CLL Support Association
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Mouth sores on Imbruvica

Is anyone else experiencing mouth sores while taking Imbruvica, and if so, are there any working solutions out there? I’ve been on the medication for five months. The mouth sores have just surfaced with a vengeance. Other than that, I’ve only experienced diahhrea (Imodium helps), brittle and breaking nails and a bit of hair thinning, so nothing major.

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I had some mouth sores early on with ibrutinib that were not too bad. Try biotene mouthwash if you are not currently using it. It is not alcohol based and I find it very soothing.

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Hi my specialist prescribed Gelclair for my mouth ulcers on Ibrutinib it helped.

Good luck

Ann

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I did not see mouth sores as s side effect. Have u seen a dermatologist? for brittle nails use a 5 min olive oil daily soak

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Thanks much!!!

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You are welcome. Maybe stay away from acidic fruits for a while

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I was prescribed prescription mouthwash, but found that the best treatment for mouth sores for me is a baking soda/water rinse every day.

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Thanks, I’ll try that also. They can be miserable!!!

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I mix baking soda and Xylitol with water and rinse with that. My mouth was so dry that the inside of my mouth would stick to my teeth, and Xylitol helps with that.

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I had the mouth sores and still have the brittle/thinning/cracking/bleeding nails. The mouth sores responded to Baking Soda rinse (sparingly). After a while I was able to stop the Baking Soda, and the sores didn't come back. The nails are responding to the Biotin, but they take a long time to regrow. Start with whatever dose the Dr recommends. A side effect of the Biotin is that I am also regrowing a little bit of fuzz on my head.

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So much appreciated!

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I use baking soda rinse after every meal. It doesn’t totally get rid of them, but they are much better. I also find the mouthwash for dry mouth soothing. I use spry tablets at night. They last for about six hours.

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What are spry tablets?

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could you tell what are spry tablets and where do you get them .........Thank you so much

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Spry tablets have xylitol in them. They are made to use at night for dry mouth. You tuck them between your gums and cheek. They have a side that is kind of adhesive so they stay in place. They really help dry mouth and seem to soothe the sore mouth. I buy them on line from amazon, but other people have found them at their local pharmacy.

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How’s it working on your WBC ? Hope it works wells for you!

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Yes - my mouth sores are helped by taking an anti viral which my doctor has me on permanently. I don’t have a solution for brittle nails - biotin has not helped me but has helped others.

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Hi, I couldn't help but notice your name. Are you in California? Which part? I'm looking for a CLL specialist in southern California. Any recommendations would be appreciated!

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I actually go to Mayo in Scottsdale, AZ Dr. Jose Leis. Their patient care model is worth traveling for to me.

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Thanks SunnyCA - best wishes for a safe journey!

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Warm water and salt is soothing...gargle and rinse as needed.

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I’ve been on Imbruvica just shy of 3 weeks and have had mouth sores start up about a week ago.

I am trying to avoid mint due to other reasons, so for me, biotene isn’t a good fit, though it was recommended for dry mouth. Baking soda rinses also we’re recommended.

I have gotten some improvement with warn salt water rinses.

My understanding is both the salt rinses and baking soda rinses change the pH levels in the mouth.

I am also waiting to hear back from the dentist regarding non-mint non-alcohol mouth rinses.

They Rn did call in a rx “magic mouthwash blm suspension” but right now the salt water rinses and over the counter oral pain relieving gels have helped enough that I’m holding off on that for a back up if they worsen.

I recall in the past for sore throats coating the mouth and throat with mylanta or milk of magnesia.

I was told to avoid acidic and spicy foods, as well as any mouth rinse with alcohol. Remember to drink lots of fluids to stay hydrated.

I was also told if the sores persist or worsen, they may need to reduce the dosage or take me off for a short time and restart.

I hope you are able to get relief.

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I’ve been on ibrutinib six months, tried all sorts of natural remedies without much success. What is working best for me now with the current sores is Listerine sensitivity twice a day.

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I've been on Ibrutinib for 18 months and have only experienced brittle and chipping nails. I've also developed insomnia...not sure if that's a result of IB. I'm going to try treating my nails with olive oil...thanks for the tip.

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Hi Survivor1951,

I had nasty mouth sores for a few months after starting Ibrutinib. Like some others here, warm salty water mouthwashes (several times a day), seemed to help.

