FAQ - Sarcoidosis
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I have a friend who has the lung disease 'Sarcoidosis' for over ten years. Does anyone know someone who has this? If you have this please let me know how you have been coping. (i.e. symptoms, behavior, medicine, etc. What has worked for you?

I was diagnosed with Sarcoidosis over 2 years ago. Sarcoidosis is considered a lung disease based on the fact that 90% of patients have lung involvment. You can have Sarcoidosis and have no lung involvment at all. My symptoms presented as systemic; fatigue, malaise, low grade fever, joint pain, weakness. I also had inflammation in my ankles with severe pain. A chest X-ray revealed bilateral hilar adenopathy which is a classic picture of Sarcoidosis. Even though these lymph nodes were enlarged, I presented with zero lung symptoms.

Sarcoidosis can be complicated. Many people have Sarcoidosis and never know it because they have no symptoms. Others have a chronic disease which can be destructive to various organ systems and life threatening.

The best thing to do to cope with this disease is to understand it. Keep going to Doctors until you find that one that has a strong knowledge of it. I have been to many Doctors who barely know anything about Sarcoidosis.

Corticosteroid is usually prescribed to control the inflammation caused by Sarcoidosis. This is a very potent drug so be sure your Doctor is certain you need it.

Based on my own knowledge from research and experience I would recommend keeping yourseld well informed and establishing a good relationship with your Doctor(s). Make sure your Doctor(s) know what they are talking about! Also, it is very important to maintain a healthy life style. If you smoke, quit now!!!! Try to avoid alcohol. Eat healthy and exercise regularly. Your exercise program should be based on your condition. Some Sarcoid patients might have serious organ involvment that would make certain exercise routines dangerous. I cannot stress how much maintaining a positive outlook & reducing stress will help your condition. I know from experience that Sarcoidosis can make life very difficult. No one understands how you feel. Keep a healthy routine in your life and don't stress the little things. Stress is debilitating in healthy people so you can imagine the effects on an individual with Sarcoidosis.

Good Luck!

I am not a health care professional so please make sure you listen to a licensed health care professional above all else.  (+ info)


i know sarcoidosis can result in death.
but what occurs in this condition that results in death?
please be specific.

Sarcoidosis is a disease that results from a specific type of inflammation of tissues of the body. It can appear in almost any body organ, but it starts most often in the lungs or lymph nodes. As sarcoidosis progresses, microscopic lumps of a specific form of inflammation, called granulomas, appear in the affected tissues. In the majority of cases, these granulomas clear up, either with or without treatment. In the few cases where the granulomas do not heal and disappear, the tissues tend to remain inflamed and become scarred (fibrotic). When either the granulomas or fibrosis seriously affect the function of a vital organ (the lungs, heart, nervous system, liver, or kidneys, for example) sarcoidosis can be fatal. This occurs less than10% of the time.  (+ info)

Can paitents of heart sarcoidosis go into cardiac arrest in the hospital?

I was wondering if paitents of heart sarcoidosis can go into cardiac arrest in a hospital? Is it still possible to go into cardiac arrest while in the hospital with it? My friend is in the hospital at the moment, and I havn't heard anything about him yet.

you can go into cardiac arrest anywhere. patients with sarcoidosis can have a heart attack that is different from the "norm" if you will. most heart attacks are caused by blocked coronary arteries. sarcoidosis can cause the heart muscle to get very thick and sometimes it grows over the arteries that supply blood to the heart. if the heart beats too fast it can block off its own blood flow and cause a heart attack. that's what happened to my mother. her coronary arteries were fine but she had a heart attack that they say was caused by the sarcoidosis.  (+ info)

I received a cortizone shot in my hip to help with inflamation from Sarcoidosis. How long does the shot last?

I received a cortizone shot in my hip to help with inflamation from Sarcoidosis. How long does this type of injection last? Thank you.

It will not last. You need to find a longer term answer.  (+ info)

Is there a link between Sarcoidosis and Depression?

I got Sarcoidosis in 1993 and since then I have suffered depression, anxiety and lately OCD.

Sarcoidosis is a lung condition, so I wouldn't have thought that it would be directly related to mental health problems. However, I think that the symptoms you are suffering might exacerbate depression which in turn exacerbates OCD.

Go to your GP and see if he can help.  (+ info)

Is anyone familiar with jaw pain in relation to Sarcoidosis?

My jaw has been in absolute agony for a week. I went to the dentist who checked out my teeth and all was clear. He did think I might have ground my teeth in my sleep and now have TMJ. However I do have Sarcoidosis, and have been reading that sarcoid can effect your jaw, particularly salivary/parotid glands. Does anyone here have experience with this effect of Sarcoidosis?

