What is the Treatment for Fibrodysplasia Ossificans Progressiva and Its Cost?

Treatment for FOP – Medications, Surgery Risks & Cost Breakdown

The primary treatment approach for Fibrodysplasia Ossificans Progressiva (FOP) focuses on symptom management and flare-up prevention. Since there is no permanent cure for this rare condition, treatment in India is relatively affordable. The cost of medications for managing symptoms typically ranges from Rs. 500 to Rs. 2,000.

What are the Medications for the Treatment of FOP and their Cost?

These are some of the common medications to treat Fibrodysplasia Ossificans Progressiva:

● Corticosteroids

High doses of corticosteroids, such as Prednisone, can help reduce inflammation and pain during flare-ups. The average cost of these medicines in India may range from Rs. 275 to Rs. 1,265. 

● NSAIDs and COX-2 Inhibitors

These medications help manage pain and inflammation after completing a course of corticosteroids. In India, NSAIDs typically cost between Rs. 263 and Rs. 500, while COX-2 inhibitors are comparatively more expensive, with prices starting from around Rs. 205.

Prednisone is the preferred medication at flare onset; NSAIDs or COX-2 inhibitors may help with symptoms. Other agents like mast- cell stabilizers or bisphosphonates lack strong evidence and are not standard flare-up treatments.

What are the Procedures to Remove Excess Bone Growth and Their Cost?

Some of the most common procedures for excess bone removal in severe cases of FOP include curettage and osteotomy. Curettage is not recommended for FOP-related bone, as any invasive procedure risks inducing further heterotopic ossification.  In India, these procedures typically cost between Rs. 80,000 and Rs. 2,50,000.

Why Preventing Trauma Is Essential in Managing FOP?

Avoiding trauma is crucial for preventing the formation of new bone in the affected region. This includes avoiding intramuscular injections, dental procedures that can cause jaw trauma, and preventing illnesses like the flu.

Why Do Doctors Avoid Surgical Interventions for Treating FOP?

Doctors generally do not recommend surgery for treating FOP condition, as it can worsen the condition, leading to new bone formation at the surgical site. However, in serious life-threatening situations, surgical planning with an FOP specialist may be considered.

At What Age Does FOP Start?

FOP typically begins in childhood, with the first symptoms often appearing before the age of 10. A hallmark of FOP is the presence of malformed great toes at birth, which can be a key diagnostic indicator.

What are the Diagnostic Tests for Fibrodysplasia Ossificans Progressiva?

Doctors generally diagnose FOP through a combination of clinical evaluation, imaging and genetic testing. A physical examination, including checking for malformed great toes, is crucial. Imaging helps visualise heterotopic ossification and pre-osseous lesions. Additionally, testing for the ACVR1 gene mutation confirms the diagnosis.

Is FOP Extremely Common?

No, Fibrodysplasia Ossificans Progressiva is not common, as it is a rare genetic disorder that affects approximately 1 in 2 million people worldwide. This condition arises from a complex genetic mutation, which is why it is a subject of ongoing research to understand its mechanisms and develop potential treatments.

Long-term physiotherapy and muscle trauma prevention can help manage the condition and delay the onset of symptoms. Individuals with FOP and their families need to have access to emotional and mental health support.