View Full Version : Im new to the site:)

07-05-2011, 05:02 PM
Hello my name is cecilia i was recently diagnosed with systemic lupus. I still have many unanswered questions and thought this would be a good place to start. I look forward to meeting new people.

07-05-2011, 05:28 PM
Hello! Fire away with questions; we all learn from each other

07-05-2011, 05:44 PM
Hi Cecille, what a great name. Welcome to our great family. Yes we all help each other here. I think you will find this a very warm knowledgeable place to find answers and a lot of validation that is so needed ! So glad to meet you. You can post questions right away and look through all the posts. Have fun along the way as some of these folks are real characters :)

07-05-2011, 05:54 PM
Hi Cecille, what a great name. Welcome to our great family. Yes we all help each other here. I think you will find this a very warm knowledgeable place to find answers and a lot of validation that is so needed ! So glad to meet you. You can post questions right away and look through all the posts. Have fun along the way as some of these folks are real characters :)

Yes welcome and you just met my favorite character - she's a real angel.

We will all try to help you gather the information that you're looking for. Read the threads. Especially the stickies. The info is there. Ask your questions

Again. Welcome to our family

07-05-2011, 08:11 PM
Hi Cecilia,
Welcome to WHL. As Nonna said, read the threads and the stickies. You will learn a lot. Feel free to jump into any thread or to start a new one to ask questions.
We have some people here with lots of experience and others who are great at research, so most questions can be answered fairly easily.

07-05-2011, 08:16 PM
Hi Cecillia! First let me welcome you to WHL. We are so glad that you found us. Please make yourself at home. Look through our old threads or start new ones if you have questions. I look forward to getting to know you and we are glad to have you as a part of our WHL family

07-05-2011, 09:43 PM
may i also say welcome


07-05-2011, 10:26 PM
Welcome to the Forum!
I'm sorry that you have to use it, but glad that you found it :)

This is a really great place to get your questions answered, and even just talk to people who are going through the same thing as you. One of the big problems that many people have is that people in their "real life" just don't understand the pain and problems that they're going through, so it's quite wonderful being able to talk and vent and complain on here - where people know what you're going through and can lend an ear whenever you need.

Welcome again, and don't hesitate to ask for anything you need!

07-06-2011, 02:34 AM
Hi Cecillia,

Welcome to our lovely family of WHL and you've come to the right site for help with your condition as so many of we are suffering what you've been diagnosed including myself.

You'll learn so much from the threads and learning what comes with systemic Lupus and if you need to chat or vent anytime, there's always someone on 24/7 that's what makes the site so wonderful and you'll meet some great people.
Furthur information concerning you diagnosis helps we more in such a great way also to respond to you.

I'll add info below on systemic Lupus to help you and it will be nice getting to know you.

((Hugs Terry)) xxx

07-06-2011, 02:40 AM

Systemic Lupus Erythematosus
Systemic lupus erythematosus (SLE) can cause various symptoms, the most common being joint pains, skin rashes and tiredness. Problems with kidneys and other organs can occur in severe cases. Treatment includes anti-inflammatory painkillers to ease joint pains. Steroids and/or other medication is sometimes also needed.

.What is systemic lupus erythematosus?
Systemic lupus erythematosus is a chronic (persistent) disease that causes inflammation in various parts of the body. It is commonly just called SLE or 'lupus'. The severity of SLE ranges from mild to severe. There are two main forms of lupus. Discoid lupus only affects only the skin and is not discussed in this leaflet. The other form is systemic lupus erythematosus which involves the skin and joints and may involve internal organs such as the heart or kidney as well..

.Who gets SLE?
SLE affects about 3 in 10,000 people in the UK. It is ten times more common in women than men. It most typically develops in women aged between 20 and 40. However, anyone at any age can be affected. It is more common in people from Afro-Caribbean, Asian, or Chinese origin. Although SLE can run in families, only 3 in 100 of children of patients with SLE will actually develop the disease..

.What causes SLE?
SLE is an auto-immune disease. This means that the immune system (which normally protects the body from infections) mistakenly attacks itself. This can cause symptoms and may damage the affected parts of the body. Other autoimmune diseases include diabetes, rheumatoid arthritis and thyroid disorders.

It is not known why SLE occurs. Some factor may trigger the immune system to attack itself. Possible triggers of SLE include infections, drugs (for examples minocycline or hydralazine) or sunlight. Hormone changes may play a role in SLE which could explain why it is much more common in women..

.What are the symptoms of SLE?
The symptoms and severity of SLE vary tremendously between people. Many people have fatigue (tiredness), weight loss and a mild fever. In addition, one or more of the following may develop:.

.Joint and muscle pains
Most people with SLE develop some joint and muscle pains. Sometimes only a few joints are affected whereas other people have many joints affected. The small joints of the hands and feet tend to be the ones affected most. The pains may 'flit' from joint to joint. Joint stiffness is common and is usually worse first thing in the morning. Mild joint swelling may occur but severe arthritis with joint damage is unusual..

