PVNS: Treatment Options and Risks for Knee Recurrence

Pigmented Villonodular Syn

Hello Doctor: I have undergone MRI scans at China Medical University in Taichung and Taipei Veterans General Hospital, both confirming a diagnosis of pigmented villonodular synovitis (PVNS).
Previously, I had an arthroscopy performed at China Medical University, followed by debridement two months later.
However, it recurred after one year, and I then transferred to Taipei Veterans General Hospital, where it was suspected that there was also growth behind the knee, leading to another recurrence.
I underwent surgery again, with debridement performed on both the front and back of the knee, followed by radiation therapy postoperatively.
Now, it seems to be recurring again, and I have an MRI scheduled for May.
However, I have planned to travel abroad during the summer, and I would like to ask if it would be inappropriate to delay surgery until October, and what the associated risks might be.
Currently, this condition can only be treated surgically, and the recurrence rate is high.
I would like to know if multiple surgeries on the knee at my young age would increase the likelihood of future knee degeneration or the need for a knee replacement.
I came across information on a new drug, PLX3397, developed in the United States for the treatment of PVNS (link provided below).
However, upon researching the drug, I found that it is primarily used for treating tenosynovial giant cell tumors (TGCT).
I am somewhat confused about whether PVNS and TGCT are the same disease.
https://www.facebook.com/notes/pvns-pigmented-villionodular-synovitis-bone-tumour/new-treatment-for-pvns-in-pill-form-2016/1014981775222257 If a drug receives FDA approval in the United States, how long does it typically take for patients in Taiwan to be able to use it? Thank you, Doctor.

Niming, 20~29 year old female. Ask Date: 2016/05/13

Dr. Shi Guozheng reply Orthopedics

1.
PVNS often recurs; it has been over six months since the surgery in October, and it should still be manageable unless the symptoms are severe and affect function.

2.
If the articular cartilage is ultimately damaged, there is a higher likelihood of needing knee arthroplasty compared to the general population.

3.
Medications available in the United States must undergo review and approval by the Ministry of Health and Welfare before they can be imported into Taiwan; the duration of this process is uncertain.
PVNS and TGCT are different diseases.

4.
If knee arthroplasty becomes unavoidable, there are still options for improvement.

Reply Date: 2016/05/13

More Info

Pigmented Villonodular Synovitis (PVNS) is a rare, benign condition characterized by the proliferation of synovial tissue in the joints, particularly the knee. It can lead to joint pain, swelling, and limited mobility. Unfortunately, PVNS has a high recurrence rate even after surgical intervention, which can complicate treatment and management strategies.

Treatment Options and Risks
1. Surgical Intervention: The primary treatment for PVNS is surgical excision, which can be performed through arthroscopy or open surgery. The goal is to remove the affected synovial tissue completely. However, as you've experienced, even after multiple surgeries, the risk of recurrence remains significant. Each subsequent surgery can lead to scarring and joint damage, which may increase the likelihood of osteoarthritis and the need for knee replacement in the future.

2. Radiation Therapy: Post-operative radiation therapy is sometimes used to reduce the risk of recurrence, especially if complete excision of the tumor is not possible. While this can be effective, it also carries risks, including potential damage to surrounding tissues and an increased risk of secondary malignancies.

3. New Drug Therapies: You mentioned PLX3397, which is a targeted therapy that has shown promise in treating conditions like tenosynovial giant cell tumors (TGCT). PVNS and TGCT are related; both involve similar pathological processes and can be treated with similar approaches. However, they are not identical conditions. PLX3397 works by inhibiting the colony-stimulating factor 1 receptor (CSF1R), which plays a role in the growth of these tumors. While this drug is primarily studied for TGCT, its efficacy in PVNS is still under investigation.

4. Recurrence and Long-term Risks: Given your history of multiple surgeries, it is understandable to be concerned about the long-term implications for your knee health. Repeated surgeries can lead to joint degeneration, increasing the risk of developing osteoarthritis and potentially requiring knee replacement surgery at a younger age. The cumulative trauma from surgeries can also affect the joint's biomechanics, leading to further complications.

Timing of Surgery
Regarding your question about delaying surgery until October, if your symptoms are manageable and not significantly affecting your quality of life, it may be reasonable to wait. However, if you experience increased pain, swelling, or functional limitations, it would be advisable to consult your healthcare provider about the urgency of surgical intervention. Delaying surgery could potentially allow the condition to worsen, making future surgeries more complicated.

Access to New Treatments
As for the timeline for new drugs like PLX3397 to become available in Taiwan after FDA approval, this can vary significantly. Typically, the process involves local regulatory approval, which can take several months to years, depending on the specific drug and the regulatory environment. It's best to consult with your healthcare provider for the most current information regarding the availability of new treatments in your region.

Conclusion
In summary, managing PVNS requires a multifaceted approach, including surgical intervention, potential radiation therapy, and monitoring for recurrence. While new treatments are on the horizon, the current standard remains surgical excision. Given your history, it is crucial to maintain open communication with your healthcare team to tailor a treatment plan that considers your specific circumstances and long-term health goals. Regular follow-ups and imaging studies will be essential in monitoring your condition and making timely decisions regarding further interventions.

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