I was just diagnosed with lupus?

Question

What can I expect?

I am 24 years old

Answer 1

First off lets dispel any myths that might have been given by the patient who said she has SLE (systemic lupus) and then went on to say that SLE doesn't affect the internal organs like other 'lupus'. SLE is SYSTEMIC which means by definition that it affects the entire body. One with SLE can expect to have many differing symptoms as each persons case presents differently. Some people experience joint pain and muscle weakness others have facial 'butterfly ' and body rashes, some have internal organ involvement such as kidney, heart, liver and brain and some have all the symptoms. The most important thing to remember is that most of these issues can be controlled with medication. Prednisone will help with the inflamation and plaqunil can assist with kidney damage, Cellcept can help with other internal organ involvement and sometimes other chemotherapy drugs may be indicated. Lupus is a disease in which your immune system is overactive and kills good cells as well as the bad which leaves you open to getting infections because your immune system is overworked. Lupus patients are considered immunocompromised. For instance, my wife who was diagnosed with Lupus at 15, was recently bitten by a neighbors cat. Where a person with a normal immune system could just put on some topical antibiodic cream and maybe take some oral antibodics, she spent three days in the hospital receiving IV antibodics because her immune system couldn't fight of the infection.

So what can you expect? You can expect your good days and your bad ones. You'll have days that you're fatigued and days which you feel great. There'll be times when you don't want to get out of bed but you force yourself to go on. You must follow the advice of your doctor and take the medications that they presricbe and keep an open dialogue with them. Remember that you are ultimately responsible for your health care and you need to let the doctor know how certain medications are affecting you or how the Lupus is affecting you, be honest and open. Also it may help to join a support group. There are many out there just go to the Lupus Foundation website and they'll give you a meeting site in your area.

My wife is a dentist. Her Lupus sometimes makes her feel badly but she never ever lets it control her life. She is a beautiful person and has accomplished much in her life inspite of her disease. I wish you the best of luck. If you have any more specific questions please do not hesitate to email us.

Answer 2

I also have lupus. It varies so much from person to person, as I'm sure you know, that it's hard to tell at this point what symptoms you may have or get it the future. Generally, you can expect to have muscle aches most of the time, but these can be controlled several ways. I am relatively young at 41, so I use hot baths twice a day and Ultram. I take Ambien at night to help me sleep well, as good sleep helps the pain to be less severe.

Sometimes there is organ or skin involvement, which is more serious. This happens when your immune system attacks your own body organs and will need to be followed by a specialist.

The advice I would give is to treat your symptoms as well as you can without using narcotics and to save those for when the pain is too much. Asd you will have lupus for the rest of your life, try to use the least invasive and addictiong treatments and medications that you can to save yourself room to move up as the pain does.

Start with easy treatments such as massage, saunas, good sleep hygeine, medication, exercise, etc... You will need to find what works for you in particular.

With luck, your lupus will minimally affect your day-to-day living and you will live a long and healthy life.

Good luck and God bless!

PS - There are many very good books and web sites with all kinds of information the the various aspects of lupus and treatment. Educate yourself as well as you can!

Answer 3

There are different types of lupus. I have systemic lupus which causes circular red rashes on my back and shoulders. Some markings along my hairline on my face too. I must avoid the sun, caffeine and stress. I use a topical cream to eliminate these markings, which seem to occur consistently. I do not take any medications for the lupus. This type, systemic, does not effect my inner organs, or cause arthritis. You will be tired alot.....stay out of the sun between 10-2pm and wear #40 block containing titanium oxide May thru Oct. It's a drag, but could be worse. You didn't mention your age, but mostly lupus affects young women, I however was diagnosed at age 50. Be good to yourself

Answer 4

I don't know much about lupus really but a friend's daughter was diagnosed with this many years ago. There was a time when they thought she would not survive but now (about 17 years later) she is still with us. She has never been a very healthy girl but is now much better than she was. I know that it can be a very painful condition. I'm sure that if you do a google search you would find quite a lot of information, alternatively search here and see if this has been asked before.

Answer 5

Try to get the diagnosis confirmed. Just being ANA (Anti Nuclear Antibodies) positive or DS DNA isn't enough. There are several indicators. You may have a managable immune problem. The steroid treatment many doctors prescribe can have side effects worse than the illness, and may CAUSE some of the symptoms often associated with Lupus. Also, be sure you know whether you may have (SLE is most common).

Answer 6

My old coworker has it u will have a lot of pain... girl just pray and everything will b just fine...

Good Luck

Answer 7

Not sure of your type, Go here; http://www.umm.edu/ency/article/000435.htm
I think this common enough they do well with Treatment and you not need to be worried.