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Polycythemia Vera

Patient Perspectives

Hear from real patients who share their unique perspectives on their polycythemia vera (PV) journey with Jakafi® (ruxolitinib). Individual results may vary.

Image of Wayne
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This is your life on the line. Question everything.

EMBRACING THE ROAD AHEAD:
Wayne’s PV Journey

After a cat bite in 2013 resulted in a severe infection, Wayne’s blood test revealed surprising irregularities. Even after his infection cleared, he started to experience symptoms unrelated to the cat bite. It was the beginning of his journey with polycythemia vera (PV). As an avid motorcyclist and outdoor adventurer, Wayne decided to approach his symptoms head on by becoming a fierce advocate for his health.

Image of Bob
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This is your life on the line. Question everything.

CONTINUING HIS LIFE FULLY ENGAGED:
Bob’s PV Journey

As an active lawyer, golfer, traveler, and family man, 55-year-old Bob did not have any known health issues and was fully engaged in all aspects of his life. That’s why it came as quite a shock when, during a client meeting in 2005, he experienced an acute medical issue. On the advice of a physician friend, Bob’s client drove him to a nearby emergency room. Lab tests revealed that his red blood cell counts were alarmingly high: his hematocrit was 66, his hemoglobin, 22.

Image of Cindy
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The IncyteCARES representative worked with my insurance company.

FOLLOWING HER INSTINCTS:
Cindy’s PV Journey

When blood tests from her annual physical revealed an unusually high hematocrit level, Cindy’s family doctor immediately suspected cancer. He referred her to a local oncologist who she felt was less familiar with her rare condition.



When B-12 shots were the only recommended course of therapy, Cindy felt that there had to be more that she could be doing. Although she still didn’t fully understand what was going on with her body, she did know that she wasn’t feeling any better. She also knew that she needed to take additional action, and seeking the help of a specialist seemed like a good place to start.

“Something was telling me that’s not enough.”

In pursuit of a second opinion, Cindy went to a major cancer center, where additional lab work confirmed that she had polycythemia vera (PV), a rare, chronic blood cancer. She was immediately started on hydroxyurea (HU) and encouraged by the myeloproliferative neoplasm (MPN) specialist to attend her first patient meeting to learn more about her condition.

“Once [my Healthcare Professional] knew what it really was…I knew I was in the right hands.”

Cindy remained on HU for several years, until she started to experience troubling side effects. At the time, she had been mourning the recent loss of her husband of 35 years. Assuming that it was simply part of her grief, she opted not to share how she was feeling with her care team. As time passed, however, she started to suspect that it could be treatment related. Once again, her instincts urged her to take action and talk to her Healthcare Professional.

“I was feeling run down. I could hardly do anything. That's how bad I was feeling.”

Her MPN Specialist confirmed that treatment with HU was no longer controlling her PV and recommended a switch to Jakafi® (ruxolitinib). Although she was initially anxious about making a change, she was ready to explore a treatment possibility with Jakafi. She was glad that she did.

Another pleasant surprise was that her care team enrolled her in IncyteCARES for Jakafi, the patient support program for eligible patients taking Jakafi. As a result, Cindy got information and support to help her throughout her treatment journey with Jakafi.

"I didn't ask them. The IncyteCARES representative worked with my insurance company to provide the support that I needed. I am so thankful."

As part of IncyteCARES for Jakafi, Cindy also receives ongoing assistance with ordering and refilling her Jakafi prescription every month. Today, she continues to see her specialist every few months. And when she has a question about her health, she no longer delays taking action. She does her own research online and doesn’t hesitate to call her Healthcare Professional for answers.

She has been taking Jakafi since 2017.

“I feel so blessed for Jakafi.”

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What is JAKAFI® or JAKAFI XR™?

What is JAKAFI® or JAKAFI XR™?

JAKAFI or JAKAFI XR (ruxolitinib) is a prescription medication used to treat adults with certain types of myelofibrosis (MF).
It is not known if JAKAFI or JAKAFI XR is safe or effective in children for treatment of myelofibrosis.

JAKAFI or JAKAFI XR is a prescription medication used to treat adults with polycythemia vera (PV) who have already taken a medicine called hydroxyurea and it did not work well enough or they could not tolerate it.
It is not known if JAKAFI or JAKAFI XR is safe or effective in children for treatment of polycythemia vera.

JAKAFI or JAKAFI XR is a prescription medication used to treat adults and children 12 years of age and older with acute graft-versus-host disease (GVHD) who have taken corticosteroids and they did not work well enough.

JAKAFI or JAKAFI XR is a prescription medication used to treat adults and children 12 years of age and older with chronic graft-versus-host disease (GVHD) who have taken one or two types of treatments and they did not work well enough.

Important Safety Information

JAKAFI or JAKAFI XR can cause serious side effects, including:

Low blood counts: JAKAFI or JAKAFI XR may cause low platelet, red blood cell, and white blood cell counts. If you develop bleeding, stop taking JAKAFI or JAKAFI XR and call your healthcare provider. Your healthcare provider will do a blood test to check your blood counts before you start and regularly during your treatment. Your healthcare provider may change your dose or stop your treatment based on the results of your blood tests.
Tell your healthcare provider right away if you develop or have worsening symptoms such as

  • unusual bleeding
  • bruising
  • tiredness
  • shortness of breath
  • a fever

Infection: You may be at risk for developing a serious infection during treatment with JAKAFI or JAKAFI XR. Tell your healthcare provider if you develop any of the following symptoms of infection:

  • chills
  • nausea
  • vomiting
  • aches
  • weakness
  • fever
  • painful skin rash or blisters

Worsening of symptoms after interrupting or stopping treatment. Signs and symptoms of myelofibrosis may worsen after you stop treatment.

