Patient Comments: Sarcoidosis - Describe Your Experience

Question:

Please describe your experience with sarcoidosis. Submit Your Comment

Comment from: Mz. AAA, 55-64 Female (Patient) Published: November 10

I had sarcoidosis for 7 years. My breathing was funny, both my legs had spots on them, my face changed, I developed black circles around my eyes, and I look a lot older than I am. I have to wear face foundation and makeup to look like myself. My friends are shocked when they see me without makeup. My mom died with sarcoidosis, and I got it years after she passed away.

Comment from: Lspriggs53, 65-74 Female (Patient) Published: October 31

I initially was diagnosed with sarcoidosis in the 90s. I developed severe shortness of breath. I had an x-ray of my chest and I had enlarged lymph nodes, and lung was full of granulomas. I was short of breath and didn't realize it. I was on prednisone for a long time and I have permanent shortness of breath. I was losing weight but once I was on steroids I gained weight. My heels were painful and I was given colchicine for my severe pain. I developed arthritis everywhere. Also asthma; I am on inhalation therapy.

Comment from: Ada, 35-44 Female (Patient) Published: July 02

I was diagnosed with sarcoidosis in 2003. I was sick for about a month, finally saw a doctor, was hospitalized, had lung biopsy, and then told that I have sarcoidosis. I had had pneumonia for a long time. There was so much water for so long that there were scarring, and lumps. I was in hospital for couple weeks, and they put me on prednisone, methotrexate, and a few other medicines. It started with lungs, and pretty soon involved skin and eyes. I had three surgeries on my eyes. I'm dealing with pain, weakness, and fatigue on a daily basis, but my concern now is prednisone. I have rheumatoid and osteoarthritis, endometriosis, chronic migraine, chronic pain, fibromyalgia, high cholesterol, and seizure disorder.

Comment from: DOReasearch, 45-54 Female (Patient) Published: November 05

I am a healthy 34 year old (never had pertussis vaccines). I coughed so hard my face turned red, I vomited, and could not get air in. There was a whooping sound, dry cough (never any phlegm), and rib pain so bad I could not sleep for 6 weeks. The doctor and the emergency room misdiagnosed it as bronchitis, and 2 rounds of prednisone and antibiotics did nothing. Demand that your doctor do a WC swab test! If you suffer excruciating rib pain you might have costochondritis (also often misdiagnosed). The whooping cough lasted 80 days, and I still have no energy. It depletes red blood cells, I need iron and B12.

Comment from: cj, 65-74 Female (Patient) Published: September 25

I was diagnosed with sarcoidosis in 2016 after being bedridden for 6 months with coughing, wheezing and exhaustion. A lung biopsy confirmed my diagnosis. Other symptoms included lumps on my legs and painful ankles. First treatment of prednisone provided immediate relief. But after many months of prednisone, I was instead put on methotrexate, which is better for long term. I have been symptom free ever since.

Comment from: Diney, 45-54 Female (Patient) Published: August 28

I was diagnosed with sarcoidosis this year after months of biopsies, scans and an operation to remove a lymph node from my chest. They first said I had grade four lymphoma which scared me, but this sarcoidosis effect is bad and it has affected my lungs, liver, joints and lymph nodes. The pain is daily but what bothers me most is when I went in to hospital recently I told two doctors about my condition and they had not heard about it.

Comment from: Chichi, 45-54 Female (Patient) Published: June 22

I am an African woman who was diagnosed with rheumatoid sarcoidosis in 2003 in England. It affected my skin and skeletal system. I was treated with prednisone for several months until it disappeared as suddenly as it appeared. It was a hard period for me because for over a year my skin was ugly and my bones hurt such that l couldn't even wear shoes. My skin had rashes from my scalp down to beneath my feet. I stayed home most of the time. At its peak l couldn't bathe myself and my teenage daughter had to help me. I made a full recovery but one of my fingers is permanently bent and l lose balance when running. Recently my ankles have started hurting when it is cold but l don't know if it is as a result of the past rheumatism.

Comment from: Kevin, 35-44 Male (Patient) Published: June 06

People often ask me to describe how I feel. I tell them sarcoidosis feels like I have not slept in a week, fell down the stairs while being run over by a truck and having a hundred garden gnomes stab me in the chest with tiny garden shears. I have felt this way for a good eight years. Lung scarring is present and it’s suspected to be in my optic nerves and other parts of my nervous system but has not been confirmed yet. The joint, muscle and bone pains are especially difficult to deal with. It took seven years to get a diagnosis.

Comment from: Advair helped, 55-64 (Patient) Published: June 05

About 8 or 10 years ago I woke up at 1 am unable to breathe. I went to emergency. Then I went to the pulmonary doctor. He did lots of tests to find out what I didn't have. Then he did a biopsy of my lungs. I had sarcoidosis. He put me on Advair and prednisone. I am now breathing well.

