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CLL Support Association
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Ibrutinib and mouth sores anyone?

I have been on Ibrutinib for almost 3 months and being treated for painful mouth sores. Anyone experienced this? It’s been almost 3 weeks and taking antibiotic 200MG Diflucan for 7 days.

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That's an antifungal... Fluconazole. It could have a serious interaction with ibrutinib.

fluconazole increases levels of ibrutinib by affecting hepatic/intestinal enzyme CYP3A4 metabolism. Avoid or Use Alternate Drug. Avoid coadministration of ibrutinib with moderate CYP3A inhibitors and consider alternative agents with less CYP3A inhibition; if unable to avoid, decrease ibrutinib dose to 140 mg/day.

reference.medscape.com/drug...

Also see..

drugs.com/interactions-chec...

It need to be approved by your CLL doctor, as do all prescriptions and supplements.

If you have a 24-hour call in number use it...

~chris

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Thanks Chris. I have a call in. Waiting for a call back.

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Good... I'm glad...

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Try dripping a couple drops of Natural Factors Organic Oil of Oregano on your toothpaste when you brush your teeth, then swish it around like a mouthwash instead of rinsing with water. No deleterious side effects. It healed the mouth sores I had, and has prevented them ever since. I am vigilant about this, at least twice a day. Hope it helps you as well.

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Thanks stars Agra. Will give it a try.

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I use baking soda on my toothbrush, along with toothpaste an that seems to do the trick. I also add a drop of clove oil as well

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On flair trial ibrutinib + venetoclax. Had bad mouth ulcers docs tell me due to low neutrophils, now injecting filgrastim 300 micro grams twice weekly & problem has gone away thank goodness

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Hi initially I had mouth sores on Ibrutinib and rituximab. I used corsidyl mouth wash as recommend by hospital as and when need and this helped. 3 months in they have gone now.

Good luck.

Ann

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Ohhh yes!!! Tell me about it!! I started Ibrutinib at the beginning of January. About 6 weeks in, I started getting seriously painful sores in my mouth. To cut a long story short - I ended up with grade 3 Mucositis, and had lost over half a stone through being unable to eat properly. The hospital had given me Difflam mouth wash, which took the pain away to start with, I then progressed to GelClair and eventually Morphine, at which point I got oral Thrush on top of the Mucosotis. I had to stop the Ibrutinib for a few days, and incredibly the mouth cleared up completely in 3 days. I was then restarted on 2 instead of 3 tablets a day. That went fine until about 10 days ago, when the same type of symptoms reappeared, only 'different'. I look like I have the most horrendous case of Gingivitis - my gums are just so sore it's ridiculous - plus about half of the roof of my mouth is covered in sores, two of which have large white patches in them.

I'm using the Difflam again - which stops the pain and lets me eat small amounts, BUT having stopped the Ibrutinib on Thursday, nothing has improved, so I'm ditching it in favour of the GelClair today. My consultant has told me to stop the Ibrutinib for a week this time, then restart Ibrutinib on just one tablet a day, and they want to see me agin a week after that.

I was told that because it's a drug reaction ABs and AFs are redundant. I was the the first patient my consultant ( a world authority on CLL) had come across with this reaction. It's possible that your docs haven't seen it before either in which case they may not realise that it's because of the Ibrutinib. Go back to them and see what they say.

Whatever you do, don't stop the Ibrutinib without their say-so though!

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I started on ibrutinib in early 2014 and had horrible mouth sores within six months. Consults with the principle investigator and my hemoc led to the following:

* brutinib is known as a virus activator. The mouth sores are a virus called cocksackie. This occurred with some patients firing the clinical trials.

* Most effective treatment was infusions of gamma globulin. After a half dozen infusions, supplemented by special mouth wash and other treatments, the sores disappeared. Took a few weeks.

* Check with your doc and have him reach out to Dr. John Byrd at Ohio State about this.

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Yep! 21 mo on ibrutinib. Mouth sores didn’t start until the last year. Tried lots of things, but finally found that 1,000 mg valcyclovir & gargle with salt water twice a day keeps sores in check. They’re still there, but pain is 1-2 out of 10 instead 6-7 out of 10. Tried stopping valcyclovir hoping the salt water would do the trick, but sores came raging back within a week. Still on 420 mg. Good luck!!

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My awful Ibrutinib mouth ulcers responded to a mouthwash called Gengigel and I can't recommend it highly enough. Expensive but very effective for me.

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My husband is taking ibrutinib and has mouth sores, which come and go. The doctor prescribed acyclovir but my husband is resistant in taking it because he says he has always had mouth sores. I just added a new post this morning what the nurse told us about toothpaste & SLS.

We'll see if that is his problem; however, developing mouth sores on ibrutinib seems to be common so it may not be the solution.

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I have them after 3 months...almost like a mouth ulcer

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Oregano oil solved the mouth sore issue for me. Put a drop your tooth brush but rinse it off a bit be before brushing. It is very strong but solve the issue for me.

Be well,

Hoffy

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My husband started developing sores and they took him off ibrutinub for a bit and then started him on the dukes magic mouthwash. As he’s gone back on it, so far he’s good

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Magic mouthwash works for me 🌞

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My husband has had very painful canker sores and mouth sores....He switched to Squiggle Toothpaste ( online purchase) and canker patches purchased from the pharmacy over the counter helped. Magic mouthwash helped as well.......he gargles with salt water as well.....reduces his intake of citrus fruits and juices as well. ( We are in the US as well.)

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Been on Ibrutinib for3 months now for Critical Lymphocytic Leukemia. Have had blood blisters inside mouth - cheeks. If they're close to the front I lance them and put peroxide on them. Gone within a couple of days.

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