I've been living with gout for quite a long time, 17 years. There's the physical pain and then there's the emotional pain, and the emotional pain is something that lingers. The shame that I felt of what I looked like with my hands and my elbows. All the doctors that I saw that misdiagnosed me and all they did was treat my symptoms. When KRYSTEXXA came along for me, little by little, I saw the results and I began to feel better.
I wanted to share how KRYSTEXXA helped me. Most of the patients that I've been mentoring are considering taking KRYSTEXXA. They have a lot of questions; there's a lot of unknown. Occasionally I'll talk to a patient who's already on KRYSTEXXA and they don't like the results right away, and so they think about giving it up. Most of the patients with whom I've spoken are looking for that connection with somebody who really understands. Sometimes my conversation with the mentees does get emotional, as soon as I start talking about ... Say, "All the knuckles on my hand were swollen, I couldn't wear my wedding ring for 8 years, and I finally got that on." That's a strong connection.
For the past 20 years I've been battling an out-of-control experience with gout. It's crippling, both emotionally and physically. I was introduced to KRYSTEXXA when the doctor said that the gout was an enzyme issue. So, I Googled enzyme therapy for gout. That's how I found KRYSTEXXA. The first treatment I had with KRYSTEXXA, I came out feeling magnificent, but after a few days, it became the same old, same old pain in the joints, and I was really concerned about that. On the website, it said, "We have a peer mentor program," and that's when I was able to connect via telephone with Ed.
When I first talked to Tom, I began to share some of my story. The first 2 months of my treatment, it increased the number of flares that I had, but then slowly the pain began to subside.
That really helped me just to go, "Relax, I'm going to get through this." It was just a blessing, really. He continued guiding me through what to expect with KRYSTEXXA. I felt a sense of clarity, a sense of purpose, and a sense of direction to continue with the process. Ed.
Tom. And that takes courage, I would have had a hard time even reaching out to somebody else in the same manner. Today is the first time I've ever met a patient that I have been mentor for. I'm talking to a real person that had real pain and has real struggle, and I identify with that.
... say just somebody else's experience really helped me, but it really did. When I first met Ed in person, it just uplifted me, and he's a really great man. Being able to talk with a peer mentor who was on the other side of chronic gout meant a lot to me.
Reconnecting with other people is going to put you into situations which is going to give you energy and life back again.
When I talk to a patient in the mentor program, I feel like that I'm investing a part of me in them. I had shirts, I had polar shirts made with ... They would come down to here to cover up my elbows. One of the amazing things about this mentor program is that one stranger reaches out to another and began to create a bond that is totally different than the bond they have with their spouse, their family members, their doctor. My purpose in life is to make life better for other people. I feel like I'm achieving some of what I'm here for.
KRYSTEXXA® (pegloticase) is a prescription medicine used in adults to help reduce the signs and symptoms of gout that are not controlled by other treatments.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about KRYSTEXXA?
Serious allergic reactions may happen in some patients who receive KRYSTEXXA. These allergic reactions can be life threatening and usually happen within 2 hours of the infusion.
KRYSTEXXA should be given to you by a doctor or nurse in a healthcare setting where serious allergic reactions can be treated. Your doctor or nurse should watch you for any signs of a serious allergic reaction during and after your treatment with KRYSTEXXA.
Tell your doctor or nurse right away if you have any of these symptoms during or after your treatment with KRYSTEXXA:
- Wheezing, shortness of breath, cough, chest tightness, chest pain, or trouble breathing
- Dizziness, fainting, fast or weak heartbeat, or feeling nervous
- Reddening of the face, itching, hives, rash, or feeling warm
- Swelling of the throat or tongue, throat tightness, hoarse voice, or trouble swallowing
Who should not receive KRYSTEXXA?
Do not receive KRYSTEXXA if you have a rare blood problem called glucose 6-phosphatedehydrogenase (G6PD) deficiency, or favism. Your doctor should test you for G6PD before you start KRYSTEXXA.
KRYSTEXXA is not recommended if you have high levels of uric acid without a history of gout.
Before you receive KRYSTEXXA, tell your doctor if you:
- Know you have G6PD deficiency
- Ever had any heart problems or high blood pressure
- Are pregnant or planning to become pregnant. It is not known if KRYSTEXXA will harm your unborn baby
- Are breastfeeding or plan to breastfeed. It is not known if KRYSTEXXA passes into your breast milk
Tell your doctor about all the medicines you take. Do not take any other uric acid–lowering drug, such as allopurinol or febuxostat (Uloric®), while taking KRYSTEXXA.
Prior to your treatment with KRYSTEXXA, your doctor may give you medicine to help reduce your chance of getting a reaction. Take these medicines as directed by your doctor or nurse. Your doctor will also test your uric acid levels prior to each treatment to monitor your response to KRYSTEXXA.
What are the possible side effects of KRYSTEXXA?
Please review important information section above. The most common side effects in patients taking KRYSTEXXA were gout flare-ups or attacks, allergic reactions, nausea, bruising, sore throat, constipation, chest pain, and vomiting.
This is not a complete list of all possible side effects. Tell your doctor or treatment team if you have any side effect that bothers you or that does not go away.
Please see the Medication Guide and Prescribing Information for more information.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call the FDA at 1-800-FDA-1088.