A guide for managing pain and improving joint health

Stop pain from stopping you

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Two sources of pain

People with inhibitors can feel:

Acute pain

Acute pain happens suddenly and is usually intense. This type of pain is often the sign of

a joint or muscle bleed. It can last for hours or days. To relieve the pain, quickly treat with

clotting factor and R.I.C.E. Talk with your doctor about treatment that will help you relieve

acute pain.

Many times, a bleed occurs when there is stress on a joint. This type of bleed is called an acute

bleed, or hemarthrosis. The major cause of joint damage is repeated bleeding into the same

joint, or target joint. After many bleeds, the lining around the synovial membrane of the target

joint may become swollen and thick. This is called chronic synovitis. It can limit joint motion.

Certain pain medicines may help people with inhibitors gain quick relief and minimize side effects. See “Guide to common pain medicines” on page 6 for more information.

Watch a video of what happens during a bleed. Visit the Keeping Joints Healthy section of ChangingPossibilities-US.com.

• Acute (short-term)

pain from bleeds into

muscles and joints

• Chronic (long-term)

pain from arthritis and

other joint diseases

Healthy knee The bleed starts to enter the joint

The joint swells. It may become so large that it is called “cantaloupe knee”

Treat pain fast so it does not last

People with hemophilia A or B with inhibitors often have pain due to delayed treatment

of bleeds. This may include aches, soreness, or tenderness. It can last for a few hours or a

few months.

Pain management can help relieve short-term pain and minimize long-term pain. The first step

is to recognize bleeds and manage the symptoms at the first sign. Ideally, treatment should

begin within 2 hours. Symptom management should also begin as soon as possible. The faster

you administer factor, the faster you may be able to stop a bleed and prevent further joint

damage. Create a pain management plan with the help of your hemophilia treatment center

(HTC) or your doctor.

R.I.C.E. Rest. Ice. Compress. Elevate.

When you have a bleed, R.I.C.E. can help.

Follow these steps:

• Rest the joint

• Ice the joint with a cold pack for at

least the first 12 hours while you are

awake. This may help reduce swelling

after a bleed

• Compress the joint with an elastic

bandage around the joint

• Elevate the joint—usually above the

heart—to help drain the blood

For acute pain, begin treatment for symptoms immediately.

Model is used for illustrative purposes only.

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Healthy joints can help keep you moving

Bleeds do more than cause pain. Over time, they can damage your joints. Keeping your joints

as healthy as possible is essential. Damaged joints mean more pain and less mobility. Read on

to learn some ways to keep your joints healthy.

What can you do about joint health?

Create an exercise plan so you can keep fit. Talk with your doctor before you begin any

exercise program. Here are some benefits of exercise:

• Exercise makes muscles stronger. This may help lessen joint bleeds and help your

body recover faster after a bleed

• Exercise can improve balance, helping you avoid falls that may cause a bleed

• Exercise (and eating right) helps keep you at a healthy weight. That means less

stress on your joints

• Exercise can be fun! Find an activity you enjoy or have a friend join you

If you are in a wheelchair or on crutches, you can still exercise. Because everyone with

inhibitors is different, it is important to talk with your doctor and HTC team. They can

help you choose activities that work for you. Visit the Life With Inhibitors section of

ChangingPossibilities-US.com for more information.

For a helpful guide on preparing for travel, join The Coalition and visit the

Resources section of ChangingPossibilities-US.com.

SevenSECURE® is now offering reimbursement for gym memberships

and fitness classes. Enroll today!

Exercise for long-term pain relief

Pain management involves moving stiff joints and exercising safely. This may help prevent

pain and ease pain in already damaged joints by allowing a full range of motion. Not moving

the joint may lead to more pain and disability over time. Be sure to make an exercise plan

with the help of your doctor, HTC team, or physical therapist—and exercise daily.

Guide to pain identification and management

For examples of exercises, download the exercise flashcards in

the Resources section of ChangingPossibilities-US.com.

Short-term (acute) pain

Common symptoms • Tingling or bubbling sensation

• Swelling

• Decreased range of motion or use of a joint

• Heat—skin feels warm to the touch

Probable causes • A bleed that needs treatment

Risks if ignored • Increases recovery time

• May cause joint damage and lead to chronic pain

Recommended treatment • Factor

• R.I.C.E.

• Pain medicines

What to avoid • Doing nothing about the pain

• Drugs that inhibit clotting

Model is used for illustrative purposes only.

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Guide to common pain medicinesNOTE: abbreviated terms are spelled out below table.

Nonopioids Opioids

Acetaminophen

NSAIDs

TraditionalCOX-2

inhibitorsExamples • Tylenol® • Aspirin

• Ibuprofen

• Ketoprofen

• Celecoxib(Celebrex®)

• Fentanyl

• Hydromorphone

• Oxycodone HCI(OxyContin®)

• Oxycodone/ acetaminophen (Percocet®)

• Morphine

• Codeine

Recommended for people with hemophilia

Yes No Yesa Yesb

Possible side effects or safety considerations

• Misuse can affect liver functionc

• Inhibit clotting

• CV side effects

• CNS effects– Excitation, inhibition

• GI effects– Nausea, constipation

• CV effects– Depression

of the heart and vascular dilation

Alternative pain management

Nontraditional pain management methods such as self-hypnosis, massage, and other

relaxation methods sometimes help people with inhibitors. The following techniques may

help you:

• Hydrotherapy—exercising in water to relieve pressure on joints

• Massage—using the hands and fingers to rub and press sore muscles and other soft tissues

• Cognitive-behavioral therapy— eliminating destructive behaviors through active,

positive thinking

• Guided imagery or visualization—using sights, sounds, or other sensations to imagine

healing conditions

• Hypnosis—a sleeplike state that is induced by suggestion

To learn more about pain management, talk with your doctor or HTC team.

