I am new to this site and I have lupus. I found out in april and it has been an up and down hill battle. I am scared that I am having to go thruough so many changes and having to be on so many different medicines and at this poing i really feel like I am on an emotionaly roller coaster. I am really unsure of what lupus really means could someone please help me understand systematic lupus and what to expect :?:
I was going to direct you to several forums, on this site, that explains Lupus, its treatments, its symptoms and sometimes what to expect. But, I heard the fear in your post and decided to give you a bit of information here and, after you've read this, ask you to read the many, many posts in this site that pretty much explains every question that you may have. You will find that there are some very helpful, informative, understanding and caring people here who have devoted a lot of their time providing answers, support and comfort. I hope that, after you've read for a bit, some of your fears are set aside and replaced with the power of knowledge!!
Anyway. Systemic Lupus Erythematosus (or SLE or Lupus) is a chronic (meaning continuos and constant symptoms) and life-long (meaning, you may have relief from symptoms, but the disease never really goes away) disease that is characterized by periods of remission (when the symptoms go away for short periods of time) and relapse (when the symptoms flare up).
Systemic means that the disease can affect virtually every part of the body (skin, muscles, joints, hair, mouth etc.), including the internal organs (heart, lungs, kidneys etc.). Lupus is an auto-immune disorder, which means that the body attacks itself. Some say that it is like the body is having severe allergic reactions to itself. Like I said, it is an auto-immune disorder: Autoimmune diseases are illnesses which occur when the body's tissues are attacked by its own immune system. The immune system is a complex system within the body that is designed to fight infectious agents, for example, bacteria, and other foreign invaders. One of the mechanisms that the immune system uses to fight infections is the production of antibodies. People with lupus produce abnormal antibodies in their blood that target tissues within their own body rather than foreign infectious agents. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. When only the skin is involved, the condition is called discoid lupus. When internal organs are involved, the condition is called systemic lupus erythematosus (SLE).
Now, one of the most bizarre features of this disease is that is affects each of us differently. Therefore, no two lupus patients have the exact same symptoms at the same time. Nor do we have the exact same treatment regimines at the same time. To complicate this even further is the fact that each of our cases of Lupus changes within us, it gets better or worse, we get new symptoms or our symptoms change. So, to tell you what you can expect would be almost impossible. It would depend upon the type of Lupus that you have, what organs (if any) are involved, what your blood work/lab tests indicate and what your symptoms are. These things will determine what type of treatment you receive and which drugs your doctor prescribes.
There are three types of lupus: discoid, systemic, and drug-induced.
DISCOID LUPUS: Is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body's internal organs. Therefore, the ANA test may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer."
In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.
SYSTEMIC LUPUS: is usually more severe than discoid lupus, and can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident ("remission") and other times when the disease becomes more active ("flare"). Most often when people mention "lupus," they are referring to the systemic form of the disease.
DRUG-INDUCED LUPUS: occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). Drug induced lupus is more common in men who are given these drugs more often. However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.
With reference to treatments, here is what the Lupus Foundation of America says: "There is no permanent cure for SLE. The goal of treatment is to relieve symptoms and protect organs by decreasing inflammation and/or the level of autoimmune activity in the body. Many patients with mild symptoms may need no treatment or only intermittent courses of antiinflammatory medications. Those with more serious illness involving damage to internal organ(s) may require high doses of corticosteroids in combination with other medications that suppress the body's immune system.
Patients with SLE need more rest during periods of active disease. Researchers have reported that poor sleep quality was a significant factor in developing fatigue in patients with SLE. These reports emphasize the importance for patients and physicians to address sleep quality and the effect of underlying depression, lack of exercise, and self-care coping strategies on overall health. During these periods, carefully prescribed exercise is still important to maintain muscle tone and range of motion in the joints.
Nonsteroidal antiinflammatory drugs (NSAIDs) are helpful in reducing inflammation and pain in muscles, joints, and other tissues. Examples of NSAIDs include aspirin, ibuprofen (Motrin), naproxen (Naprosyn), and sulindac (Clinoril). Since the individual response to NSAIDs varies among patients, it is common for a doctor to try different NSAIDs to find the most effective one with the fewest side effects. The most common side effects are stomach upset, abdominal pain, ulcers, and even ulcer bleeding. NSAIDs are usually taken with food to reduce side effects. Sometimes, medications that prevent ulcers while taking NSAIDs, such as misoprostol (Cytotec), are given simultaneously.
