More about Tenosynovial Giant Cell Tumor
TGCT comes in 2 forms that look the same under the microscope. The localized form is a single, well-defined nodule, most often in a finger or toe, and surgery often cures it. The diffuse form, once called pigmented villonodular synovitis (PVNS), spreads through the lining of a large joint, usually the knee, and it comes back more often. NORD reports recurrence after surgery of about 10-15% for the localized form and 50-70% for the diffuse form.
Keep reading about Tenosynovial Giant Cell Tumor
MRI is the main test, and a biopsy is sometimes needed. Surgery to remove the affected lining is the standard first treatment, and people without symptoms may simply be watched with MRI. For people whose surgery could worsen function or cause severe harm, the FDA has approved 2 medicines that block the CSF1 receptor: Turalio (pexidartinib) in 2019 and Romvimza (vimseltinib) in 2025.
What are the symptoms of Tenosynovial Giant Cell Tumor?
These are common symptoms of Tenosynovial Giant Cell Tumor, and how strong they are varies from person to person.
- Pain in one joint, most often the knee, ankle or hip
- Swelling of the joint, sometimes painless at first
- Stiffness and less range of motion
- Warmth or tenderness over the joint
- Locking, catching or popping, or a joint that feels unstable
- A slow-growing lump on a finger, toe or tendon in the localized form
Who gets Tenosynovial Giant Cell Tumor?
TGCT is usually diagnosed between ages 25 and 50, with a median age of about 40 according to NORD, though children and older adults can have it. The localized form is slightly more common in women, while the diffuse form affects women and men about equally (NORD). Diffuse TGCT most often involves the knee, then the ankle and hip, and the localized form most often a finger or toe. Diagnosis is often delayed by 3-4 years (NORD).
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Which medicines are FDA-approved for Tenosynovial Giant Cell Tumor?
There are currently 2 FDA-approved medications for Tenosynovial Giant Cell Tumor.
Source: openFDA drug labeling data. This list may not include all treatments. Always consult your doctor.
How to get help paying for Tenosynovial Giant Cell Tumor treatment
Charity funds and drugmaker programs for Tenosynovial Giant Cell Tumor, checked at the source.
- Romvimza (Vimseltinib) · Deciphera AccessPoint
- Turalio (Pexidartinib) · Daiichi Sankyo AccessCentral4U
Every program and fund for Tenosynovial Giant Cell Tumor, by insurance →
Side effects people have reported to the FDA
Side effects people have reported to the FDA
Real-world side effect reports from the FDA Adverse Event Reporting System (FAERS). Includes both FDA-approved drugs and investigational therapies from active clinical trials. Click any drug to see what patients reported.
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Diagnosis and genetic testing
How Tenosynovial Giant Cell Tumor is diagnosed
Not inherited. The CSF1 change is found only in some of the tumor's cells, and NORD says no genetic, environmental or lifestyle risk factor has been shown.
Trusted Tenosynovial Giant Cell Tumor resources
Reputable organizations and medical references for learning more about Tenosynovial Giant Cell Tumor, including disease registries, foundation resources, and clinical guidelines.
- NORD - Tenosynovial Giant Cell Tumor
- TGCT Support, a program of The Life Raft Group
- Mastboom et al., Acta Orthopaedica 2017 - Higher incidence rates than previously known in tenosynovial giant cell tumors
- Ehrenstein et al., 2017 - Tenosynovial giant cell tumor: incidence, prevalence and recurrence in Denmark
- FDA - FDA approves first therapy for rare joint tumor (Turalio)
- FDA - FDA approves vimseltinib for symptomatic tenosynovial giant cell tumor
- Merck KGaA - FDA accepts pimicotinib filing