.Skin, mouth and hair
A red rash which develops over the cheeks and nose is common (the 'butterfly rash'). Other areas of skin exposed to sunlight (hands, wrists, etc) may also develop a rash. About 6 in 10 people with SLE find that their skin is very sensitive to sunlight. Various other rashes may develop. The blood vessels just under the skin may also be affected and cause poor circulation to the fingers and toes (Raynaud's phenomenon). Mouth ulcers are more common in people with SLE. Some hair may fall out (alopecia). Any hair loss tends to be minor and cause hair 'thinning' rather than bald patches. However, quite serious hair loss sometimes develops, although the hair often grows back when SLE is less active..

.Blood and lymph
A mild anaemia is common. Other blood problems such as reduced numbers of white blood cells or platelets (the cells that help the blood to clot) are less common. A tendency to form blood clots is an uncommon complication. Some lymph glands may swell..

.Heart and lungs
The tissues that cover the heart and lung (the pleura and pericardium) may become inflamed. This can cause pleurisy (pains in the side of the chest) or pericarditis (central chest pains). The actual heart or lung tissue is less commonly affected..

Around 1 in 3 people with SLE may develop inflammation of the kidneys which can lead to the kidneys leaking protein and blood into the urine. This does not usually cause problems unless the disease is very severe. Kidney failure is an uncommon complication..

.Brain and nervous system
Mental health problems in SLE are fairly common and include depression and anxiety. Although mild depression can be part of the disease itself, it can also be due to your reaction to having a serious illness. It is not uncommon for people to have difficulties in coping with having SLE. It is important to share any feelings you have have with your doctor as treatment can be really beneficial. Occasionally, inflammation of the brain can lead to epilepsy, headaches, migraines and other conditions..

.How does SLE progress?
In some cases the symptoms develop quite slowly. At first they may be confused with other problems as there are many possible causes of joint pains and tiredness. Sometimes several symptoms occur together. Symptoms range from mild to severe. For example:.

•Mild SLE. Many people with SLE just have joint and/or skin symptoms with tiredness. These are unpleasant but are not serious or life threatening.
•Moderate SLE. This includes some inflammation of other parts of the body apart from joints and skin. This may include pleurisy, pericarditis or mild kidney inflammation.
•Severe SLE. In some cases, severe inflammation develops which can cause damage to organs such as the heart, lung, brain or kidneys. This can even be life-threatening.
Typically, there are times when the disease flares up (relapses) and symptoms become worse for a few weeks, sometimes longer. These relapses tend to alternate with times when symptoms settle down (remission). The reason why symptoms flare-up or settle down is not yet fully understood..

.How is SLE diagnosed?
If your symptoms suggest SLE then your doctor will usually do some blood tests. Most people with SLE have an antibody called antinuclear antibody in their blood. (Antibodies are small proteins that are part of the immune system.) Another antibody called anti-doubled stranded DNA (dsDNA) is a often present in people with SLE. Various other antibodies are also associated with SLE. However, they can also occur in perfectly well people who do not have SLE. However, typical symptoms combined with high levels of certain antibodies usually indicate that you have developed SLE.

Once SLE is diagnosed, you will normally be advised to have regular checks and tests. For example, regular blood tests to check for anaemia and urine tests to check for kidney problems. A blood test to measure a blood chemical called 'complement' (another part of the immune system) can assess the activity of the disease. The level of this chemical reflects how 'active' the disease is.

Other tests including scans and X-rays may be advised to check on the function of the heart, kidneys and other organs if the disease is thought to be affecting these areas of the body..

.What are the treatments for SLE?
Although there is no cure for SLE, this condition can usually be controlled and symptoms eased. Most people with SLE are seen regularly by a specialist who advises on treatment. The treatments may vary from time to time, depending on the severity of the disease or flare-up of symptoms and also which parts of the body are affected. You may even not need any treatment if you have very mild symptoms.

Treatment options include the following:.

.Non-steroidal anti-inflammatory drugs (NSAIDs)
These are often called anti-inflammatory painkillers and are commonly prescribed to ease joint or muscle pains. Examples of these are ibuprofen, naproxen and diclofenac. The main possible side-effects from these drugs are stomach and gut problems such as pain or bleeding in the stomach. If necessary, other medication can be prescribed to protect the stomach from these possible side-effects..

Hydroxychloroquine is often effective at improving skin problems, tiredness and joint pains that are not well controlled by non-steroidal anti-inflammatory drugs. It is not clear how this drug works in SLE. It may take 6-12 weeks for it to become fully effective. The dose is often reduced to a lower 'maintenance' dose once symptoms have eased. Many people with SLE take this drug long-term to keep symptoms away. Side-effects are uncommon. The most serious is damage to the eye which is unusual. Your doctor is likely to check your vision before you start it and then every year. If you are taking this drug and notice any changes in your vision, you should inform your doctor promptly..

Steroid tablets are usually advised if you develop more severe symptoms. Steroids reduce inflammation and the dose is usually given as low as possible in order to reduce any side effects from the steroids. Steroids may cause side-effects if taken for long periods. These include thinning of the bones (osteoporosis), thinning of the skin, weight gain, muscle wasting, high blood pressure and other problems..

Drugs such as azathioprine, ciclosporin, cyclophosphamide, methotrexate and mycophenolate may be advised if you have severe SLE. These drugs are called immunosuppressive drugs because they work by suppressing the immune system. One side effect of these drugs is that you will be more prone to developing infections. If you take one of these you need to have regular blood and urine tests to look out for possible side-effects..

www.patient.co.uk › Information Leaflets (Type in the search section systemic Lupus)