The mouthwash prescribed by the doctor didn't do much for me - just made my whole mouth sting. Different things seem to work for different people, but the salt solution was something easy I could make at home. I used half a teaspoon of salt in a mug of water, but I think some people make it stronger.

Hair thinning is another thing, and sadly I've found no remedy for that. Well I am 70 now so maybe it's partly the aging process... :-(

Mouth sores can be very painful so I do hope you find a solution for yours soon..

Wishing you well,

Paula

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Rinse 2x/day with baking soda in water.

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Hi, yes I started Ibrutinib almost 5 weeks ago and my mouth ulcers started just before the four week period. I discussed it over the phone with my team and they suggested using a baby’s toothbrush and rinsing regularly with Corsodyl mouthwash. This seems to have lessened things slightly. I also have a strange taste in my mouth most of the time. Hope you find a remedy. I think I might start the salt water mouthwashes as others have done.

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Been taking Ibrutinib for 26 months and been on daily valcyclovir about a year for mouth sores (it’s the only thing that works for me). If a really bad/persistent sore pops up, I take 2 valcyclovir daily for 3-4 days until it’s gone. Good luck! - Jollie

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Good medicinal quality Manuka honey helps me. It is expensive but well worth it.

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My husband has been on Imbruvica since April and just recently started develooomg mouth sores. They prescribed him Magic Mouthwash and it seems to help.

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At about 8 months on Ibrutinib and 4 with Venetoclax, I developed the dreaded mouth sores. After reading other posts on here, when I developed the them, I decided not to wait. I immediately called my doctor and he prescribed the Magic Mouthwash. For me, It started working immediately. I took it for about 3 days and they were gone. My total time with them was about 4 days. And have not had them since. For me, at least, it worked like “magic”. I do however take acyclovir twice daily because I have had shingles.

BeckyL USA

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My husband has had mouth sores, blood blisters in his mouth. He has been on Imbruvica for 4 months. Salt water rinses 2-3 times a day takes them away fast

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I have been on Imbruvica for 4 years now...blood tests normal except low platelets. I do get mouth sores..blood blisters that only last 24 hours. But sometimes, they will pop during the night and bleed out on my pillow. I do have the brittle finger nails as well.

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Dripping 2 drops of Organic Oil of Oregano on your toothpaste before brushing teeth will quickly heal any existing mouth sores and prevent new ones. After brushing, I swish any liquid left in my mouth around like a mouthwash, and do not rinse with water or anything else. I also use an organic toothpaste. I've been doing this for over two years on Imbruvica, preferring using a "food" to some processed mix, with excellent results. When I got lax for a few days, mouth sores developed, which makes it easy to simply consider this part of my oral health routine and just do it. This is one Imbruvica side effect that is easy to keep at bay.

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Worked for me too. I rinse off the brush with it on since it is soo strong,

Hoffy

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I know. Oil of Oregano dances on the tongue, and I suck in cool air to cool it down, just as I do when I eat Vindaloo. It's a combination of pain and pleasure that I find exhilarating. Gotta live on the edge sometimes and remind myself that I'm alive in every cell.

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i started on imbruvica in early 2014 and developed mouth sores within six months. extremely painful --i wasn't able to eat or talk. lost a lot of weight while my docs (2 hemocs and an oral surgeon) figured out why. it turns out that imbruvica triggers virus activation, and my mouth sores were from cocksakie virus (foot and mouth disease). given my damaged immune system--i've already had 11 cycles of traditional chemo (PCR and BR) the docs concluded that infusions of gamma globulin would get rid of the virus. it took a few weeks but the 8 infusions knocked out the virus.

so if your mouth sores persist ask your hemoc about getting GG infusions. Also, your hemoc should be in touch with dr. john byrd at ohio state university. he was the principle investigator on imbruvica and knows more about side effects, including mouth sores, than anyone.

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Very interesting. Thank you very much!

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I've had a few mouth sores for which swishing with salt water has helped. I have chronic diarrhea from the ibrutinib, and also have thin-splitting nails and I shed hair daily. I started taking biotin supplements to help with nails & hair issues. I also have chronic muscle and joint pain from the ibrutinib for which I use a combo of Tylenol, oxycodone and, marijuana. It all is quite tolerable considering the alternatives. I hope this helps with your query.

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