Teeth pain: Dears, I am on Ibrutinib for... - CLL Support

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Teeth pain

AshGS profile image
11 Replies

Dears,

I am on Ibrutinib for 3 months now and besides losing 17kg, I also got several issues - at the same time - with my teeth; between pain, infection and dental caries. So do you think it is resulting from the Ibrutinib (the teeth issues surging all together)?

In case I would need to take antibiotics for the teeth infection, is there a problem in that? how about doing an operation if needed by the dentist?

Thanks :)

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AshGS profile image
AshGS
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11 Replies
Smith123456 profile image
Smith123456

I have trigeminal neuralgia. had before my leukemia issue. You might consult a neurologist. Trigeminal neuralgia usually manifests with teeth pain. I actually had a root canal back in the past that i didn't really need. tegretol is the drug of choice for it. My teeth pain and headaches literally dissapeared within a week. I now use gabapentin because tegretol is counter indicated with Imbruvica.

zaax profile image
zaax in reply toSmith123456

The leukemia cells in CLL reside in the marrow space. So you will get pain were ever Ibrutinib is removing the CLL from the marrow, & there is marrow in the jaw

Smakwater profile image
Smakwater in reply toSmith123456

Smith,

Sorry to hear you have the dreaded TGN

I actually had two molers pulled and I was considering a third when I discovered that I had trigeminal neuralgia. I never incurred infection though. I was experiencing intense pain in the tooth root areas. Two doses of amitryptaline shut my neuralgia off.

The pain is like having a kidney stone in your head that moves around. The condition is actually deemed the suicide disease.

rdhmag.com/patient-care/art...

aans.org/Patients/Neurosurg...

With some effort, publications describing indication of CLL/T cell influence to sensory trigeminal ganglia can be reinforced.

If this is what you are dealing with, I hope that AshGS can get it resolved with one of the three drugs mentioned: Tegretol - Gabapentin - Amitryptaline.

JM

Smith123456 profile image
Smith123456 in reply toSmakwater

tegretol totally relieved-then when i had to switch to gabapentin because of the imbruvica-it took a few months to work as well-but all is now fine with my TGN as long as i take my pills for it.

Smakwater profile image
Smakwater in reply toSmith123456

Whew! I am glad you got it worked out.

I have had kidney stones so bad that I had to have a surgical procedure, and the TGN trumped that pain.

tonyfrench profile image
tonyfrench in reply toSmakwater

I'm a Kidney Stone "Factory", I average between 100 to 150 2mm to 4mm stones a year, and have been for the past 20 years, before that, it was between 25 to 50 a year, I've had stones all of my life, Imbruvica has actually "slowed" down the production of them

Smakwater profile image
Smakwater in reply totonyfrench

Good Grief! You poor soul.

Having CLL is also like being a Uric acid factory. Dying white blood cells influence hyperuricemia which can influence renal stones.

Hyperuricemia was found in 30.2% of patients with hematological malignancies, including AML, acute lymphoblastic leukemia, chronic myeloid leukemia, myelodysplastic syndrome, myeloproliferative diseases, and chronic lymphocytic leukemia - Taken from: ar.iiarjournals.org/content...

I hope you are able to control this awful condition.

BeckyLUSA profile image
BeckyLUSA

It could also be a sinus infection. They can cause severe tooth pain. With our compromised immune systems, we can easily get an infection and because they are compromised we don’t always get the same symptoms because our bodies are not fighting it off as well. Just a thought. Definitely ask your doctor.

BeckyL USA

janvog profile image
janvog

Just my experience related to sudden tooth sensitivity, not caused by cavity but old age and sugarless menthol cough drops. After a few days brushing the sensitivity vanished with "Sensodyne Pro-Namel Intensive Enamel Repair Toothpaste for Sensitive Teeth and Cavity Prevention" .

AnneHill profile image
AnneHill

I had pain between 2 different teeth. The dental hygenist hasnt been working because of covid 19 . We are always being told to use the little interdental brushes and I only used them when I remembered. The dentist did an xray and I had food between those teeth.

He told me to brush my teeth 3 times a day and use the interdental brushes 3 times.

Also I think as mentioned sensitive pro enamal toothpaste. The gums bleed but I was told to carry on and it stops.

Antibiotics ok but operations need to be discussed with your oncologist because you will need the ibrutinib stopping before and after to avoid excessive bleeding.

My teeth are a lot better now.

I hope things improve, Anne uk

AshGS profile image
AshGS in reply toAnneHill

Many thanks dear Anne.. Glad that you are now better!

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