SLIDESHOW

Arthritis: 16 Bad Habits That Cause Joint Pain See Slideshow
Comment from: Sarcoidosis, 45-54 Female (Patient) Published: May 15

I was diagnosed with sarcoidosis after it had me so weak. I had no energy. I was always tired and wasn't doing any work. My doctor ran tests and she couldn't tell me what was going on. She put me on high dosage antibiotics. I had good days and bad days. I was always feeling exhausted. My first bottle of antibiotics didn't work the way she wanted it to. So I was put on a 2nd bottle of a different antibiotics and the same thing; good days bad days. She sent me to get things like x-rays and other things done. I was down and not able to do anything for over 6 months. I wasn't listening to my body and I was going to my car to go to work, but I felt so drained. I felt like I had been hit by a big truck and I turned around went back in my house and like I said I was out of commission for over 6 months.

Comment from: CD, 65-74 Female (Patient) Published: May 10

I was diagnosed with 3rd stage breast cancer 9 years ago. My chest scan lit up like a Christmas tree. It was thought I had 4th stage lung cancer, and turned out to be sarcoidosis. I have a terrible cough, now treated with prednisone. Sometimes medication works, I have gone from 30 mg to 20 mg, to 10 mg. Sometimes I take hydromorphone cough syrup; hard to get. I have a lot of osteoarthritis with a lot of pain and am walking very slow. Pool therapy has been my relief from pain in hips. I also have cortisone injections from pain physician. Pool has done wonders and I was really relieved from pain within a few weeks. I wonder if anyone has had a lung biopsy. I am considering one, I am 73 and a retired dental technician.

Comment from: Garryk93, 19-24 Male (Patient) Published: February 24

At the age of 21 I first found out I have sarcoidosis. In April 2014 I had a chest x-ray done which showed swelling in my lymph nodes in my lungs (I had the chicken pox at the time but I only went to hospital to rule out meningitis). After a biopsy the results came back conclusive with sarcoidosis. I never really felt the side effects with my lungs or legs but in October 2014 I fractured my scaphoid bone in my left hand playing sport. I obviously went into a cast and a month later the cast was removed but my hand/wrist didn't feel right at all. I then went on to have two wrist arthroscopes to remove inflammation but it never sorted the problem. Every day it feels like I have a sprained wrist constantly with pain. My range of movement is slim to nothing but the pain is the worst thing. I've tried physiotherapy and steroids from the doctor and nothing helps. Rheumatology doctors want me to go on methotrexate for 18 months minimum but if my job found out I was taking that kind of medication I would be gone straight away. Being only 24 this is extremely frustrating as I can't do everyday jobs and activities without extreme pain.

Comment from: 45-54 Male (Patient) Published: September 06

I am feeling the pain of everyone here. I found out I had sarcoidosis in April 2016. I have my pulmonologist who said the disease was dormant. The pulmonologist knows my primary care physician (PCP) sent me to this doctor because I have lymphedema from my knees all the way down to my feet. I am a skinny man and my feet and legs look like elephant legs and feet. They have sent me to every doctor known to man. Without treatment I found a lump on my left testicle (painful). My urologist had to remove my left testicle. The lump came back from being examined, as sarcoidosis. So now my urologist states my sarcoidosis is highly active. I am trying to seek help from my PCP and my pulmonologist. I am scared, but will stay strong. My legs are just burning, why who knows. I hope this too shall pass. I hope we all find a solution.

Comment from: Nancy, 55-64 Female (Patient) Published: September 06

I've had sarcoidosis for 18 known years. I have the chronic sinusitis, had surgeries on the sinuses and biopsies on the nodes in my neck. I have enlarged nodes in the lungs also. I had one doctor who kept me on steroids for 12 of those years. I am on disability from 2006 because I've had breast cancer 2 times. Back to the sarcoidosis. I now have a doctor who really knows his stuff. My sarcoidosis was stable from 2007 until 2015. I now have the extreme pain, swelling in legs and the itchy skin. It has affected my knees and ankles, and I have to walk with canes. This is with the other stuff. It's the never ending pain and trying to maintain whatever outlook I can. Of course I have orthopedic doctors, pulmonary specialist doctors, primary doctors, and ENT doctors. There is never ending cycle of doctor appointments and tests, pain, doctor appointments, tests, pain, etc. I'm pain worn out just like everyone else. I'm not even giving this to my worst enemy.

