Karen’s story

KAREN: Hi, my name is Karen. I am from Redding, Connecticut, and I have XLH.

I was diagnosed when I was two and a half. My parents went to multiple pediatricians who all said that I was totally fine and that I would grow out of the leg bowing. Until finally, my father took me into a doctor who knew what I had and directed us to an endocrinologist.

When I was younger, I definitely experienced the waddling gait. I had some fatigue. I was a little bit knock-kneed.

I was medicated from the age of about three until I was 18. I did stop medication for about four years. I was a college kid and, you know, wasn’t really paying attention.

It didn’t occur to me that going off of treatment could potentially have any side effects.

I was more concerned with grades and having a good time and seeing bands.

I turned 30 and it was like a switch flipped. Instead of being able to go out, you know, work all day and then go out with my friends after work, I was finding myself sitting in baths for hours and hours just to find some relief long enough to fall asleep.

It's a disease that, yes, is a metabolic bone disorder, but it—it controls your whole life.

I started CRYSVITA July 10th of 2018.

My phosphorus levels have consistently been dropping over the last five years.

On CRYSVITA they’ve stayed exactly level, so they’re not going down anymore.

The fact that I put stress fractures in my hip in February 2013, was told that they’d never heal because I had the audacity to get the mail on a Tuesday, so my hip splintered. The fact that it’s showing signs of healing for the first time in seven years, it wouldn’t have happened without CRYSVITA.

The kids now that have the opportunity to take CRYSVITA for the very first time and don’t have to experience what we did, what my generation did, what the generation before me did.

There are definitely hard times with this disease, but it's your friends and family that keep you positive.

I’ve had a few side effects with CRYSVITA. I’ve had some rashes, but I understand that that's pretty common and we’re treating that with medication. I have experienced hyperparathyroidism, but I’ve had that my entire life, and we are treating that with medication.

Connecting with other people that have XLH has been paramount for me.

And having real, honest dialogue about what the disease has made, you know, impossible or possible for them; what the disease means for them and their family; how we can get around it on a daily basis, and how they stay positive, has been extremely, extremely helpful for me. Without a community, I don’t know where I would be.

What is CRYSVITA?

CRYSVITA is a prescription medicine used to treat adults and children 6 months of age and older with X-linked hypophosphatemia (XLH).

Important Safety Information

You should not take CRYSVITA if:

• You take an oral phosphate supplement and/or a specific form of vitamin D supplement (such as calcitriol, paricalcitol, doxercalciferol, calcifediol).
• Your phosphorus levels from a blood sample are within or above the normal range for age.
• You have kidney problems.

What is the most important information you should know about CRYSVITA?

• Some patients developed allergic reactions (e.g., rash and hives) while taking CRYSVITA. Your doctor will monitor you for symptoms of an allergic reaction while you are taking CRYSVITA. Your treatment may need to be discontinued for serious allergic reactions.
• High levels of phosphorus in the blood have been reported in some patients taking CRYSVITA. This may be related to a risk of high calcium levels in the kidneys. Your doctor will collect blood samples to monitor your levels. If you are already taking CRYSVITA, dose interruption and/or dose reduction may be required based on your serum phosphorus levels.
• High levels of calcium in the blood have been reported in patients taking CRYSVITA. The risk is greater in patients with pre-existing hyperparathyroidism (overactive parathyroid glands), for those who are unable to move for extended periods of time, become dehydrated, have high vitamin D levels, or have kidney issues. If you are at greater risk, your doctor will monitor your blood calcium and parathyroid hormone levels before you start and while taking CRYSVITA. If you develop high levels of blood calcium, your doctor may need to stop your treatment until it is adequately managed.
• Administration of CRYSVITA may result in reactions at the injection site, such as hives, reddening of the skin, rash, swelling, bruising, pain, severe itching of the skin, and collection of blood outside of a blood vessel (i.e., hematoma). Call your doctor if you develop an injection site reaction. CRYSVITA may be discontinued if severe injection site reactions occur.

What are the possible side effects of CRYSVITA?

• Adverse reactions that were seen in children with XLH are:
  • Fever
  • Injection site reaction
  • Cough
  • Vomiting
  • Pain in arms and legs
  • Headache
  • Tooth abscess
  • Dental cavities
  • Diarrhea
  • Decreased vitamin D levels
  • Toothache
  • Constipation
  • Muscle pain
  • Rash
  • Dizziness
  • Nausea
• Adverse reactions that were seen in adults with XLH are:
  • Back pain
  • Headache
  • Tooth infection
  • Restless legs syndrome
  • Decreased vitamin D levels
  • Dizziness
  • Constipation
  • Muscle spasms
  • Phosphorus levels increased in the blood
• Narrowing of the spaces within the spine is common in adults with XLH, and pressure on the spinal cord has been reported in adults taking CRYSVITA. It is not known if taking CRYSVITA worsens the narrowing of the spaces within the spine or the pressure on the spinal cord.

Before taking CRYSVITA, tell your doctor about all of your medications (including supplements) and medical conditions, including if you: 

• Are taking oral phosphate and/or active vitamin D (such as calcitriol, paricalcitol, doxercalciferol, calcifediol).
• Are pregnant, think you may be pregnant, or plan to become pregnant. There is not enough experience to know if CRYSVITA may harm your unborn baby. Report pregnancies to the Kyowa Kirin, Inc. Adverse Event reporting line at 1-844-768-3544.
• Are breastfeeding or plan to breastfeed. There is not enough experience to know if CRYSVITA passes into your breast milk. Talk with your doctor about the best way to feed your baby while you receive CRYSVITA.

While taking CRYSVITA, tell your doctor if you experience: 

• An allergic reaction such as rash or hives 
• A rash, swelling, bruising, or other reaction at the injection site 
• New or worsening restless legs syndrome 

These are not all the possible side effects of CRYSVITA. Call your doctor for medical advice about side effects. 

You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Kyowa Kirin, Inc. at 1-844-768-3544.

For important risk and use information, please see the full Prescribing Information for CRYSVITA.