Do not interrupt or stop treatment without talking to your healthcare provider. Tell your healthcare provider right away if you have any of the following after stopping treatment:

  • fever
  • trouble breathing
  • weakness
  • night sweats
  • feeling dizzy or lightheaded
  • pain in left upper stomach area or left shoulder

Cancer: Some people have had certain types of non-melanoma skin cancers during treatment with JAKAFI or JAKAFI XR. Your healthcare provider will regularly check your skin during your treatment. Tell your healthcare provider if you develop any new or changing skin lesions during treatment.

Increases in cholesterol: You may have changes in your blood cholesterol levels during treatment with JAKAFI or JAKAFI XR. Your healthcare provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking JAKAFI or JAKAFI XR and as needed.

Increased risk of major cardiovascular events such as heart attack, stroke or death in people who have cardiovascular risk factors and who are current or past smokers while using another JAK inhibitor to treat rheumatoid arthritis:

Get emergency help right away if you get any symptoms of a heart attack or stroke during treatment with JAKAFI or JAKAFI XR, including:

  • discomfort in the center of your chest that lasts for more than a few minutes or that goes away and comes back
  • severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw
  • pain or discomfort in your arms, back, neck, jaw, or stomach
  • shortness of breath with or without chest discomfort
  • breaking out in a cold sweat
  • nausea or vomiting
  • feeling lightheaded
  • weakness in one part or on one side of your body
  • slurred speech

Increased risk of blood clots: Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) have happened in people taking another JAK inhibitor for rheumatoid arthritis and may be life-threatening.

Tell your healthcare provider right away if you have any signs and symptoms of blood clots during treatment with JAKAFI or JAKAFI XR, including:

  • swelling, pain, or tenderness in one or both legs
  • sudden, unexplained chest or upper back pain
  • shortness of breath or difficulty breathing

Possible increased risk of new (secondary) cancers: People who take another JAK inhibitor for rheumatoid arthritis have an increased risk of new (secondary) cancers, including lymphoma and other cancers. People who smoke or who smoked in the past have an added risk of new cancers.

The most common side effects of JAKAFI or JAKAFI XR include:

  • for certain types of myelofibrosis (MF) – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea
  • for certain types of polycythemia vera (PV) – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea
  • for acute GVHD – low platelet counts, low red or white blood cell counts, infections, and swelling
  • for chronic GVHD – low red blood cell or platelet counts and infections, including viral infections

These are not all the possible side effects. Ask your pharmacist or healthcare provider for more information. Call your doctor for medical advice about side effects.

Before taking JAKAFI or JAKAFI XR, tell your healthcare provider about:

  • all the medications, vitamins, and herbal supplements you are taking
  • your medical conditions, including if you
    • have or had low white or red blood cell counts
    • have an infection
    • have or had tuberculosis (TB) or have been in close contact with someone who has TB
    • had shingles (herpes zoster)
    • have or had hepatitis B
    • have a high level of fat in your blood (high blood cholesterol or triglycerides)
    • have or have had a blood clot, heart attack, other heart problems, or stroke
    • are a current or past smoker
    • had cancer
    • have or had liver or kidney problems or are on dialysis. If you are on dialysis, JAKAFI or JAKAFI XR should be taken after your dialysis
    • have any other medical condition

Women should not take JAKAFI or JAKAFI XR while pregnant or planning to become pregnant. Do not breastfeed during treatment with JAKAFI or JAKAFI XR and for 2 weeks after the final dose.

How should I take JAKAFI or JAKAFI XR?

  • Take exactly as your healthcare provider tells you.
  • Do not change your dose or stop taking JAKAFI or JAKAFI XR without first talking to your healthcare provider. If you stop treatment, symptoms of your condition may return.
  • If you miss a dose, take your next dose at your regular time. Do NOT take 2 doses at the same time.
  • You may have regular blood tests during your treatment. Based on the results, your healthcare provider may change your dose or stop JAKAFI or JAKAFI XR.
  • IF YOU ARE PRESCRIBED JAKAFI:
    • Take JAKAFI 2 times a day with or without food.
    • JAKAFI may also be given through certain nasogastric tubes.
    • Tell your healthcare provider if you cannot take JAKAFI by mouth. Your healthcare provider will decide if you can take JAKAFI through a nasogastric tube. Ask your healthcare provider to give you specific instructions on how to properly take JAKAFI through a nasogastric tube.
  • IF YOU ARE PRESCRIBED JAKAFI XR:
    • Take JAKAFI XR 1 time a day with or without food.
    • Swallow JAKAFI XR whole. Do not split, crush, or chew.

Please see the Full Prescribing Information, including Patient Information, which includes a more complete discussion of the risks associated with JAKAFI or JAKAFI XR.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

You may also report side effects to Incyte Medical Information at 1-855-463-3463.