How long did this side effect last?

I would like to hear from anyone who developed tongue sores after going on Imbruvica. I began taking it Dec. 19 of last year. After initial joint pains vanished (thanks in part to my vegan diet), I recently got painful tongue sores. I don't need advice about treatment, my oncologist and I are doing all the right things, prescription mouthwash, cut dosage from470 to 280, etc).

I would like to know if you had tongue sores, HOW LONG DID IT TAKE UNTIL THEY DISAPPEARED? I know everyone is different but would still appreciate hearing from those with this specific side effect.

Thanks very much.

[Hidden]

i started jan 10 2019. Mine come and go. then come back a couple weeks later.

[Hidden in reply to Hidden]

That’s depressing. I hate living with these tongue sores. Thanks for the reply.

[Bsv39]

I’ve been taking Imbruvica for 5 months. I get sores in my mouth and lips quite often. And my lips are always dry.

[Hidden in reply to Bsv39]

Ugh. I’m hoping cutting the dose in half alleviates the tongue sores. Thanks for your reply.

[starsafta]

Two drops of Organic Oil of Oregano in an olive oil base, dropped on the toothpaste squeezed onto your toothbrush, will heal existing mouth sores and prevent new ones. Oregano has antimicrobial properties, and as a food, it is the best thing to use in your mouth. It is strong, so don't use more than 2 drops, and don't use it without the toothpaste. It dances on the tongue, which settles down pretty quickly once you spit it out.

My mouth sores started a few months into Ibrutinib. I've been using the Oil of Oregano daily for over 3 years. The only time a mouth sore developed was a few months ago, when I tried not using it. A sore developed within a few days. I continue to use it religiously.

[ElMaga in reply to starsafta]

Can u explain the concoction? Olive oil base? You tether said squeezed so I was thrown as it sounds like the mix is a liquid help

[ElMaga in reply to ElMaga]

Meant then not tether

[starsafta in reply to ElMaga]

You can find organic Oil of Oregano online. It’s a liquid and comes with a dropper, so it’s easy to control how many drops you use.

Squeeze your toothpaste onto your toothbrush. Then squeeze two drops of Oregano oil on top. Brush as usual. I swish the mixture around, similar to a mouthwash, before spitting out, to make sure it gets to the gums and inside cheeks.

It’s an effective prevention measure to avoid mouth sores. Good luck.

[ElMaga in reply to starsafta]

This was such a wonderful recommendation. I brush regularly with the oil of oregano with success

[starsafta in reply to ElMaga]

Glad it helped. We are here for each other.

[annmcgowan]

Hi I have been on ibrutinib for 1 year and get a swollen tongue and sore bumps on the sides of my tongue. They are intermittent and short lived using difflam products to treat and now trying Gengigel products to prevent. I have not needed to reduced my dosage to date.

Good luck

Ann

[Hidden in reply to annmcgowan]

Ann, Yes! Sore bumps on side of tongue is exactly what I have! Oncologist just lowered Imbrutinib dosage to 280mg and prescribed Dexamethasone. Hopefully they do the trick because I can’t imagine months of dealing with this, much less a year as you mentioned.

[annmcgowan in reply to Hidden]

Hopefully that will do the trick for you. Let us know how you get on.

Good luck

Ann

[BeckyLUSA]

I have had them twice in the 20 months I have been on Ibrutinib. Using magic mouthwash they went away. In about 2 days.

BeckyL USA

[Hidden in reply to BeckyLUSA]

I’ll ask my oncologist if I should switch from Dexamthasone to MM. Thanks.

[lorna222]

I just use salt. I take a teaspoon or so after I brush my teeth and use it as a rinse and make sure I don't eat anything so the salt water can do its thing. Do it at night as well. Had a few ugly ones a few days ago and after a day and a half of this routine - all gone Baking soad also in warm water calms everything down takes the sting away.

Hope this helps- that's painful.

Lorna