Lupus: Support and Survival

Concerns of the Newly Diagnosed
Kevin D. Kerin, M.D.

Being diagnosed with lupus brings on a flood of questions, some of which may be difficult to answer. But do not hesitate to ask your healthcare team. Here are some of the most common questions:

How long can I expect to live with lupus?

Lupus is not the death sentence it was considered early in the 1900's. There is no cure, but treatment and new drugs have established a longer life span for Lupus patients. The five-year survival rate is 90 percent or more and the 10-year survival rate is at least 80 percent.

With optimal care, even patients with heart, lung, kidney or liver involvement will live longer thanks to early detection and better treatment for inflammation, hypertension and infection. Your experience may be difficult to predict because it depends in part on your symptoms and your quality of care. Your prognosis is worse if your kidneys are inflamed or damaged.

Am I infectious?

Lupus is not infectious, although research suggests susceptibility to the disease may be inherited. Your relatives may not "catch" lupus, but they may carry the genes that make them susceptible. Remember there are other factors thought to lead to the disease, including hormonal and environmental factors.

Will lupus affect my sex life?

Fatigue, pain or other symptoms, such as mouth sores, may make a person with lupus feel less attractive or less interested in sex. Medications used to treat lupus may decrease your interest in sex.

You may feel your partner is avoiding you, and your partner may feel rejected or not understand the change in the intimate part of your relationship. Although these feelings may be difficult to discuss, you should talk about them calmly and honestly. Such honesty can lead to increased intimacy as you deal with the problem together.

Your healthcare team may be able to modify medication or advise you regarding lubricants or hormonal creams. Do not, under any circumstances, modify your medications or use any vaginal lubricant without consulting your healthcare team. If intercourse becomes too painful, explore other ways you and your partner can enjoy your sexuality and give each other mutual satisfaction.

Can I have children?

Years ago, doctors used to advise women with lupus not to have children -- largely because these women had a higher-than-normal chance of miscarriage or stillbirth. Pregnancy was also thought to spark lupus flare-ups. But today, many women with lupus do have children. However, there are risks.

Flare-ups are more common during pregnancy and immediately after giving birth. But with close supervision during pregnancy, 50 percent of these pregnancies are completely normal and some 25 percent deliver normal babies prematurely. The remaining 25 percent suffer miscarriages or the death of the unborn baby.

Lupus pregnancies are considered high risk. Thus, a healthcare team that includes a rheumatologist and an obstetrician familiar with high-risk pregnancies should closely supervise the pregnancy and delivery.

At times it may be difficult to differentiate a lupus flare-up from other serious pregnancy problems, such as preeclampsia and eclampsia, which are toxic conditions of late pregnancy. Home delivery is dangerous for these and other reasons. Complications during delivery can be treated, but access to proper equipment and staff is critical.

Lupus flare-ups during pregnancy must be supervised and treated carefully. Women who conceive after months of remission have less likelihood of such flare-ups. Any medications, both prescription and over-the-counter, used to control lupus during pregnancy must be carefully considered for possible toxicity to the mother and fetus. The healthcare team must monitor the mother and fetus frequently and carefully so they can catch problems early.

A small percentage of babies will develop neonatal lupus syndrome. Typically, within two to six months, the baby's body will rid itself of the mother's autoantibodies. Rarely, babies with neonatal lupus will have a serious heart block that leads to arrhythmia. One in three of these babies will die. To correct the defect, a surgeon may implant a pacemaker a few months after birth. Women with lupus should not consider pregnancy until they and their partners have discussed all the risks and costs with their healthcare team.

Can I keep my job?

Fatigue and other symptoms may make it difficult for you to perform as well as you would wish to on the job. If your symptoms are mild, you and your employer may be able to make accommodations so you can continue to work. During a flare-up, you may require a leave of absence until the symptoms subside.

Concerns of the Healthcare Team

As you assess your diagnosis and re-evaluate your life, your healthcare team will be evaluating the options for treatment. Their responsibility is to make the most accurate diagnosis possible based on the information they have received from the examination, case history and laboratory tests. Based on that diagnosis, your caregivers will try to reduce and control the symptoms of the disease.

Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.

Lupus Foundation of America., Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
301-670-9292  800-558-0121

Information gathered from :

Searching for ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online.  LUPIES has been a wonderful gift.  I have learned more from the information I found on the support website from other sufferers of Lupus than I did from my doctor.
Thank you fellow Lupies!   With a special thank you to Deanna ..
 May your days be pain free!

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