Comment from: Always hopeful, 65-74 Female (Patient) Published: April 26

At the age of around 12 years I woke up one night with both my shoulders hurting. During those formative years, I was told it was all in my head. At around age 30, I was told I had adult onset asthma. This was granulomas in the lungs. Finally I found a doctor at age 60, who did a routine blood test for the annual physical, and in my next visit, the doctor informed me I had sarcoidosis. More is known now than then, the pain(s), vision issues, mood swings, fatigue, etc., hyperparathyroidism (these glands are supposed to control the amount of calcium going to the bones, but when they malfunction they direct the calcium to the kidneys), and now there are kidney stones, and unbelievable diet restrictions. My wishes to all who suffer for relief.

Comment from: MelanieR, 45-54 Female (Patient) Published: April 08

I am 47 diagnosed with sarcoidosis last fall, but suspected I had it for a few years and finally researched a doctor and made my own appointment at a sarcoidosis clinic. The doctor agreed since I had a liver biopsy with granuloma and I insisted on a biopsy of some of the skin tissue on one of my tattoos that have raised tissue and showed a granuloma. At the time I also had lesions in my fingers and forearms, as well as bone lesions at my wrists. He prescribe Plaquenil since I wanted to stay away from steroids because I am already diabetic. The scar tissue and lumps in my forearms have just about dissipated but my concern now is the amount of fatigue and pain in my legs and hands. I have been to a physiatrist for chronic nerve pain down my arm, he said it wasn't from the neck, and that his EMG indicated some possible carpal tunnel. The pain in my hands is sharp shooting pains at times, other times just aches. My legs ache all the time and if I sit for a period I'm like a 95 year old when I get up; it takes a few steps to get the leg stiffness and motion to get going.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
Comment from: Teresa, 55-64 Female (Patient) Published: February 22

I am a 57 year old female and I was told I had sarcoidosis after I had a section of my lung removed for a biopsy because they thought I had lung cancer in October 2014. The biopsy showed granulose tissue and they confirmed that I did have sarcoidosis. I'm telling you that surgery hurt so bad that I told my primary doctor that I will never have lung surgery again. Now since that time they have found that I also have it in 6 places in the skull bones in my brain and they removed a section of my skull to biopsy and it also showed sarcoidosis. Now I have it on my bottom left shin and left arm. I have been in the hospital for two weeks with this because three different bacteria got in the sarcoidosis knots on my arm and my leg. The doctors keep telling me that I am the only patient they have seen in a very long time that has this disease on the inside and the outside. Lucky me! The joint pain, fatigue and shortness of breath are getting really bad and I wake up feeling like I haven't slept at all and then can hardly walk because of the pain. I have been on up to 50 mg of prednisone and 20 mg of methotrexate and I hate this stuff. I don't think it has helped put me in remission at all. While everyone else is losing weight with this disease I have gained back 50 pounds that I had lost in the last year and a half. I am miserable and trying to decide if I am going to have to quit work or not. I don't want to but I am barely moving at this point which is not fair to my co-workers. I love work but the pain is getting so bad. I'm a multitasker for sure and not being able to do a lot of things and having no memory at all has been so discouraging to me. I really feel like I will die soon because things are not getting much better.

Comment from: Lisa, 45-54 Female (Patient) Published: February 11

I'm not really sure when I became ill with sarcoidosis. I remember having swelling between my legs outside my lady parts, and also swelling under my arms. I did not seek any medical attention for those. I used to choke while drinking water. I did mention this to my primary care physician (PCP), and he suggested an ear, nose, and throat doctor, whom I didn't contact. My sinuses became swollen, and I couldn't smell anything. Then I had ringing in both ears which I thought was brought on by my job. I became ill with pneumonia which would not respond to medication, so my PCP sent me to a pulmonary specialist. I had a bronchoscopy which was inconclusive. Next a lobectomy was done which was incredibly painful. The diagnosis was sarcoidosis. I continued working full time. I've had extremely painful swollen knees. My PCP sent me to an orthopedist where I got injections of steroids in my knees to treat the arthritis. Walking to my work area became unbearable because I couldn't catch my breath while climbing stairs. Presently, I'm disabled and not working. I have no support. After doing the 6 minute walk at the pulmonary doctors, my oxygen saturation fell to 80. I'm now on oxygen, told to use it 24/7. My pulmonary doctor hasn't discussed anything with me concerning my condition, or stage of disease. Where I live there is only one practicing group of pulmonary doctors who will take my insurance. I'm depressed, and anxious. When I try to walk any kind of distance my pulse skyrockets and my oxygen level plummets. I don't work, and it's like I'm waiting to die.