Corticosteroids are more potent than NSAIDs in reducing inflammation and restoring function when the disease is active. Corticosteroids are particularly helpful when internal organs are involved. Corticosteroids can be given by mouth, injected directly into the joints and other tissues, or administered intravenously. Unfortunately, corticosteroids have serious side effects when given in high doses over prolonged periods, and the doctor will try to monitor the activity of the disease in order to use the lowest doses that are safe. Side effects of corticosteroids include weight gain, thinning of the bones and skin, infection, diabetes, facial puffiness, cataracts, and death (necrosis) of large joints.
Hydroxychloroquine (Plaquenil) is an antimalarial medication found to be particularly effective for SLE patients with fatigue, skin, and joint disease. Side effects include diarrhea, upset stomach, and eye pigment changes. Eye pigment changes are rare but require monitoring by an ophthalmologist (eye specialist) during treatment with Plaquenil. Researchers have found that Plaquenil significantly decreased the frequency of abnormal blood clots in patients with systemic SLE. Moreover, the effect seemed independent of immune suppression, implying that Plaquenil can directly act to prevent the blood clots. This fascinating work highlights an important reason for patients and doctors to consider Plaquenil, especially for those SLE patients who are at some risk for blood clots in veins and arteries, such as those with phospholipid antibodies (cardiolipin antibodies, lupus anticoagulant, and false positive VDRL). This means not only that Plaquenil reduces the chance for reflares of SLE, but it can also be beneficial in 'thinning' the blood to prevent abnormal excessive blood clotting.
For resistant skin disease, other antimalarial drugs, such as chloroquine or quinacrine, are considered, and can be used in combination with hydroxychloroquine. Alternative medications for skin disease include dapsone and retinoic acid (Retin-A). Retin-A is often effective for an uncommon wart-like form of lupus skin disease. For more severe skin disease, immunosuppressive medications are considered as below.
Medications that suppress immunity (immunosuppressive medications) are also called cytotoxic drugs. Immunosuppressive medications are used for treating patients with more severe manifestations of SLE with damage to internal organ(s). Examples of immunosuppressive medications include methotrexate (Rheumatrex, Trexall), azathioprine (Imuran), cyclophosphamide (Cytoxan), chlorambucil (Leukeran), and cyclosporine (Sandimmune). All immunosuppressive medications can seriously depress blood cell counts and increase risks of infection and bleeding. Other side effects are peculiar for each drug. For examples, Rheumatrex can cause liver toxicity, while Sandimmune can impair kidney function.
In SLE patients with serious brain or kidney disease, plasmapheresis is sometimes used to remove antibodies and other immune substances from the blood to suppress immunity. Some SLE patients can develop seriously low platelet levels, thereby increasing the risk of excessive and spontaneous bleeding. Since the spleen is believed to be the major site of platelet destruction, surgical removal of the spleen is sometimes performed to improve platelet levels. Other treatments have included plasmapheresis and the use of male hormones. Plasmapheresis has also been used to remove proteins (cryoglobulins) that can lead to vasculitis. Endstage kidney damage from SLE requires dialysis and/or a kidney transplant."
Please spend some time with us, reading out posts and joining us here with any questions that you may have. We are here to help alleviate some of your fears and hopefully help you deal with this new change in your life!!
Peace and Blessings
I just wanted to welcome you to this site and say I certainly understand how you must be feeling right now. Life is a rollercoaster when you have lupus. Saysusie provided you with the practical information you requested and no one does it better than her so today I only have some emotional support to offer and of course a warm welcome. I think you will find as I have that people on this forum are "the best of the best".
Hope you continue to stay and find what you are looking for. I look forward to getting to know you better and to future posts.
Being diagnosed with lupus is scary, and it can be overwhelming. I've been diagnosed for over 6 years and sometimes it's still overwhelming.
There are several good books available for newly diagnosed lupus patients - some may be available at your local library. Just make sure that any information you get on lupus is up-to-date; a lot of older books were written before they had effective treatments for lupus, so they are pretty depressing.
Remember that everyone's lupus experience is different - don't assume everything you read about is going to happen to you. Although right now there is no cure for lupus, there are many treatments, and hopefully your doctor will find the best ones for you.
This is a great place to ask questions, or just vent if you need to.!
