Pluvicto and tongue and taste issues

[TTJJ1]

Previously posted the below message. Just had third Pluvicto infusion (6/9) and tongue and taste issue has gotten worse. Tried all suggestions from Oral Medicine at Dana and suggestions on HealthUnlocked. Has anyone experienced this issue and if so, any further suggestions. Your input always appreciated.

Good news is that PSA dropped by 63% from the start of Pluvicto (after two infusions).

Diagnosed in 2017, Gleason 10 Brachy therapy, ADT/ART. 2019 Daro plus lupron. 2021 Provenge. 12/22 Taxotere; three infusions. After first infusion, neutropenic colitis - 3 day hospital stay for intravenous antibiotic followed by 5 day oral antibiotic. Began to experience burning tongue and taste issues. This started to resolve after 6 weeks and then began again after each infusion of Taxotere, but seemed to get better after several weeks. After first Pluvicto infusion (3/23) condition seemed to get worse and has continued to worsen; second Pluvicto infusion 5/23.

Burning tongue, very bad and salty taste with all food, spotty coated tongue. Oral Med at Dana first prescribed Nystatin and fluconazole mouth wash with no help. Then Lidocane and Benadryl mix mouth wash with no help. They diagnosed first thrush then geographic tongue and burning tongue syndrome.

Other than this issue doing well, very active, still working daily and running 3 miles every morning.

Last blood levels (5/9/23) all in normal range with the exception of RBC, HCT, HGB which are just below normal range. B12 and B6 are in lower normal range.

Anyone experience same symptoms. Any advice???

[rsgdmd]

Do you have dry mouth, which is common with Pluvicto? Maybe ask about a capsaicin mouthrinse. There are studies which show it can help. Also, avoid alcohol in all forms.

[TTJJ1 in reply to rsgdmd]

Thank you for the suggestion, heard this may help.

Will try it.

All the best to you.

[leebeth]

My husband used Xylimelts and found them helpful.

[TTJJ1 in reply to leebeth]

Thank you for suggestion. I have tried Xylimelts, very little relief.

All the best to you and your husband.

[j-o-h-n]

I have burning tongue when I brush my teeth with regular tooth paste or drink carbonated beverages..... burning only last a few seconds....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/16/2023 11:26 PM DST

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Causes

The cause of burning mouth syndrome may be primary or secondary.

Primary burning mouth syndrome

When the cause can't be found, the condition is called primary or idiopathic burning mouth syndrome. Some research suggests that primary burning mouth syndrome is related to problems with the nerves involved with taste and pain.

Secondary burning mouth syndrome

Sometimes burning mouth syndrome is caused by an underlying medical condition. In these cases, it's called secondary burning mouth syndrome.

Underlying problems that may be linked to secondary burning mouth syndrome include:

Dry mouth, which can be caused by some medicines, health problems, problems with the glands that make saliva or the side effects of cancer treatment.

Other oral conditions, such as a fungal infection of the mouth called oral thrush, an inflammatory condition called oral lichen planus or a condition called geographic tongue that gives the tongue a maplike appearance.

Not getting enough nutrients, such as a lack of iron, zinc, folate (vitamin B-9), thiamin (vitamin B-1), riboflavin (vitamin B-2), pyridoxine (vitamin B-6) and cobalamin (vitamin B-12).

Allergies or reactions to foods, food flavorings, other food additives, fragrances or dyes, dental materials, or mouth care products.

Reflux of stomach acid that enters your mouth from your stomach, also called gastroesophageal reflux disease (GERD).

Certain medicines, especially high blood pressure medicines.

Oral habits, such as pushing your tongue against your teeth, biting the tip of your tongue, and grinding or clenching your teeth.

Endocrine disorders, such as diabetes or an underactive thyroid known as hypothyroidism.

A very irritated mouth, which may result from brushing your tongue too much or too hard, using abrasive toothpastes, overusing mouthwashes, or having too many acidic foods or drinks. Dentures that don't fit well may cause irritation that can make symptoms worse.

Psychological issues, such as anxiety, depression or stress.

Risk factors

Burning mouth syndrome is uncommon. However, your risk may be greater if you're:

Female.

In perimenopause or you're postmenopausal.

Over the age of 50.

A smoker.

Burning mouth syndrome usually starts suddenly, for no known reason. But certain factors may increase your risk of developing burning mouth syndrome, including:

Recent illness.

Some long-term medical conditions such as fibromyalgia, Parkinson's disease, autoimmune disorders and neuropathy.

Previous dental work.

Allergic reactions to food.

Certain medicines.

Traumatic life events.

Stress.

Anxiety.

Depression.

Complications

Complications that burning mouth syndrome may cause are mainly related to discomfort, such as problems falling asleep or difficulty eating. Long-term cases involving a lot of discomfort also could lead to anxiety or depression.

Prevention

There's no known way to prevent burning mouth syndrome. But you may be able to reduce your discomfort by not using tobacco, limiting acidic or spicy foods, not drinking carbonated beverages, and using stress management methods. Or these measures may prevent your discomfort from feeling worse.

By Mayo Clinic Staff

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[TTJJ1 in reply to j-o-h-n]

Thank you for the info.

Always appreciated