Comment from: WA Girl, 45-54 Female (Patient) Published: January 19

I have been very healthy all of my life. Two years ago, I had pain in my chest. I thought it was heart attack and went to the emergency room. The nurse heard 'rubbing' in my lungs, and said it was pleurisy, an inflammation of the lining of my lungs. Painful, but with ibuprofen, manageable. But two years later, my doctor was baffled by the continued extremely painful pleurisy, and sent me for an x-ray, then a CT scan. There were two huge tumors in my lungs. I cannot tell you my shock. Within weeks, I had surgery to remove one tumor and part of a lung. Diagnosis, sarcoidosis. I was told, at least it's not cancer; yes, but what is sarcoid! The pulmonary doctor put me on 40 mg of prednisone, then 30, and now 10 for a year. Last x-ray showed remaining tumor is 90 percent gone. I should be elated, but I have to say, I'm scared; why do I have sarcoid, what did I breathe, and how can I avoid breathing it again. Will this affect other parts of me? No answers. So I am glad to see others managing sarcoidosis, but I am also left feeling very uneasy. I want to kick this disease, but I don’t know how to do it.

Comment from: Marie, 55-64 Female (Patient) Published: January 12

I started losing weight (unexplained) so I went to my doctor who told me that as I get older my weight shifts. I said I understand but I’m not shifting I had lost 37 lb. I asked for a body scan which stated I had active lymphoma (hilar, liver, spleen and supraclavicular areas). I got the results the same day. I went to doctor because of the severe left sided pain that was usually the worst in the mornings. I was told that I needed to see an oncologist and surgeon but first I needed to get a biopsy done so I went for a biopsy of the supraclavicular node which resulted in unsuccessful diagnosis. Then I had a bronchoscopy done which was unsuccessful so I was frustrated, hurting and mad. The oncologist told me that I needed to have my spleen removed so I did. Then 2 weeks later I was told I have sarcoidosis for which I am being treated with prednisone. In the meantime I am fighting with my cancer policy which wants to pay nothing on my bill because it wasn't cancer but all my tests stated active lymphoma until two weeks post-operation, and I have a breakdown of hospital and initial diagnosis. My oncologist told me this is as close to cancer as you can get. I have pain in my right upper region under my breast and my left buttock cheek hurts daily. I'm frustrated because in this day time the right diagnosis should be able to be confirmed through the technological age we are in. My fellow sarcoid friends you are not alone.

Comment from: sickofpain, 35-44 Female (Patient) Published: December 31

I was diagnosed with sarcoidosis after the doctors thought I had breast cancer. I have it in my nodes. I also have shortness of breath, chest pain and a hard time breathing after just a little bit of exertion. I am on steroid inhalers and rescue inhalers. What bugs me more is the pain; back, neck, joints, and horrible headaches. I think it may be in my mouth because I have sores in the corners of my mouth now for two months and I had a couple of bumps on the roof of my mouth.

Comment from: leanndwalters, 19-24 Female (Caregiver) Published: November 06

My daughter had a baby boy by C-section in May, she is 21 years old. She had severe pain a month afterwards and went to the emergency room (ER). They found lesions on her spleen and she was referred to an oncologist. The oncologist did a PET scan and diagnosed her with stage 3 to 4 lymphoma. They did biopsy of lymphoid tissue in her lungs and found out it was sarcoidosis. They sent her to a pulmonary doctor who did nothing and now a rheumatologist who started her on 40 mg of prednisone for the past 8 weeks. Prednisone has done nothing for her and the disease is now in her liver. I don’t know what to do.

Comment from: lottofreak55, 55-64 Female (Patient) Published: October 15

I am a 57 Year old female. I had a cough that wouldn't go away. Doctor had me change my medicines, but it didn’t help. He sent me for a CT scan of the head and chest. With these results doctor told me and my husband that I had cancer or Hodgkin’s lymphoma. Steroids seemed to make the cough go away. I also had a bad sinus infection. I had surgery for a biopsy of my lung and it was determined it was sarcoidosis. Then a few months later I had the sinus surgery. Here I am again with the cough and achy knees and I cannot taste or smell anything. I begged my doctor to put me back on steroids to help so I could taste and smell again. I am hoping I can find a doctor out there that knows about sarcoidosis and not dismiss it as a nothing disease.

