Concerns of the Newly Diagnosed

[Guest guest]

Concerns of the Newly Diagnosed

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.

Hugs,

Deanna

LUPUS Serenity

Prayer...

Lord, grant me the serenity to accept the things I cannot

change, the courage to change the things I can, and the wisdom to hide the

bodies of doctors I shot when they said, You're perfectly healthy, it's all in

your head "