Ouch MOUTH SORES

[Mellowbubble]

I am on my second month of Ibrutinib , it started of great until this week I noticed how dry everything feels. My eyes and noses are really dry . But the worst are the mouth sores that have started. Blisters on my touché and lips. I have amped up Vitamin B , lysine and folic acid but it doesn’t seem to be helping. Has anyone had this and found something that works.

[Cllcanada Top Poster CURE Hero]

Quite common get into your GP and get a diagnosis, before it gets worse, could be viral reactivation one of the herpes strains, or thrush like Candida yeast infection etc...

~chris 🇨🇦

[cajunjeff]

Sorry you are having these problems. I have some transient mouth sores with ibrutinib, but mine have not been that bothersome. I use biotene mouthwash, it’s better for dry mouth because it’s not alcohol based..

You should tell your doctor about your sysmptoms. Dry eyes can be caused by an auto immune disorder called Sjögren’s syndrome. Cll patients are more at risk forautoimmune issues, but I’m not sure if there is a connection with Sjogrens. I know some folks with Cll report dry eyes and they are not taking ibrutinb, so it might not be the medicine.

I doubt your dry eyes are caused by Sjogrens, but if it’s really bothersome for you, be sure to let your doctor know so it can be ruled out. It’s very treatable. Whatever is causing your symptoms, I hope it clears up. Sometimes the doctor may interrupt your ibrutinib to see if symptoms go away. If it appears Ibrutinib related, your doctor can try reducing your dose.

[Newdawn Administrator in reply to cajunjeff]

There’s is an increased risk of developing a Non Hodgkin Lymphoma (of which CLL is one) with Sjogren Syndrome. By age 80, it’s been calculated at a 8% greater risk for men and approx 5.4% for females.

I’m believed to be a classic case because my SS developed well before the CLL with severe dry eye and joint pain. It was actually the dry eyes which first took me to the GP. However the link wasn’t made.

Some of the side effects of Ibrutinib treatment appear to mimic Sjogrens but of course aren’t the auto-immune condition. That would require a blood test, lip biopsy and/or tests with a Consultant Ophthalmic surgeon.

It’s very hard to definitively diagnose and eventually two Ophthalmic Surgeons, the haematologist and a maxillofacial surgeon told me I was a classic case. Joy of joys! 😏

My eyes have become slightly drier since starting Ibrutinib but I have to hope the mouth ulcers don’t develop.

When I was in the Day Unit receiving IVIG, I noticed some of the chemotherapy patients being given prescribed meds for mouth ulcers and mouth conditions so it’s worth asking the specialist.

Best wishes,

Newdawn

[W00dfin]

I keep a prescription “magic mouthwash” on hand for mouth sores. It both numbs and promotes faster healing.

[Hoffy]

I have found that oregano oil on your toothbrush just one drop works well to get rid of mouth sores. I rinse off The brush before brushing because it can be very strong but play around with it.

It worked very well for me .

Be well,

Hoffy

[-Sparky- in reply to Hoffy]

I have not had ibrutinib only rituxin & bendamustine and that was a year and a half ago. I have had my sores on my tongue for about 4 months and I used oil of oregano for one week twice a day. It caused the sores to burn but did nothing to alleviate the sores.

I have not tried the miracle mouthwash because of the numbness I understand it causes and thus it is easy to bite your tongue and cause further pain and damage.

I do use a mouthwash of 1.5% hydrogen peroxide twice a day. I hope that it is keeping the sores in check.

[Hoffy]

Not sure with BR.

Oil of oregano worked well with Imbruvica.

Be well,

Hoffy