2018-04-16T09:01:00
(BPT) – By: Carla Kienast
My RA Diagnosis
Most of my life, I was consumed by my career, which I’m sure many of you can relate to. When I wasn’t working, I loved traveling, going to the movies, reading, scuba diving, hiking, snowmobiling and camping. Oh, and I wrote a paperback novel with no socially redeeming value, that actually won a couple of awards. Among getting older and experiencing various life changes, there is one event that truly made me put my life’s work and hobbies on hold and that was when I was diagnosed with moderate to severe rheumatoid arthritis (RA) in July 2008.
Like many people living with a chronic illness, I had what were probably early symptoms such as joint pain and swelling. I lived like this for several years until my orthopedic surgeon referred me to a rheumatologist. While sitting in the waiting room at the rheumatologist’s office that day, I didn’t have a ton of concerns because I didn’t know much about the disease. I didn’t have a handle on what was happening to my body or how my life was going to need to change.
After doing some research, I realized the magnitude of what I was facing. There is a lot of “worst-case information” out there related to RA, so of course I was terrified. One of my most jolting moments was when I measured the doorways in my house to see if I could get a wheelchair through because I was convinced that at some point I would be using one.
Finding “Dr. Right”
The path to finding the right rheumatologist for me isn’t always an easy one. I “fired” my first rheumatologist about 6 months after I was diagnosed. While he was a great clinician, he wasn’t really a good fit for me.
I’ve been with my [new] rheumatologist since February 2009 and we have a great relationship! I trust her as a doctor and she trusts me as a patient. I find that an important aspect of maintaining a good relationship with your doctor is being an informed and empowered patient. I like to understand what my treatment options are as well as their side effects and to be proactive in discussing them with my physician so we can have meaningful discussions about the medications she prescribes. I feel like I’m part of the decision-making process with my current rheumatologist, which is one of the major reasons I stay with her. She is also supportive of the things I want to do even though I have RA.
Finding a Treatment
Overall, my road to diagnosis and finding a treatment was a long one. SIMPONI ARIA® was approved for moderate to severe RA in 2013. I researched it and asked my rheumatologist about it. We determined that it would be a good choice to help relieve my symptoms and the dosing schedule would fit my schedule. So far, SIMPONI ARIA® has helped improve my symptoms, and I am able to do the things I need to do with less difficulty.
SELECTED IMPORTANT SAFETY INFORMATION
SIMPONI ARIA® (golimumab) can lower your ability to fight infections. Serious and sometimes fatal events may occur. There have been reports of serious infections including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that have spread throughout the body. Other possible serious side effects may include lymphoma, a rare and fatal cancer called hepatosplenic T-cell lymphoma, skin cancer, other cancers, hepatitis B, heart failure, nervous system problems, lupus-like symptoms, or allergic reactions. To learn more about these and other risks, please read the Important Safety Information on pages 3-5, and the Medication Guide, and talk with your doctor.
My Words of RA Wisdom
Never give up. I know people who have been on the same treatment plan for years and are doing well; however, I went through a lot before finding my current treatment. Not giving up may sound trite, but for me, it’s not. In both my professional and personal lives, I’ve had to learn when to cut my losses; however, when it comes to RA, there is no “cutting your losses” and walking away — you’re in it for life and you have to do your best to get through it with the mindset that you have RA, it doesn’t have you.
Nothing is worse than nothing. RA is a serious disease and it takes working closely with your doctor to find the right treatment for you. Doing nothing is the worst possible option because the joint damage RA can do is irreversible.
Show up when you’d rather lie down. I think there are a lot of people living with RA and other chronic conditions who’d rather stay in bed when they’re experiencing joint pain and morning stiffness. Although starting your day can be a slow process, the pros of getting out of bed and showing up can sometimes outweigh the cons.
Keep on hoping. It can take months, if not years, of working with your doctor to find the right treatment to manage your symptoms, which can be profoundly difficult. In the meantime, try to wake up each morning with hope.
My Life Today and Looking Ahead
Today, while having moderate to severe RA, I am able to travel, I can go for a walk with less difficulty, and I can contribute to the RA community. I’ll never be the person I was before my RA days, but I’m as close as I’ve been in a long time. I hope that people see me as an example that even with all the challenges that come with having a chronic disease, you may still be able to do the things you need to do with less difficulty.
If there is one thing to remember from reading this story, it’s that everyone’s journey is different. I’ve learned that different parts of my journey resonate with different people. With the many treatments available today like SIMPONI ARIA®, there’s more of a reason for positivity than ever before!
To hear more from Carla Kienast, please visit her blog at Carla’s Corner.
For more information about SIMPONI ARIA® or Janssen Biotech, Inc., please visit SIMPONIARIA.COM or Janssen.com/us. In October 2017, SIMPONI ARIA® was approved by the U.S. FDA for the treatment of adult patients living with active psoriatic arthritis or active ankylosing spondylitis – read more here. SIMPONI ARIA® is for adults with moderate to severe rheumatoid arthritis taken with methotrexate, active psoriatic arthritis (PsA), and active ankylosing spondylitis (AS).
IMPORTANT SAFETY INFORMATION
SERIOUS INFECTIONS
SIMPONI ARIA® (golimumab) is a prescription medicine. SIMPONI ARIA® can lower your ability to fight infections. There are reports of serious infections caused by bacteria, fungi, or viruses that have spread throughout the body, including tuberculosis (TB) and histoplasmosis. Some of these infections have been fatal. Your doctor will test you for TB before starting SIMPONI ARIA® and will closely monitor you for signs of TB during treatment. Tell your doctor if you have been in close contact with people with TB. Tell your doctor if you have been in a region (such as the Ohio and Mississippi River Valleys and the Southwest) where certain fungal infections like histoplasmosis or coccidioidomycosis are common.
