Stuart

[jaypax in reply to Hidden]

Hi. Thanks for your reply. I am drinking more - a minimum of 6 pints (sorry, I don't do litres!) of water with fruit juice plus cups of tea or coffee, and using Corsodyl mouthwash. Hopefully it will ease over time as you say. Best wishes. Jeff

[migirlusa]

Hi Jeff - Stuart just gave you the best answer.

[jaypax in reply to migirlusa]

Hi. Thanks for your reply. Am keeping hydrated so hopefully the problem will ease soon. Best wishes. Jeff

[starsafta]

you might get some ideas if you click on a previous thread:

healthunlocked.com/cllsuppo...

[jaypax in reply to starsafta]

Thanks for posting the link. Interesting reading..... thank goodness my problem is more of an annoyance. No infections but aware that I may get one so am scrupupous about oral hygiene.

[kathymac52]

My husband does a salt water mouth wash daily to help with sores, drinks loads of clear fluids...

[TimHB]

Since starting ibrutinib six weeks ago I find I'm constantly thirsty which is good as a reminder to drink lots and LOTS of water. I'm drinking water constantly (which means I'm finding every public bathroom in Los Angeles!) So my mouth doesn't get very dry (and no sores so far) but a recent visit to my opthamologist discovered I have "dry eye syndrome" just like those silly TV commercials I thought were making up new diseases. He says this is a side effect of the CLL & ibrutinib.

[jaypax in reply to TimHB]

Thanks for your reply. I am taking on loads of water and like you I have a map in my mind of every toilet in the local towns! It doesn't help that I'm also on a diuretic! Best wishes.

[Hoffy]

For mouth Sores I find brushing my teeth with a drop of oregano oil helps make the sores go away. Only 1 drop and Rinse the tooth brush before using since it is very strong.

Your issue might be different.

Be well ,

Hoffy.

[jaypax]

Thanks. If the problem persists I'll try the oregano. Good tip. Best wishes.

[8700paul]

Hi Jaypax............. The symptoms you are describing sound a lot like Sjogrens syndrome.. Please check it out. Also I have had a dry mouth , before CLL and I use pilocarpine 5 mg every 6 hours ........ It is a prescribed drug that makes you salivate with no side effects ..Just some thoughts .....GOOD luck.........paul

[jaypax in reply to 8700paul]

Hi Paul. Thanks for your reply. I didn't think about Sjogrens…. and as a retired dentist I should have. I will have it checked out as you suggest. Many thanks & best wishes Jeff

[Newdawn Administrator in reply to jaypax]

I’d be surprised if Ibrutinib could actually bring on Sjogrens Syndrome in terms of it being an auto immune condition but it may create Sicca symptoms of dry eye and mouth without the auto immune component. But who knows?

I’m not on Ibrutinib but the SS is causing me dreadful problems including my tongue feeling like it’s welded to the top of my mouth every time I sleep. Horrible symptoms I can identify and sympathise with especially as I have the severe dry eyes and joints problems with it.

Regards,

Newdawn

[ken3015]

Hi Jeff

I am also entering my fourth week on imbruvica ,so far no side effects And my lymph

Nodes shrank dramatically.

As for dry sore mouth I was told to rinse with water and baking sofa and some salt.

I don’t have this problem but could develope.

Really look after your teeth and floss.

You will be ok.

Ken

[jaypax in reply to ken3015]

Thanks Ken. I have increased my fluid intake and found some pastilles which give some relief. The salt water mouthwash helps. Will try adding baking soda as well. Best wishes.