Possible. See your internist.  (+ info)

Does anyone else out there have Sarcoidosis and Bipolar Disorder?

I have Sarcoidosis in my lungs and skin. I've read that I can affect your nervous system. I'm wondering if I should seek a specialist to see if it's in my nervous system.

Bless your heart! May the Lord heal you!
Pain many times leads to depression.
I know Bipolar illness sometimes goes from one extreme to the next. But I am sorry, I do not know anyone who has both.

There is good reason why you should see a specialist anyway.
Perhaps one will have the breakthrough you need.
God bless you and good luck!


  (+ info)

What is your experience with Sarcoidosis?

I was recently diagnosed with Sarcoidosis and am wondering what others experience has been after being diagnosed. I have found that I am getting sick quite easily, basically catching every little bug that is going around and then some!

Hi, I do not have sarcardosis, but run an online support group for people with autoimmune diseases. From what I researched and already knew about this illness I know that it mainly attacks the lungs, and unlike most autoimmune diseases, usually does not last forever, with treatment it may last about 24-36 months. It seems that you are getting ill from the illness itself, but possibly the treatments that you are on for it. My guess is you may be on drugs such as prednison, methotrexate,Rheumatrex, Trexall , or a medrol pack or a combo of these drugs. all which supress the immune system. making a person much more suseptibale to infection. Including colds, flus, viruses, even allergies. which once finished with treatments after 5-6 months your body should return to a normal immune function, and not be so easily suseptiable to those viruses and bacterial infections. Many people on these drugs, do tend to get ill easier then those who are not ill and not on them. Also over time, your body may build a tolerance and not catch every little bug, and make you ill, even while in treatment. But to get rid of the Sarcardosis, you do need these medications, and any other treatments your Dr has percribed. So you can get rid of this illness. Right now your own body has produced anti-bodies that are attacking themselves causing the Sarcardosis. But it wont be forever. I know MTV ex VJ Duff had it, and was rather ill for awhile. She made a full recovery within 2-3 years. And was happy she went through with the treatment, even with the side effects and discomport, she said it saved her.

I do own a online message board/support group for those with autoimmune diseases, who need answers and support, if you feel like you need some help for now, we can help with research and support, and a lil craziness (a funny bunch). Also a smart bunch.
I am also going to include the link that I got some of the information for Sarcoidodis from.
I hope this helped you understand why you are catching everything, but also helps you realize that while difficult it will not last forever, like most chronic autoimmune diseases
Good Luck
Chris  (+ info)

For an 39 AA male who has serious Sarcoidosis in lungs& a history of smoking- can this turn into lung cancer?

He has dropped almost 50 pounds in 6 months and has had sleep apnea but this has went away. He is very weak and tired all the time. Problems and pain while sleeping at night. He has been dealing with the lymph nodes and chronic chest pain symptoms. There was a time when he had a severe cough that wouldn't go away. He doesn't like to go to the doctor, so when his doctor said that he needed another chest xray, he didn't go. It's been years since his last chest xray. He smoked for about 15 years, quit for a few years, started again, and now it's been over a year since he last smoked. We believe that he's afraid to hear that he has lung cancer because the Sarcoidosis has spread to his eyes, lungs, and now his bones. His eyes have gotten better, but he looks very sick. At night he breaks out in sweats, and my question is if this sounds like lung cancer or an advancement from Sarcoidosis? Has anyone else known someone's Sarcoidosis to turn into lung cancer?

Sarcoidosis is an inflammatory, autoimmune disease and is not associated with development of lung cancer, although some of the symptoms may resemble lung cancer in it's advanced stages, especially in stage IV sarcoidosis. It can be a systemic disease causing a lot of pulmonary/respiratory difficulties. Having said that, since this man has a history of smoking, it would not be unthinkable for lung cancer to have developed independent of his sarcoidosis. Certainly, appropriate evaluation by a physician and work up is recommended.  (+ info)

Does anyone know of any herbal/natural remedies for Sarcoidosis?

I am 39 and was diagnosed with Sarcoidosis about 2 years ago. Of late I have felt the symptoms becoming worse again. I was given steroids before but don't like the side effects. Can anyone help me find an effective alternative to prescription medicines?

I do not have the answer for you but am going to give you a sight to look at. Go to the Encyclopedia of Natural Healing online, or most health food stores have a copy as a reference. Also ask the resident nauropath at Straussherbco.com. I know nothing of your illness but highly reccomend that you start here and then go to your local health food store for reccomended products. Also put a filter on your shower, and use bottled water for everything else. This is available at your local water store. On general health alone this is good advise. Chlorinated water causes more harm than your can realise. Good luck. Harvey.  (+ info)

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