Comment from: 35-44 Female (Patient) Published: August 18

I believe I have had sarcoid since the beginning of last year, I had the dry hacking cough which took my breath away at times and was told it was a respiratory infection, night sweats and fatigue which I put down to menopause, and chest pain that landed me at the cardiologist where I was told that I was fine. This year I had pain in my chest that I could not ignore and I presented myself to Accident and Emergency where I was cleared of heart problems. They did a routine x-ray which showed shadowing in my right hilar region. My CT showed I had enlarged lymph nodes and I was treated with antibiotics for pneumonia and was to have a follow up scan in 8 weeks. While this was happening an ultrasound of my breast showed a suspicious lesion so I was sent to a surgeon. He accumulated all my history (which includes renal cancer in 1999) and sent me for a PET. The scan lit up like a Christmas tree. I was seeing an oncologist that same day who told me I have lung cancer, lymphoma or sarcoidosis and referred me to a respiratory clinic where a bronchoscope was performed and revealed I had sarcoid. I was told it is a boring disease I will have it for 1 to 30 years; it can leave at any time that most people don't even know they have it. I have had kidney and liver function tests, ECG, I have to see a cardiologist to be monitored, I have seen an eye specialist I get told everything is ok, but I don't think so. I am fatigued, I have pain in my chest, under my arms, my groin, around my rib cage, neck, and just recently my wrists hurt, and my ankles hurt I get regular headaches; not every day but since my diagnosis at the end of April I have had maybe 2 weeks pain free. Some days I get by, pain isn't intense, but some days are extremely painful. Now in my treatment plan they won’t let me have steroid treatment at the moment (maybe I don't need it, I don't know) or anti-inflammatory medications because of my one kidney as these medications break up in the kidney. So at present I take Mersyndol for not so bad pain and Endone for the extreme pain. I feel that I have lost my quality of life, I feel pathetic and I feel that the medical field sweeps this disease under the carpet. My best wishes to other sarcoid patients that suffer this horrible disease (apparently boring disease according to the oncologist I have seen). Please keep sharing stories on sarcoidosis as it seems everyone suffers differently and it helps people to know they aren't alone.

Comment from: sandy, 55-64 Female (Patient) Published: May 05

I was introduce to sarcoidosis in 2013, it runs in my family. I had a cough for a whole year and it wouldn't go away. So they removed one of the lymph nodes that was swollen, and sent it to the lab and that’s when they said it was sarcoidosis instead of cancer. It’s hard to deal with it because it started in my lungs, now it’s all over liver everywhere, now I developed depression, and a heart disease, and it caused me to stop working after working for 15 years. I have chronic back and leg pains, shortness of breath and a series of medicines.

Comment from: Cat, 55-64 Female (Patient) Published: February 19

I have had a problem with asthma for many years and have been seeing a specialist for an ongoing liver problem. When with relatives for an appointment, I woke in the morning of November 2013 and said I was in trouble because I could hardly breathe and my voice was weird. When I got home the tests began. At first after a chest x-ray, and then two different biopsies they thought it was lung cancer, then lymphoma. They took out one of my lymph nodes and it came back as sarcoidosis. My breathing was getting worse, as well as night sweats and low grade fevers. I have been on prednisone since October 2014 but when it's cut way back then I'm put back up. I have developed bad fluid problems and couldn't wear the same foot-wear or clothes. Now I'm seeing an internist who has put me on a water pill and more tests because it looks like my heart isn't happy any more, I can no longer lie flat because I can't breathe. I'm so exhausted, simple little tasks have me tired and I feel like I'm going to pass out. My body is beginning to be in pain an awful lot. This doctor at least sits and talks to you. It helps to see others are in the same position as myself. Good luck to everybody.

Comment from: Sam, 55-64 Male (Patient) Published: February 05

I was diagnosed with sarcoidosis 4 years ago, after a long period of night sweats, joint pain, breathing problems and general feeling of being tired and unwell. I had a temperature of 41 C (105.8 F) and kidney pain and was admitted to hospital. After a series of tests and being bombarded with drugs, I was finally diagnosed with the disease. It has devastated my life. It makes everything so difficult and affects my breathing, eyes, kidneys and joints. Some days I can hardly walk. I cannot believe that nobody knows what causes this and can't cure it. Taking ever increasing amounts of medicines is not helping.

Comment from: KevinM, 45-54 Male (Patient) Published: December 31

I am of age 46, white male. My doctor suspects sarcoidosis, sometimes I have slight shortness of breath and live with a chronic cough. No other symptoms really (luckily). I've had x-ray and CT scan. It's apparently an auto-immune condition so I assume the best thing is to reduce stress and do my best to keep my spirits up. On absolutely no medicines at the moment, other than the very best one (iron pills). I'm switching between barbells and the stair climber/bicycle trainer, minimum 3 nights a week, generally 1 hour duration, and try to hold within aerobic heartrate zone while maxing out as many times as possible. I cut out caffeine and am working towards eliminating sugar. I seem to be the opposite of most other people, I'm having a supremely hard time losing body weight! Other important things, I'm keeping up with my hobbies, passionately in love with my fiancé, spending time with the kids (including active time). Live life, don't let the condition take control. If I'm lucky I'll be able to squeeze this new challenge out of my life.

