10-07-2009, 08:09 PM
Hi I guess I'm the new girl! I have kinda known I've had lupus on and off for a few years now - I'm 22 now and this was the summer that it all kinda came out and made sure we knew that it was here and here to stay, but I had a heads up, because it runs it my family very strongly, we have only had 3 members in my family that have had it 100% verified as lupus but the more we put the pieces together it is starting to look alot more like 10 of us, so we will see I guess. But I am going up the University of Alabama Birmingham this week to speek to a specialist, UAB is the #8 best Rhuemy hospital in the country so my fingers are crossed!! I'm pretty excited! My appointment is Friday so if anyone has any good ideas on what questions I should ask my doctor please help me I'm racking my brain!
10-08-2009, 05:43 AM
Hello and welcome. Make a list of all your symptoms.Ask about meds.Just hang in there and other members will help you out more.I am sorry you have Lupus and your family members too,but you have found a very caring knowledgeable site,full of loving members who will help you.
Lots of love Amanda.xxxxx
10-08-2009, 01:01 PM
Welcome To Our Family:
Here are some of the most common questions asked after diagnosis:
1) Could any antibiotics or other medications I'm taking be triggering my lupus symptoms?
2) Could another condition be causing my lupus symptoms?
3) Has the disease already damaged my kidneys or other organs?
4) Should I have a bone density test?
5) Should I be taking calcium or other supplements?
6) What are the possible side effects of my lupus drugs?
7) How long will I need to take these lupus drugs?
8) How often should I have checkups?
9) What lifestyle changes do you recommend?
Here are more common questions to ask:
1)How can we be sure that what I have is in fact systemic lupus, and not another form of the disease?
Systemic lupus can affect almost any body part, including the skin. Skin involvement occurs in up to 80 percent of patients. An even larger number of people have cutaneous lupus, which affects only the skin; some types of skin lupus are referred to as ďdiscoidĒ lupus. Certain medications can also induce lupus, which usually passes once the drug is stopped. While there is no single test for systemic lupus, there are a number of signs and symptoms that, together, lead to a diagnosis of systemic lupus.
Is skin-only lupus likely to develop into systemic lupus, and is there anything I can do stop this from happening?
Skin-only (discoid) lupus typically appears as a neck or scalp rash or a butterfly-shaped malar rash across the nose and cheeks. While it is chronic and can cause scarring or hair loss, the good news is that itís not organ- or life-threatening, as systemic lupus can be. Still, it can be very hard to deal with the changes in appearance. And for reasons that are still unclear, about one in 10 people with discoid lupus eventually develops the more serious systemic disease.
2)Will I always have this disease?
Lupus is a chronic disease and rarely disappears altogether. But every person has a different course, and cases do go into remission for long stretches. With vigilance and quality care, many people with lupus today can live relatively normal lives.
What did I do to get this disease? Is it contagious?
A person canít catch lupus from someone else. The current thinking is that a mix of hormones and elements in the environment converge to spark lupus in a person who has genes that make him or her susceptible to it.
3)What can I do to avoid flare-ups?
Triggers for disease flare-ups vary widely and in many cases canít be anticipated at all. Many people do find, however, that it helps to avoid being in the sun and to wear sunblock daily, even in winter. Itís also important to get regular sleep, avoid smoking, consume a heart-healthy, low-sodium diet, exercise, find stress relief and take sensible measures to avoid bacterial and viral infections.
4)What symptoms or other problems should prompt me to call a doctor?
Lupus and the medicines used to treat it pose the risk of many different types of complications that require immediate care, including heart attacks, kidney failure and strokes. Familiarize yourself with potential problems, and call the doctor if signs or symptoms develop. Fluid retention, difficulty speaking or moving a part of the body, chest pain, increased joint pain, a new rash and infection are examples of developments that you should act on quickly.
5)More than a third of people with lupus develop kidney problems. Will I?
What doctors refer to as lupus nephritis, or inflammation of the kidneys, can happen in anyone with lupus. If left untreated, it can cause very serious loss of kidney function. In addition to urine and other tests to assess how the kidneys are doing, you and your doctor should watch for such signs and symptoms as unexpected weight gain; dark urine; swelling around the eyes, ankles, fingers or legs; and high blood pressure.
6) Is there anything I can do to prevent heart problems?
Lupus can raise the risk of heart disease, even in young patients who donít have other risk factors, like a fatty diet or family members with heart problems. Researchers are studying this complication intensively. Several studies, including the APPLE trial in kids, are under way to determine whether taking cholesterol-lowering statin drugs can lower the risk of heart problems in people with lupus.
7)Are my children, siblings and other blood relatives at risk for lupus?
While most people with lupus do not have relatives with the disease, there is a genetic component to it that researchers are just now starting to untangle. About 20 percent of people with lupus have a parent or sibling who has the disease (or will develop it). About 5 percent of the children born to a parent with lupus will develop the illness. But while most experts say that genes play a crucial role in the development of lupus, they also contend that a trigger in the environment almost certainly is at play in prompting its progression.
8) Iím considering getting pregnant. Is that a concern?
Women with lupus face multiple risks during pregnancies, including infections and blood clots. Since more successful pregnancies occur during remissions, experts recommend that women wait to conceive until their disease has been inactive for at least six months. A doctor should help in making this decision.
9) Is it O.K. to take oral contraceptives?
Oral contraceptives are usually safe for women with lupus, as long as their disease is inactive or stable, a New England Journal of Medicine study suggests. Still, women who have been newly diagnosed with lupus and those who are at high risk for blood clots should avoid these drugs.
10) Is it O.K. to take Nsaid pain relievers?
Many people with lupus take nonsteroidal anti-inflammatory drugs like ibuprofen, naproxen or prescription pills to relieve aches and pains. All carry general risks, like gastrointestinal bleeding. Because they can also cause fluid retention and reduce kidney function, experts generally recommend that patients with lupus who take Nsaids long term have their liver and kidney functions tested every three to four months.
I hope that this has been helpful to you.
Peace and Blessings
10-08-2009, 04:51 PM
I don't have anything to add to SaySusie's words of wisdom except Welcome Aboard!
10-08-2009, 07:37 PM
hi theonlykimi, welcome to our family....as you can already tell, whatever you need to know, someone here will be able to help you. UAB is a great hospital...i am so glad that you are going there to see a specialist. Let me know what you think about them. Saysusie gave you a complete list of questions to take with you, i would also recommend that you browse around this site, and read about the different symptoms that we all suffer with....then make a list of any of these that you have ever had...Lupus symptoms can come and go and change places, so even if you don't presently suffere with them, include them on your list. best of luck to you...keep us posted.