6 posts tagged “lupus awareness”

Age-by-age guide to navigating reproductive health with lupus

Posted June 19th, 2018 by

Lupus can affect your reproductive health in a variety of ways throughout your life and can raise the risks of complications during pregnancy. Thanks to medical advances, the chances of having a safe pregnancy have improved — the key is careful planning.

Check out this timeline of gynecological and reproductive health considerations when you have lupus, plus pointers if you’re considering getting pregnant.

Teens

Puberty and childhood treatments – The stress that lupus causes to your body can delay puberty (join PatientsLikeMe and log in to see our recent forum discussion on lupus and period problems). If you had lupus earlier on in life, you may want to ask your doctor about how different treatments you’ve had could affect your reproductive possibilities. Teens and young women should also talk with their doctor about contraception for those with lupus (more on that below), especially because some lupus treatments can harm a fetus.

HPV vaccine and cervical cancer prevention – The Centers for Disease Control and Prevention (CDC) recommends that all girls get the human papillomavirus (HPV) vaccine when they are 11 or 12 years old to protect them against cervical cancer. The vaccine is considered safe for people with a suppressed immune system, according to Lupus.org. But it’s recommended that people with lupus get vaccinated while on a lower dose of steroids for a better vaccine response.

20s and 30s

Pap tests – Although general guidelines call for women (ages 21 to 65) to have a pap smear every three years, women with lupus should have a gynecology exam with a pap test annually. This is because lupus meds can cause you to be immunocompromised, increasing the risk for abnormal paps and possibly cervical cancer down the road.

Contraception – If you have lupus, using contraception can help prevent unplanned pregnancy, but it’s important to talk with doctor about the right form of birth control for you and your case of lupus. For example, if you have antiphospholipid antibodies, which increase the risk of blood clots, you might need to avoid certain kinds of birth control pills. Some women choose a long-acting contraception device like an IUD.

Planning for pregnancy – We know much more now about how to manage lupus to achieve a healthy pregnancy than we did decades ago. Consider these pointers:

  • Think ahead and try to avoid getting pregnant during a lupus flare-up. Women who become pregnant in remission generally have better outcomes.
  • Talk with a rheumatologist and maternal-fetal medicine specialist at least three to six months before you plan to get pregnant so they can help you adjust or switch your medications to protect a developing baby, and to monitor you every step of the way—including post-pregnancy, during breastfeeding.
  • Consider the possible complications and risks, but keep in mind that many women with lupus are able to get pregnant and deliver healthy babies. MotherToBaby.org says that lupus increases the chances of complications like infections, high blood pressure, and serious conditions like preeclampsia and HELLP Syndrome. Having other health issues including lupus nephritis or kidney disease, high blood pressure, high antibody counts or blood clots could increase the risks.
  • Choose a hospital with a NICU just in case. Lupus can raise chances of miscarriage or early delivery, as well as infant health problems. Read more about lupus, pregnancy and newborn health here. If you’re feeling anxious about your health or your unborn child’s, explore stories of women with lupus who’ve had babies (like one woman recently featured in SELF magazine) to learn about their experiences.

Finding support for fertility issues – There are many ways to build a family. You are not alone. You may find comfort and wisdom talking with other women, such as at Resolve, an infertility site with links to local groups, or PatientsLikeMe members who’ve dealt with fertility issues (see “On PatientsLikeMe” below).

40s, 50s and beyond

Bone health – Taking corticosteroids can affect your bone strength, so remind your doctor to keep tabs on your bone density. Regular, weight-bearing exercise can help you strong. Your doctor may recommend extra vitamin D and calcium supplements.

Menopause – Lupus can cause early menopause (which can also affect your bones). “The good news for women in their 50s is that menopause may lead to a decrease in some lupus activity, although some studies have disputed this,” according to Lupus.org. “As women with lupus move through their 40s and 50s and beyond they need to be sure to get regular mammograms and Pap tests, especially if they have had long-term treatment with immunosuppressive agents.”

On PatientsLikeMe

Members have shared about their experiences with pregnancy and women’s health issues — join the community and sign in see what others with lupus have said about:

Any questions or anything to add based on your experiences? Add a comment here or in this forum discussion.

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Member Christine’s Instagram takeover for World Lupus Day

Posted May 11th, 2018 by

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!)

Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way.

Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure.

“You make a living by what you get. You make a life by what you give.” —Winston Churchill

Finding the right treatment for lupus can be difficult. Most patients, myself included, will try a number of different medications in order to achieve remission. These medications, while they may help, can also have very toxic side effects. In fact, some of the side effects can be worse than the disease itself. I have had three drugs that have caused significant damage to my body. I now have hydroxychloroquine retinopathy, avascular necrosis and toxic encephalopathy as a result. Though scary, it is a reality for so many patients.

Despite the setbacks, the experience has taught me how important it is to advocate for yourself. As a patient, it’s your duty and your right to do your research. If you are uncomfortable with a drug or the side effects are too severe, make sure to speak with your doctor. Remember, no one knows your body better than you do.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” —Maya Angelou

Dealing with an illness isn’t easy, and going through it alone can make things even more difficult. Support is one of the most important aspects of dealing with any disease, including lupus. While family and friends can be a crucial part of your support system, I’ve found that it helps to seek advice from others not involved in your immediate circle.

Many people frown upon support groups as a place where people go to complain and commiserate, but most support groups are nothing like that. Finding other patients to connect with is an amazing experience. To be able to talk to someone who knows exactly what you’re going through makes all the difference in the world.

My support group is not just a support group — they are my confidants, my motivation, my inspiration and, most importantly, my friends. Regardless of your condition, I’d encourage you to reach out to other patients, both online and in person. There is so much that can be learned and shared among us.

“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” —Misty Copeland

With beauty playing such a pivotal role in our society, women are often criticized for changes in their appearance. About 90% of lupus patients are women, which makes dealing with the disease even more difficult since lupus can wreak havoc on both the body and mind.

The photos above were taken only one year apart and that adorable little girl is now a teenager. I had been on high-dose steroids and put on 70 pounds within the first month. I was unrecognizable and my self-esteem gone. At my heaviest, I weighed in at 220 pounds, all due to medication.

It’s not easy to go through the physical changes of the disease, but I’ve always found the light at the end of the tunnel. Looking back, I wish I had taken more pictures during that time. I missed out on so many memories because I couldn’t stand the way I looked. It took a while but I’ve learned to embrace myself, regardless of my weight.

“Beauty begins the moment you decide to be yourself.” —Coco Chanel

Recently, a friend of mine from high school passed away. My heart breaks for his family and wife. His death has brought to light the question of our mortality. As someone with a serious chronic illness, I have been told more times than not that my chances of survival are slim and I’ve even had my last rites read to me.

The thought of death is often far more real for those of us with chronic conditions. It looms in your mind and forces you to question the things in life that you thought were once so important. It’s a valid fear and a harsh reality, often dismissed by others. My post is not meant to be depressing, but rather to encourage you to live your life to the fullest, be happy and help others. With that, I’ll leave you with a final quote. Thanks for following along!

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” —Mark Twain

Join PatientsLikeMe today to connect with Christine and thousands of others living with lupus.

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