Comment from: Healthy 57, 55-64 Female (Patient) Published: December 16

I had sarcoidosis 35 years ago, shortly after my second child was born. I had raised lumps on my legs then ache in my joints, lost weight, and had trouble breathing. It became hard to walk. After several tests and much confusion a chest x-ray showed swollen lymph nodes and something on my lungs. A biopsy showed that it was sarcoidosis which I had never heard of. It went away on its own and I haven't had a problem since though it left some scar tissue in my lungs.

Comment from: Lisa b, 45-54 Female (Caregiver) Published: December 12

My mom had sarcoidosis and was around 50 when she was diagnosed. We were originally told it was asthma but after a biopsy sarcoidosis was confirmed. Her symptoms got progressively worse over the years to the point where a slight change in temperature or eating certain foods made her have a severe coughing fit. She was put on oxygen while she moved around but it eventually increased to be full time. A few years later she was out on the transplant list and the strength of her oxygen increased month by month. She was soon no longer able to leave then house as too much movement made her oxygen levels drop dangerously low. Unfortunately her transplant never came in time and she sadly passed away early this year at the age of 52.

Comment from: Dorothy, 45-54 Female (Patient) Published: November 20

My sarcoidosis has affected my joints (ankles and knees especially). I struggled to get out of the car, climbing stairs, etc. My lung function remained very good. I developed hard inflamed lumps on my legs but not many. They gave my general physician the clue (after many weeks) that I had sarcoidosis. I went to a rheumatologist and attended an experimental program at in Auckland, New Zealand. They were trying to gather information.

Comment from: Dianne from Australi, 55-64 Female (Patient) Published: November 17

I am 61 and was diagnosed with sarcoidosis 20 years ago when I presented with terrible fatigue and muscle weakness and pain all over my body. I was initially treated with 25 mg of prednisone but after 6 months I was still unable to care for 3 children under 13 years of age. I changed doctors and found a doctor who was very interested in my case and put me on 75 mg of cortisone initially, and whom I was taken to see once a week to stabilize my condition. He eventually put me on a course of immunosuppressive Imuran (azathioprine) to get me off my cortisone. Unfortunately I caught chicken pox followed a fortnight later by gastroenteritis. Each time I had to stop the immunosuppressive drug so that my body could fight the infections. I was given a gamma globulin and somehow I survived. The doctors were not sure how long I would live but my specialist persevered with looking after me. Well, I did recover and I moved to the country and somehow have gained weight with my new relaxed lifestyle. All was going well except for a new very overwhelming gut disorder. I tried a new famously innovative gastroenterologist who helped the gut and I was heavier in weight than I had ever been, 55kg! Unfortunately the medications he has me on seem to have caused a flare of my sarcoidosis so I have a lot of muscle pain and at present inflamed sinuses but still I am going along and still able to maintain activities of daily living most of the time. Life has been great, nevertheless, and now with menopause I am able to do more and more adventurous activities. Before that, every time I menstruated it would cause a flare of symptoms and as I had a short cycle of every 14 to 17 days.

Comment from: USVet1993, 45-54 Female (Patient) Published: October 01

I was diagnosed with this dreaded illness sarcoidosis in 2002. But, I was ill for 10 years before that and did not know that I was. I currently experience muscle spasms in my face due to nerve damage, granulomas in my eyelids, chronic fatigue, severe arthritis, headaches, and much more. This disease is crippling but SSA (Social Security Administration) do not recognize this disease. I refuse to let the bad days keep me down. But, it would be nice to get some medical assistance.

Comment from: DET, 65-74 Male (Patient) Published: September 23

I was just told I had sarcoidosis. After chest x-ray, CT scan, bronchoscope and mediastinoscopy results came back as sarcoidosis. I have fatigue, weight loss, coughing, lung granulomas, and partial hyalinization and calcification. I had PPD skin test. I was given no medicines and told to return in 1 year.

Comment from: GrandmaDeeDee, 55-64 Female (Patient) Published: August 15

I was recently diagnosed with sarcoidosis after having numerous procedures, scans, ultrasounds. My symptoms started last December; I had sharp pains in the left breast, couldn't get off the floor. I had my significant other take me to the afterhours care. They did CT scans on me, I was there almost all day. Months went by and then my primary doctor said I should have more scans done. I've had 5 procedures done, missed work but now I have some closure on what was going on with me. Now I have an eye infection/inflammation from it. I also have high blood pressure that I'm on medication for, not to mention stomach issues (IBS/GERDS, acid reflux), diverticulosis, migraines, herniated disc, and scoliosis. I'm almost 60. I have a lot going on with me but glad to know I can handle it. I have a wonderful family and doctors who were pro-active in getting this diagnosed.

