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What is a FOP Flare-up?

People living with FOP may experience unpredictable episodes of soft tissue swelling, pain, reduced movement, stiffness, referred to as ‘flare‐ups’.1–4 These flare-ups usually result in extra bone formation, but not always.4

Recognizing the warning signs or symptoms of a FOP flare-up can allow you to get the help you need for yourself or your loved one as soon as possible.

Recognizing FOP Flare-ups

FOP symptoms due to a flare-up typically include one or more of the following:4

  • Pain
  • Swelling
  • Redness
  • Warmth
  • Stiffness
  • Decreased range of motion

flare up

A sudden swelling that is red and warm to the touch may be a sign of a FOP flare-up1–4

 

The first signs of a FOP flare-up can include the sudden appearance of swellings, lumps or bumps along with pain and discomfort.4 In many cases, the swellings appear on the head, neck and upper back although they may move around to different parts of the body and may disappear as quickly as they appeared.4,5

Take action

If you suspect a FOP flare-up talk to your doctor as soon as possible.

It is important to let your doctor know about any flare-ups so that they can be managed appropriately. This includes avoiding or approaching with caution any action or medical intervention that could cause further bone formation and thus make FOP worse.

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Can FOP flare-ups be prevented?

FOP flare-ups can occur without warning or any obvious reason and cannot always be avoided or prevented. There are some known triggers of FOP flare-ups and these include:3,4

  • Injuries, such as bumps or bruises or falls
  • Muscular stretching
  • Over-exertion or tiredness
  • Intramuscular injections
  • Certain dental procedures
  • Biopsy

Being aware of what causes FOP flare-ups may help to avoid unnecessary actions or medical procedures. If medical procedures do need to take place you can seek additional advice and support to minimize the risk of flare-ups.

Vaccinations should be approached with caution. Your care team should reach out to physicians experienced in treating FOP to evaluate appropriate vaccination recommendations.

prevent-flare-ups

doctor

Managing FOP flare-ups

Although there may be no forewarning a flare-up, there are ways to manage pain or inflammation that might come with it.3

For any question related to treatment or symptom management, please talk to your doctor or pharmacist.

It is recommended that vaccines should be approached with caution. You should let your doctor know that the International Clinical Council on FOP provides specific vaccination recommendations in the Medical Management of FOP Treatment Considerations.3

According to the ICC, for necessary dental procedures, it has been recommended that overstretching of the mouth and injections to numb the lower jaw should be avoided.3

While activity is encouraged at all ages, it has also been recommended to avoid passive range of motion exercises.3

suspect FOP

Is it FOP?

Read about the signs and symptoms of Fibrodysplasia Ossificans Progressiva or FOP as well as about conditions that FOP may be mistaken for at first.

Learn more

Know FOP

Learn about Fibrodysplasia Ossificans Progressiva or FOP, including what causes FOP and how FOP can be managed.

Know the facts

FOP Flare-Ups

Understand how to recognize the warning signs of a Fibrodysplasia Ossificans Progressiva flare-up.

FOP Flare-Ups

  1. Kaplan FS, et al. In: J Bilezikian et al., editors. Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism. 9th ed. Washington, DC: American Society for Bone and Mineral Research, 2019:865–70.
  2. Pignolo RJ, Shore EM, Kaplan FS. Fibrodysplasia ossificans progressiva: diagnosis, management, and therapeutic horizons. Pediatr Endocrinol Rev. 2013;10(0 2):437–48.
  3. Di Rocco M, Baujat G, Bertamino M, et al. International physician survey on management of FOP: a modified Delphi study. Orphanet J Rare Dis. 2017;12(1):110.
  4. Pignolo RJ, Bedford Gay C, Liljesthröm M, et al. The natural history of flare-ups in fibrodysplasia ossificans progressiva (FOP): A comprehensive global assessment. J Bone Miner Res 2016: 31(3) 650–6.
  5. Pignolo RJ, Shore EM, Kaplan FS, et al. Fibrodysplasia ossificans progressiva: clinical and genetic aspects. Orphanet J Rare Dis. 2011; 6:80.
  6. Kaplan FS, et al. The medical management of fibrodysplasia ossificans progressiva: current treatment considerations. Proc Intl Clin Council FOP 1:1-111, 2019
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Please always consult a healthcare professional if you require healthcare advice or if you have any specific concerns regarding Fibrodysplasia Ossificans Progressiva. The information provided here is not intended to replace professional advice. This website has been developed by Ipsen in collaboration with those living with Fibrodysplasia Ossificans Progressiva and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit our website for more information about us, or to contact us directly. Website design and development by Kanga Health Ltd. Website reference NON-US-001996 December 2020