You should not receive SIMPONI ARIA® if you have any kind of infection. Tell your doctor if you are prone to or have a history of infections or have diabetes, HIV or a weak immune system.
You should also tell your doctor if you are currently being treated for an infection or if you have or develop any signs of an infection such as:
- fever, sweat, or chills
- muscle aches
- cough
- shortness of breath
- blood in phlegm
- weight loss
- warm, red, or painful skin or sores on your body
- diarrhea or stomach pain
- burning when you urinate or urinate more than normal
- feel very tired
Your doctor will examine you for TB and perform a test to see if you have TB. If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with SIMPONI ARIA® and during treatment with SIMPONI ARIA®. Even if your TB test is negative, your doctor should carefully monitor you for TB infections while you are taking SIMPONI ARIA®. People who had a negative TB skin test before receiving SIMPONI ARIA® have developed active TB. Tell your doctor if you have any of the following symptoms while taking or after taking SIMPONI ARIA®:
- cough that does not go away
- low grade fever
- weight loss
- loss of body fat and muscle (wasting)
CANCER
Unusual cancers have been reported in children and teenage patients taking Tumor Necrosis Factor (TNF)-blocker medicines. For children and adults receiving TNF blockers, including SIMPONI ARIA®, the chances for getting lymphoma or other cancers may increase. Hepatosplenic T-cell lymphoma, a rare and fatal lymphoma, has occurred mostly in teenage or young adult males with Crohn’s disease or ulcerative colitis who were taking a TNF blocker with azathioprine or 6-mercaptopurine. You should tell your doctor if you have had or develop lymphoma or other cancers.
Some people treated with SIMPONI ARIA® developed skin cancer. Tell your doctor if any changes in the appearance of your skin or growths on your skin occur during or after your treatment with SIMPONI ARIA®. Your doctor should periodically examine your skin, especially if you have a history of skin cancer.
USE WITH OTHER DRUGS
Tell your doctor about all the medications you take including ORENCIA® (abatacept), KINERET® (anakinra), ACTEMRA® (tocilizumab), RITUXAN® (rituximab), or another TNF blocker, or if you are scheduled to or recently received a vaccine. People receiving SIMPONI ARIA® should not receive live vaccines or treatment with a weakened bacteria (such as BCG for bladder cancer).
HEPATITIS B INFECTION
Reactivation of hepatitis B virus has been reported in patients who are carriers of this virus and are receiving TNF-blocker medicines, such as SIMPONI ARIA®. Some of these cases have been fatal. Your doctor should do blood tests before and after you start treatment with SIMPONI ARIA®. Tell your doctor if you know or think you may be a carrier of hepatitis B virus or if you experience signs of hepatitis B infection, such as:
- feel very tired
- dark urine
- skin or eyes look yellow
- little or no appetite
- vomiting
- muscle aches
- clay-colored bowel movements
- fever
- chills
- stomach discomfort
- skin rash
HEART FAILURE
Heart failure can occur or get worse in people who use TNF blockers, including SIMPONI ARIA®. If you develop new or worsening heart failure with SIMPONI ARIA®, you may need treatment in a hospital, and it may result in death. Your doctor will closely monitor you if you have heart failure. Tell your doctor right away if you get new or worsening symptoms of heart failure like shortness of breath, swelling of your lower legs or feet, or sudden weight gain.
NERVOUS SYSTEM PROBLEMS
Rarely, people using TNF blockers, including SIMPONI ARIA®, can have nervous system problems such as multiple sclerosis or Guillain-Barré syndrome. Tell your doctor right away if you have symptoms like vision changes, weakness in your arms or legs, or numbness or tingling in any part of your body.
IMMUNE SYSTEM PROBLEMS
Rarely, people using TNF blockers have developed lupus-like symptoms. Tell your doctor if you have any symptoms such as a rash on your cheeks or other parts of the body, sensitivity to the sun, new joint or muscle pain, becoming very tired, chest pain or shortness of breath, swelling of the feet, ankles or legs.
LIVER PROBLEMS
Serious liver problems can happen in people using TNF blockers, including SIMPONI ARIA®. Contact your doctor immediately if you develop symptoms such as feeling very tired, skin or eyes look yellow, poor appetite or vomiting, or pain on the right side of your stomach.
BLOOD PROBLEMS
Low blood counts have been seen with people using TNF blockers, including SIMPONI ARIA®. If this occurs, your body may not make enough blood cells to help fight infections or help stop bleeding. Your doctor will check your blood counts before and during treatment. Tell your doctor if you have signs such as fever, bruising, bleeding easily, or paleness.
ALLERGIC REACTIONS
Allergic reactions can happen in people who use TNF-blocker medicines, including SIMPONI ARIA®. Tell your doctor if you have any symptoms of an allergic reaction while receiving SIMPONI ARIA® such as hives, swollen face, breathing trouble, or chest pain. Some reactions can be serious and life-threatening.
OTHER CONSIDERATIONS TO TELL YOUR DOCTOR
Tell your doctor if you have psoriasis.
Tell your doctor if you are pregnant, planning to become pregnant, are breastfeeding, or plan to breastfeed, or have a baby and received SIMPONI ARIA® during pregnancy. Tell your baby’s doctor before your baby receives any vaccine because of an increased risk of infection for up to 6 months after birth.
COMMON SIDE EFFECTS
The most common side effects of SIMPONI ARIA® include: upper respiratory infection, abnormal liver tests, decreased blood cells that fight infection, viral infections, bronchitis, high blood pressure, and rash.
Please read the full Prescribing Information and Medication Guide for SIMPONI ARIA® and discuss any questions you have with your doctor.
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.
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