SLE and Sjogren Syndrome

OK now let us now continue with Lupus. Yes i am suffering from Systemic Lupus Erythematosus (SLE) and Sjogren Syndrome. Basically Sjogren came with the SLE. It has never occured to me that i would be one of the people suffering from lupus. I've always read about it in magazines and newspapers but never would i thought i would be diagnosed with it. It is not as bad as cancer but it can be life threatening because it can lead to kidney failure, blood clots, hypertension hence heart attack, epilepsy, problems with lungs and pancrease and osteoperosis. Some people detected it late and it had already affected their kidneys so they can only survive another 5 to 10 years. As for me, i am lucky enough to have an early detection as Sjogren attacks my parotid glands that made my face puffy so the desease became very apparent. Parotid glands are the glands at your jaw under the front ear. The glands are also responsible for producing bodily fluid like saliva and tears.

Now, no two people will have exactly the same symptoms with lupus. It varies with individuals therefore treatment is tailored specifically for individuals. I had spent some time to do research to understand the desease and understanding it can be quite difficult. Take my case for example, i only noticed my illness when my face became very puffy, i had body ache and fatigue. I was literally down with cold or fever every month. I thought i was because of my sinusitis and my allergy that i often get sick. I had difficulty swallowing and sometimes breathing. Then it got worse and worse when fatigue struck almost every day with radiating jaw pain and more puffiness. My weight starts to pile on despite me exercising and doing high intensity activities like bootcamp. For me i do not have the butterfly rashes on the face but i did have rashes on some parts of my body that eventually dissapears. Oh and i had brain fog sometimes so i cant really function properly on some days.

Why do i say i have LSE and Sjogren? It is two different type of lupus. LSE may affect various parts of the body, but it most often manifests in the skin, joints, blood, and kidneys. Its very name helps define the disease:

• Systemic is used because the disease can affect organs and tissue throughout the body.
• Lupus is Latin for wolf. It refers to the rash that extends across the bridge of the nose and upper cheekbones and was thought to resemble a wolf bite.
• Erythematosus is from the Greek word for red and refers to the color of the rash.

Lupus has many different symptoms. Common ones include:

• Fatigue
• Joint pain or swelling
• Skin rashes

Sjogren (pronounced SHOW-gren) Syndrome on the other hand, is a chronic autoimmune inflammatory disease in which moisture producing glands are damaged, signinficantly reducing the quantity and quality of saliva and tears. Although the hallmark symptoms are dry mouth and eyes, other organs may be affected - kidney, gastrointestinal system, blood vessels, lung, liver, pancreas and nervous system. Patient may experience extreme fatigue and joint pain and have a higher risk of lymphoma. Nine out of ten patients are women. Half of the time Sjogren occurs alone but on the other half it occurs with other connective tissue disorders such as SLE and rheumatiod arthritis. So like mine, it can be viewed as Secondary Sjogren because i am more towards SLE.

How do doctors determine whether it is SLE or Sjogren or both? From my research and what i can see from the blood test  i did, SLE will show a high level of anti dsDNA. Only people with LSE will have a high level of anti dsDNA. Sjogren is determined with anti Ro and anti La. Apparently my anti dsDNA is very high which is why doctor thinks its more towards SLE than Sjogren. So SLE manifest itself in the body and Sjogren contributes to the swelling of my parotid glands. Do you get the difference?

From my experience, these are the cronicles of the symptoms that i have had for the past years:

1) Kidney infection stage 2 in 1999 which can lead to kidney failure it went to stage 3 at that time. Luckily i detected it before it went to stage 3.
2) Unexplained recurrent urinary tract infection in 2004.

3) Rashes on the hips and thigh area and sun rash on the neck area in 2001 and 2006.

4) Fatigue every now and then but more apparent in 2011 with the swelling of parotid glands.

5) Difficulty breathing (misdiagnosed of pharyngitis) 2008, 2010 and 2011.

6) Throat ulcer in 2011.

7) puffy face and fatigue in 2011.

8) upper body muscular pain and fluid retention in 2011.

9) GERD in 2011.

10) skin rash on palm of hands in 2011 due to sudden allergy to household cleaning agents.

I have also had recurrent sinusitis sometimes nose bleed.. As you can see the disease has already manifested itself without me realising it. The illness i get may look like a normal specific illness but actually it was flare ups. Like skin rash, i went to a dermatologist but somehow it went off by itself after a year. The recurrent urinary tract infection was unknown because my urine shows a normal result. When i look back at all my pictures, i realise that sometimes my face was round and sometimes its oval. Technically, my face can change just like that.

It is important for me to document all this for my own understanding and for the others to understand me. Autoimmune disease are permanent. It has no cure and i just have to manage it properly to avoid life threatening situations. Medications are steroids and plaquinil (anti malaria) tablets. I will have to take it up to 4 years to suppress the flare ups and then only can i get off the steroids. It is a life changing situation but thankfully i have been living quite a healthy life like eating a lot of fruits, exercising, wearing sunblock everyday and sunglasses when im out. My habit kindda saves my life actually but island trips has done more damage to me without realising it. Lupus sufferer is sensitive to UV light which can cause rashes or systemic flare ups. We are not allowed to go out between 10am to 3pm daily beause UV is at its peak. As for now, i have to let go of my island trips this year and manage my disease first. I hope next year i can go swim with the fishies..

Medication and sunlight is another topic that i shall delve into in my next update. Living with lupus is not easy but you just have to keep on living.