More on Sarcoidosis

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I have an old high school friend who suffers from this. I am going to find more information if I can. I know many of us have overlapping disorders so this may be helpful to you too. I got this from http://www.nhlbi.nih.gov/health/health-topics/topics/sarc/

 

What Is Sarcoidosis?

Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. This disease affects your body’s organs.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is gone, the cells and the inflammation go away.

In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.

Overview

Sarcoidosis can affect any organ in your body. However, it’s more likely to affect some organs than others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).

Also, the disease often affects the eyes and liver. Although less common, sarcoidosis can affect the heart and brain, leading to serious complications.

If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have sarcoidosis have no signs or symptoms or mild ones.

Lofgren’s syndrome is a classic set of signs and symptoms that is typical in some people who have sarcoidosis. Lofgren’s syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum (er-ih-THE-ma no-DO-sum).

Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Treatment for sarcoidosis varies depending on which organs are affected. Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has sarcoidosis needs treatment.

Outlook

The outlook for sarcoidosis varies. Many people recover from the disease with few or no long-term problems.

More than half of the people who have sarcoidosis have remission within 3 years of diagnosis. “Remission” means the disease isn’t active, but it can return.

Two-thirds of people who have the disease have remission within 10 years of diagnosis. People who have Lofgren’s syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.

Sarcoidosis leads to organ damage in about one-third of the people diagnosed with the disease. Damage may occur over many years and involve more than one organ. Rarely, sarcoidosis can be fatal. Death usually is the result of problems with the lungs, heart, or brain.

Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Certain people are at higher risk for poor outcomes from chronic (long-term) sarcoidosis. This includes people who have lung scarring, heart or brain complications, or lupus pernio (LU-pus PUR-ne-o). Lupus pernio is a serious skin condition that sarcoidosis may cause.

Research is ongoing for new and better treatments for sarcoidosis.

Sarcoidosis Clinical Trials

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Sarcoidosis, visitwww.clinicaltrials.gov.

 

Letter to friends and family

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I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…

Enjoy!

A letter to be shared with friends and family
by Theresa Stoops in Florida

WHAT YOU SHOULD KNOW ABOUT ME

My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.

My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,

I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.

==== And always remember I LOVE YOU! ====

Your Stories

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If you would like to put your story of autoimmune disease and how it has affected your life, please send me a comment and your permission to publish it, and I will post it here on this blog. It is encouraging to others when they read the stories of people who are ging through the same things they are. You do not have to have lupus, just any autoimmune disease. I appreciate it very much! Thanks!

Trials of life

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Life, it seems, has a warped sense of humor. This is brought into focus more clearly by the fact that not only do I have an incurable disease like lupus, but I am also susceptible to other things coming down the pike (pardon the pun) because of the lupus.

While lupus is an autoimmune disease that causes the body to attack itself, the treatments for it can bring about the opportunity for other bugs to enter my system. You see, the treatments for lupus include various immunosuppressants that make your immune system low or weak and thus, you are vulnerable to these bugs that surround you daily. The definition is this: An immunosuppressant is any substance that performs immunosuppression of the immune system. They may be either exogenous, as immunosuppressive drugs, or endogenous, as,e. g., testosterone. When the immune system function is suppressed, there is an increased susceptibility to infectious diseases and cancers. (wikipedia).

Another way to put it is this, from the web site Suite 101: 

Blood tests are used to evaluate any blood cell disorders or biochemical changes, for instance in liver or kidney function that may occur as a result of immunosuppressant medications. Side effects related to immunosuppressants include high blood pressure, kidney problems, liver problems, and susceptibility to infection. Signs of infection, such as fever, chills, and lower back pain should be reported immediately.

People on immunosuppressant medications should avoid contact with people who have infections and they should avoid vaccinations unless directed by their physicians. People taking immunosuppressant medications should also avoid contact with anyone who has taken the oral polio vaccine because there is a possibility that the polio virus could be transmitted to them. People residing in the home of someone on immunosuppressants should avoid taking the oral polio vaccine.

Immunosuppressant medications can also cause dental problems, including tender, swollen, and bleeding gums. A dentist should be consulted if these problems occur.

Immunosuppressants may cause light sensitivity and severe reactions upon exposure to sunlight, increasing the risk for skin cancer in people using long-term immunosuppressant medications. The risk of cancer increases in people on immunosuppressants, especially in patients who are on other medications that suppress the immune system including corticosteroids, chlorambucil, cyclophosphamide, and mercaptopurine. Normally, the immune system protects us from cancer and infection by removing mutated and infected cells. When the immune system is suppressed, the risk for cancer and infection increases.

So, you can see, this is important information for those of us who take immunosuppressants on a daily, weekly, or monthly basis and in conjunction with corticosteroids. We need to be vigilant to avoid taking unneccessary risks with our already weakened immune systems.

That being said, I have found that I have developed a stomach bug of some sort. In a normal person, it would not have probably developed. In me, it has meant two days of discomfort, the likes of which I do not wish on anyone. I am blessed with a loving husband who has taken good care of me while I was down and resting. I thought I would have lost some weight, but it did not turn out that way…go figure. I am on the mend now and hope to be back to my old self in the next day or so, just in time for our district assembly this weekend.

Hope you all have a great day and week!