You can also learn more by visiting nccam.nih.gov.

Abbreviations: NSAIDs=nonsteroidal anti-inflammatory drugs; COX-2=cyclooxygenase-2; HCl=hydrochloride; CNS=central nervous system; GI=gastrointestinal; CV=cardiovascular.

a The National Hemophilia Foundation’s Medical and Scientific Advisory Council recommends that, because of possible side effects to the heart and circulatory systems, the use of COX-2 inhibitors should be limited to the lowest effective dose and the shortest amount of time.

bOpioid use among patients with hemophilia is reportedly limited, despite high levels of chronic pain.c The American Liver Foundation recommends that people limit use to 3000 milligrams per 24 hours.

Model is used for illustrative purposes only.Talk with your doctor before taking any medicines.

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Chronic pain

Chronic pain is ongoing discomfort. It comes from damage from repeat bleeds or other joint

damage. This type of pain may last for months or longer. Your best strategy for managing

chronic pain is prevention with regular exercise and stretching. Certain pain medicines may

also help. See “Guide to common pain medicines” on page 6 for more information.

The effects of joint bleeds

If bleeds continue, the bone surface starts to wear away. Rough edges of the bone tear the

thickened synovium. This process causes more bleeds and damage. The joint gets bigger and

may change shape or move slightly. These joint changes make it harder to move without

pain or other problems. This is called progressive arthritis. If range of motion becomes

permanently limited, it is called hemophilic arthropathy.

Once a joint is severely damaged, the body may not be able to heal itself. You may have pain

or lose range of motion. You may even have a fixed joint that you cannot move at all. At this

point, talk with your doctor about the option to have surgery.

Over time, this can lead to wearing away

of the bone

Permanent damage results in a

destroyed joint

Swelling of tissues in the knee may

become permanent

Long-term (chronic) pain

Common symptoms • Lasts for months or longer

• Joint stiffness, severely limited range of motion

Probable causes • Damage from many bleeds

• Other joint damage

Risks if ignored • Harder to move joints

• Harder to do daily chores

Recommended treatment • Pain medicines (see page 6)

• Exercise/stretching

• Physical therapy

• Alternative methods (see page 7)

What to avoid • Not moving the joint

• Ignoring the pain

• Drugs that inhibit clotting

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Is surgery right for me?

Choosing to have surgery is a major decision. It can lead to less pain and more mobility,

but there are risks. Above all, it requires a lot of work and commitment. Talk with

your family and your doctor. You can also learn more in the Elective Surgery section of

ChangingPossibilities-US.com. If you are considering surgery, the questions below may help

you start the process.

• How much does managing the health of your joints get in the way of your daily life?

• How much pain do you have because of your joints?

• Are you otherwise well?

• Do you have insurance?

• Can you commit to doing the physical therapy needed before and after surgery?

• Do you have a support team of family or close friends?

• What are your personal goals?

The goal is to keep you moving through life. It is important to be able to participate fully in

life without serious disability. Surgery may help. Talk with your doctor and HTC team about

your options.

“ I knew the more physically fit I was

going into the surgery, the better the

outcome was going to be.”

—Eric Lowe, a 29-year-old man with an inhibitor

The choice to have surgery is not a simple decision. You

have to decide if the benefits of surgery are worth the

potential risks. Learn more by visiting the Elective Surgery

section of ChangingPossibilities-US.com.

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Glossary

Learning the terms used in this brochure will help you when talking with your health

care providers.

Acute bleed—A bleed that does not last long; usually resolves in 1 week.

Arthritis—Swelling and inflammation of joints.

Chronic synovitis—A condition where the synovial membrane around a joint becomes

swollen and thick.

Hemarthrosis—Bleeding into a joint.

Hemophilic arthropathy—Chronic joint disease among people with hemophilia.

Synovial membrane—A layer of connective tissue that lines the cavities of a joint and makes

synovial fluid, which has a lubricating function (also called Synovium).

Synovium—See Synovial membrane.

Target joint—A joint (eg, hip, knee, elbow, ankle) that has repeated bleeds (eg, 4 times

within 6 months).

There’s a comprehensive glossary of terms

on ChangingPossibilities-US.com.

Check it out today!

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Novo Nordisk Inc., 100 College Road West, Princeton, New Jersey 08540 U.S.A.

Celebrex®, OxyContin®, Percocet®, and Tylenol® are registered trademarks of Pfizer Inc, Purdue Pharma L.P., Endo Pharmaceuticals Inc, and McNeil-PPC, Inc, respectively. Changing Possibilities in Hemophilia® is a registered trademark owned by Novo Nordisk Health Care AG.SevenSECURE® is a registered trademark of Novo Nordisk Health Care AG.© 2010 Novo Nordisk Printed in the U.S.A. 0910-00001117-1 October 2010

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You are not alone

It can be hard to have a good attitude when your body hurts. The good news is that you are

not alone. Check out ChangingPossibilities-US.com and join The Coalition. It is a group of

people with inhibitors and their caregivers who are empowered to change what is possible in

hemophilia. There are real-life stories about surgery and more. So, become a member by visiting

ChangingPossibilities-US.com.

It is also important to talk with your HTC team. There are a lot of treatment options out there.

Come up with pain management and exercise plans that work for you.

You can locate the nearest HTC by contacting the National Hemophilia Foundation (NHF) at

1-212-328-3700 or hemophilia.org, or by visiting the Centers for Disease Control and Prevention

Web site at https://www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp.

“ I’m looking forward to being able to get around and do things that I can’t do now. I still feel I’ve got lots of energy and lots to contribute.” — Cary Shaw, a 52-year-old man with an inhibitor, on preparing for elective knee

replacement surgery

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