Re: Hi, Sandra
Originally Posted by MARYCAIN
Originally Posted by Saysusie
I want to thank you so very much for the helpful information you send me on SLE .YES I was afarid .I felt all alone but thanks to this web site and all of the careing people I don't feel like I have to go throught this all by myself .I have a new family of FRIENDS. question what about the headaches is this something that SLE people get a lot of.
THANK YOU SO MUCH
looking forward to hearing from you again . sandra1
hi 'beautifulbeluga what a nice name thank you for your emotional support and your warm welcome I also am looking forward to getting to know you better. thanks for your input and for being one of the best of the best
Originally Posted by beautifulbeluga
Re: Hi, Sandra
hi marycain thanks for your input about the books can you give me the names of a few of them.looking forward to hearing form you again thank you so much sandra1
Originally Posted by sandra1
THERE ARE SEVERAL GOOD BOOKS OUT THERE
All the books listed below are good - some better than others. The medical textbooks are obviously very technical. Some of these may be in your local library - the rest you should be able to get through interlibrary loan services, which almost all public libraries do. I'm sure there are a ton of books out there - these are just the ones I'm familiar with. If there is one book I would invest in buying to keep on hand, it's THE LUPUS BOOK, 2nd. ed., by Dr. Daniel Wallace, a lupus specialist - covers symptoms, diagnosis, treatment - all very thorough and readable.
A Delicate Balance: Living Successfully with Chronic Illness
by Susan Milstrey Wells
The Lupus Book: A Guide for Patients and Their Families - revised edition 2005
by Daniel J. Wallace
Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life
by Maureen Pratt, David Hallegua, Daniel J. Wallace
The First Year - Lupus: An Essential Guide for the Newly Diagnosed
by Nancy C. Hanger, Elena Massarotti
New Hope for People with Lupus: Your Friendly, Authoritative Guide to the Latest in Traditional and Complementary Solutions
by Sara J. Henry, Theresa Foy Digeronimo
Living with Lupus: The Complete Guide, Second Edition
by Sheldon Paul Blau, Dodi Schultz
Lupus : Everything You Need to Know
by Robert G. Lahita, Robert H. Phillips
Positive Options for Living with Lupus : Self-Help and Treatment
by Robert H. Phillips, Robert G. Lahita, Barbara Bush
Talking About Lupus: What to Do and How to Cope
by Triona Holden
Lupus - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
by Icon Health Publications
The Language of Water
by Jude Clarke (autobiography written by lupus patient)
But You Don't Look Sick: Living Well With Invisible Chronic Illness (Paperback)
by Joy H. Selak, Steven S. Overman
Coping With Lupus: A Practical Guide to Alleviating the Challenges of Systematic Lupus Erythematosus
by Robert H. Phillips
Coping With Prednisone: (*and Other Cortisone-Related Medicines) : It May Work Miracles, but How Do You Handle the Side Effects
by Eugenia Zukerman (Introduction), Julie R. Ingelfinger
Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness
by Paul J. Donoghue, Mary Elizabeth Siegel
Lupus Handbook for Women : Up-To-Date Information on Understanding and Managing the Disease Which Affects 1 in 500 Women
by Robin Dibner, M.D., and Carol Colman
Coping With Lupus : A Guide to Living With Lupus for You and Your Family
by Robert H. Phillips
Systemic Lupus Erythematosus
by Robert Lahita (medical textbook - not geared toward patients)
Dubois' Lupus Erythematosus
by Daniel J. Wallace (Editor), Bevra Hannahs Hahn (Editor), Franci Quismorio (the original medical textbook on lupus)
A Dictionary for Lupus Patients
Linda K. Rohner (Editor)
Chronically Happy: Joyful Living In Spite Of Chronic Illness (Paperback)
by Lori Hartwell
The Art of Getting Well: Maximizing Health and Well-being When You Have a Chronic Illness (Paperback)
by David Spero, Martin L., M.D. Rossman
Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web
edited by P. F. Anderson and Nancy J. Allee
It is very nice to meet you. I look forward to seeing you on the board often.
I just wanted to let you know that I found "The Lupus Book", 2005 edition, on Ebay for as low as $11.00. It seems everywhere else it is running $23.00 and up. I don't know if you use Ebay, but I am an Ebay junkie, so I always check there for things. I hope that helps.
Talk to ya soon. Take care.
P.S. There were other publications that were on Mary's list too.