Comment from: Ethel, 45-54 Female (Patient) Published: June 12

Since I found out that I have sarcoidosis, my bladder has weakened and I have more pain in my joints. Vitamin D and calcium do not bother me. I do find I am more sensitive to certain chemical smells. I do not get around people that smoke. When I do I cough a lot. Sometimes my breathing gets bad, but I find that if I sleep in a very cool room my breathing is better. I do better in cool rooms, dry climate is good also. I don't take medicines for sarcoidosis which I am glad, but I have a lot of pain and swelling in my joints. I found out I had this disease when I was in my forties. The worst part is the coughing, swelling of hands, feet, legs, and occasional shortness of breath, and still worse is the chronic fatigue and insomnia that I have gotten with this disease. I also take a flu shot every year, and every 5 years the pneumonia shot, this does help. I try not to let this disease get me down. I have my checkups yearly. I am 53 and I watch that I don't get around people that has a bad cold or fever.

Comment from: DonnaMRN, 45-54 Female (Patient) Published: May 09

I was first introduced to sarcoidosis when my brother was diagnosed in his early 20s. All that was said at that time is that it wasn"t cancer and not life threatening. My brother is now 59 and he manages his sarcoidosis well. In 2000 I was working as an emergency room (ER) nurse and had a horrible bout of severe joint pain, shortness of breath, erythema nodosum (EN) over my lower legs, and fevers. I was taken to the ER and initially diagnosed with lymphoma. Then a pulmonologist thought it could be sarcoidosis, I had a mediastinoscopy to remove a nodule between my lungs and it was positive for sarcoidosis. Since that time I have been treated with IV steroids, methotrexate, antidepressants, Plaquenil, oral steroids and most recently Remicade for the all over joint pain. At this point I am resolved that this disease has no clear cut answer. I try to live my life as fully as I can but, am limited by the beast called sarcoidosis. To my fellow sufferers, do not retreat. If your current doctor is not helping, seek another until you get some relief.

Comment from: Lucky, 55-64 Female (Patient) Published: May 02

I am a 57 year old female. I was just recently diagnosed with sarcoidosis. My first symptoms were almost a year ago. I attributed my fatigue and night sweats to stress and menopause. I am a nurse and used to be very active. When I started getting short of breath with normal activity I knew something more was wrong. I am lucky to work for a great Medical Center. It took only about 7 weeks to confirm this. I visited my primary care physician first and then the doctors got the ball rolling. I ended up having a lymph node biopsy by a thoracic surgeon. All of the lymph nodes in my chest are 2 to 3 times their normal size. I also have spleen and liver involvement. While in the hospital I developed cardiac arrhythmia. So far no skin or eye involvement. I do have increased joint pain especially in the feet and ankles. All the things I have read makes me scared. Worried about heart involvement, diabetes, bone density, weight gain.

Comment from: Julia, 55-64 Female (Patient) Published: April 16

I have had sarcoidosis for 27 years, developed when pregnant. I did refuse prednisone as first treatment, because of side effects and change in physical appearance. Fatigue was a large problem so I opted for the traditional Chinese herbal medicine for over 10 years with some valuable success. I managed a busy work and life in nursing in an area of oncology and bone marrow transplant. I did take intermittent doses of prednisone but it eventually raised my blood sugars. So I’ve been prednisone free for 3 years. Now I’m unwell with marked bone pain associated with nausea and vomits. Mentally I’m a bit vague, and I have dull headaches and fatigue. You can win with sarcoidosis; it does go through a cycle, just patience, with treatment either conventional or herbal or both will help. I have been fortunate I have no lung fibrosis, and walking a lot has improved my lung function. Imuran and methotrexate did not help, they increased viral illness and abscess formation. Generally sarcoidosis is a pest but has not stopped me living life well.

Comment from: Sandra B., 45-54 Female (Patient) Published: March 26

I was diagnosed with sarcoidosis 7 years ago, I was 40 years old. I went to the emergency room (ER) with extreme sweating and belly pain. After being there for just over a week, and running many tests, they gave me my diagnosis. I was put on prednisone for a year. During that year we found out it affected my liver and joints. I was off the steroids for about 2 years when I had another attack. This time it was not just my liver, it was my pancreas and digestive tract. I could not digest my food, it would just sit in my stomach. I lost a lot of weight as I was not able to eat anything for several months, just Ensure. So there was the prednisone again along with a few more to help me digest my food. That was another year on prednisone. That was 3 years ago, I am now having another flare up and the tests are set up for Monday. My skin and lungs are fine. I have had no problems with them from the start. I do have extreme pain all over my body and most days I can barely get out of bed. I also need to be careful about what I eat as I have pancreatitis caused by the sarcoidosis. This disease has disabled me. I used to be very fit and active, I ran, biked, swam, hunt, etc. Now I can do none of these. I keep on hoping for a cure, not just for me, for all of us that has this.

