Mouth Sores and Neuropathy : After four years on... - CLL Support

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Mouth Sores and Neuropathy

Bjhayes14 profile image
16 Replies

After four years on Ibrutinib I have developed mouth sores and neuropathy. I tried many lip creams, finally went to a dermatologist and got a steroid cream. Still having problems. Has anyone else had these problems?

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Bjhayes14 profile image
Bjhayes14
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16 Replies
GMa27 profile image
GMa27

Get prescription for magic mouthwash.

I also have on hand -Alum in spice area of store. I mix it with drop of water and place on sore with finger for 5 seconds. It is a horrible taste and stings but it works. Next day or two the sore is gone.

Bjhayes14 profile image
Bjhayes14 in reply toGMa27

What is magic mouthwash? Is that a brand?

Dom57 profile image
Dom57 in reply toBjhayes14

My dr has to call it in to the pharmacy and they mix it up. My has 4 different drugs and it works great. Have been on imbruvica for 2 years and have had to use it at different times. Good luck

GMa27 profile image
GMa27 in reply toDom57

Unfortunately it only has a shelf life of 2 weeks due to ingredients. That is why I keep Alum in house.

antonb profile image
antonb in reply toDom57

which ones ? let me guess .... lidocaine , mylanta (Naalox or some other brand of anti-acid ) diphenhydramine and maybe Nistatin ? you can mix the at home...if so

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toBjhayes14

Magic Mouthwash is a lidocaine based mouthwash which numbs the sores, mixed slightly differently with other ingredients depending on where you get it. I'm not sure what it is called outside of the US. Many find that rinsing with warm salt water or a mix of salt water and baking soda several times a day helps with mouth sores. On the upper right of this page you will see other posts about mouth sores under related posts.

annmcgowan profile image
annmcgowan

I use difflam mouth wash. It also numbs. You can get it in spray and sweets to suck. All are good but the mouth wash works best for me.

Ann

starsafta profile image
starsafta

Try dropping 2 drops of organic Oil of Oregano on your toothpaste on the toothbrush, twice a day. It's antimicrobial and has helped many get rid of mouth sores with natural ingredients.

Hoffy profile image
Hoffy in reply tostarsafta

Worked for me. Just one drop because it can be strong.

I ran water over it too.

Be well,

Hoffy

starsafta profile image
starsafta in reply toHoffy

I like the feeling of the oregano dancing on my tongue for a few seconds after spitting out the toothpaste. Helps me feel alive -- and that it's working. :-)

UkeDuke profile image
UkeDuke

I am in very early stages of CLL. W&W. Have developed neuropathy in hands and feet along with persistent joint and muscle pain and recently went to see my GP. He told me to take panadol for the pain just gave me hydrocortisone cream for the neuropathy. Didnt seem too concerned and wasnt convinced it was related to the CLL.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toUkeDuke

You might want to check with an orthopedist, if possibl, especially as you are still watch and wait. Orthopedic issues can also cause neuropathy.

Workers profile image
Workers

I have mouth ulcers ,very painful ,tried all sorts of things but nothing really works

winterwild profile image
winterwild

I use Manuka Honey, good quality and strong. Google properties and strengths.

MSUdawgMom profile image
MSUdawgMom

I have been on Imbruvica for over 4 years, and have suffered with mouth ulcers at intervals. My dentist told me to make sure I used a toothpaste that did NOT have sodium lauryl sulfate in it, as this could exacerbate the ulcers. I still have them occasionally but it is much better!

Gisygirl profile image
Gisygirl

I have had mouth sores ( like red blood blisters) that only last 24 hours. So I just leave them alone. They often turn white the next day and then disappear.

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