For some years I have experienced small blisters that pop up on the roof of my mouth.
These pop and either bleed or release clear fluid, when they pop the area becomes sore.
Anyone else experience this?
I am wondering if this could be Penphigus Vulgaris?
Any thoughts or advice welcome.
Thankyou for reading my post
This forum provides much information, support and comfort.
I had a similar problem for years, it was oral lichen planus. My friend who is a nurse practitioner went to a "Food as Medicine" Conference in Seattle with Dr. Weil and other physicians, and suggested I try a food elimination diet. I finally discovered it was an allergy to yogurt. You should see your physician to get a diagnosis, it could be something else, but try not eating dairy for three days and see if it improves in the meantime. It could be another food allergy causing lichen planus too. I had it for years, my dentist, dermatologist, and dr tried steroid injections special mouth washes, nothing worked. When I stopped eating yogurt for three days it went away. Now, years later when I was diagnosed with CLL, both oral herpes and oral lichen planus came back. After I started Imbruvica recently it got much worse. I take 1000 mgs Valcyclovir three times a day, it does help, but my mouth is still very sore even though I stopped the Imbruvica.
Thankyou for your advice, I will try your suggestions.I have mentioned it to my GP who had no idea what it could be, to be fair my mouth was clear when I saw her.
I hope your mouth soreness improves,
Best wishes to you
I agree that it could be food allergies. For me, it is too much acid, like oranges or tomato. My mom had it with pineapple as did another young man that I knew. I hope you find the problem.
I started my first treatment which is ibrutinib in January 2021 after about 30 months of watch and wait after diagnosis. For first few months I had continuous mouth sores in various places. However over the last two months I have had only a couple of them. Seem to be triggered by ibrutinib and certain food types in my case. Take care to rinse my mouth with water after eating and I use Difflam spray if they appear.
I have had problems with sores along the margin of the tongue and inside cheek for a year, finally diagnosed as oral lichen planus. Treated with steroid mouthwash which kept it reasonably under control but complicated things by causing oral thrush.Ora-Nurse, a toothpaste without any flavouring or other extra ingredients was recommended as ordinary toothpaste was v painful to use. After a course of oral steroids for another CLL problem sores settled and it is now almost gone, using solely ora-nurse.
You can only buy it on Amazon . A pack of 3 tubes lasts me at least or 4 months.
Charlie Girl
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I had these for a number of years prior to starting treatment with Ibrutinib over 3 years ago. They used to pop up randomly and astonishingly quickly. Not had them for some time now so I believe this is something connected to the very poor immune ability in the later stages of untreated CLL. Good luck.
Thankyou for your replies , I will change my toothpaste as I do find this often makes my mouth sore .
Interesting, I remember a few years ago I was told I probably had an auto immune disease but they couldn’t pinpoint what , it seems likely.
Appreciate your answers, wishing you all well.
When I began Imbruvica,, The hematologist nurse said mix 1 quart water with 1 teaspoon salt and one teaspoon baking soda. Rinse every time you eat. I also brush my teeth every time I eat, not too much toothpaste, it’s harsh on these lesions. The rinse calms it down. I have been trying aloe vera mixed with water, it seems to help a lot.
Oregano oil on my toothbrush worked well to remove. 1 drop and rinse.
Look at my old posts.
Be well,
Hoffy
Just a little update :)
A little confused........
Shocked and a little confused!
NEW - local support group for those in Cardiff and the South Wales area affected by a chronic blood cancer like CLL 