Comment from: Curada64, 45-54 Male (Patient) Published: March 18

I was accidentally diagnosed with sarcoidosis when I was having physical therapy for a back issue. Upon initial exam at physical therapy, a small lump was noticed in my elbow. After a month a progress exam showed that the lump had grown and I started developing a temperature. I went to a surgeon three times in my home town, and was told to stop bothering him and that it was scar tissue and fatty tissue (prior surgeries). After being persuaded by my physiotherapist to get a 2nd opinion, it was removed. Later an MRI of the chest revealed enlarged lymph nodes. I was medicated for almost 3 years with Plaquenil. After nothing showed in x-rays I switched doctors and was told that I was in remission. This is as of January.

Comment from: LaSeul, 55-64 Female (Caregiver) Published: February 04

I am a 54 year old female. I was diagnosed with sarcoidosis of lungs in 1992. I was tired all the time, lost weight and had a terrible cough. I am presently on oxygen at night, 10 mg of prednisone, and my blood pressure elevated due to the steroids. I am also on Advair Diskus 250 and I do take the albuterol breathing treatments due to having asthma as well. I will tell you that I take 1200 mg of fish oil daily to prevent aching joints and better mobility. I take NAC (N-acetyl cysteine) 600 mg daily for the lungs, Pau d'Arco, and goldenseal/echinacea to build a strong immune system which is very important. I also take chlorella which supplies us with the vegetable intake we need. For those with skin problems; try olive oil. If you can get to a gym visit the sauna to help open up and moisturize your bronchial tubes and sinuses. If on the oxygen, take a long bath while usage of oxygen up to 2 hours to help oxygenize your body. I am doing fairly well. I have to check my heart a little further; I've noticed my heart beats very rapidly after a bit of movement. Learn to pace yourself and please exercise as best you can. Don't be depressed or stressed. Be angry and fight back.

Comment from: Najramnos, 55-64 Female (Patient) Published: January 23

In early childhood I had continuous issues with ear aches, swollen glands in neck beneath jaw, pneumonia/UR (upper respiratory) infections and viral infections. I "grew out" of most of that, toxemia and 3 pregnancies. I was diagnosed with rheumatoid arthritis in my 4os, had prednisone/methotrexate for several years and diagnosed sarcoidosis myself 5 years after enormous weight gain/brittle bones. Within a year I was hospitalized with pneumonia and the doctor found sarcoids on my lungs. Shortly after I developed ulcer-type sores in my lower legs which spread over the right side of my body; itching painful growths emerged from healed ulcers sites. I have granulomas on healed areas of skin now. I have been to various local doctors regarding my skin ulcers, none of whom could tell me what these growths were; nor ran tests, till one finally referred me to dermatologist. He has just started tests and referred me to rheumatologist. It has been a long, frustrating and painful year. I moved to rural upper Midwest area 2 years ago and not one doctor requested previous medical records.

Comment from: Char24, 55-64 Female (Patient) Published: January 16

I am a 57 year old female. I was diagnosed with sarcoidosis in 1992. I was fit, active and quite healthy, until I starting running a low grade fever and I started to have extreme pain in my body from my waist down. I always used the stairs at work and I began to notice shortness of breath and fatigue. I had sternal pain I then got EN (erythema nodosum) on my lower legs. Right before Christmas the pain increased and I got a dry cough. I finally had to use the elevators and sit down several times during my shift. I had the week between Christmas and New Year off and right before I was supposed to go back to work the EN got really bad and was causing more pain. I went to see a doctor and he explained that you can get EN for many reasons but because of the symptoms I was experiencing in my chest he ordered a chest x-ray. It showed many enlarged lymph nodes. The doctor referred me to a pulmonary specialist. He performed a bronchoscopy but the findings were inconclusive. I was then referred to a thoracic surgeon. During the time I saw the first doctor up to when I had a mediastinectomy, it was over 4 months. No doctor would allow me to take anything for the pain but Tylenol, because if the diagnosis was lymphoma it could cause more problems. I was put on 50mg of prednisone for several months and then the dosage was lowered and after taking steroids for a year I finally was weaned off them. I got along quite well for 2 years and then I was in and out of the hospital with pancreatitis. My liver enzymes were elevated and after having a scan it showed my gallbladder was not working. I had my gallbladder removed, had surgery to cut the duct so it would stay open and drain. I was back on the steroids. Finally about 6 years ago I made the decision to never take steroids again. Then 2 years ago my bones started to break down and I had a hip replaced and had some of my cervical vertebrae fused. I have gastroparesis, myelomalacia and some days I can hardly walk. My eyes are starting to burn and hurt and it has affected my vision. My equilibrium is bad.

Comment from: 55-64 Male (Patient) Published: January 06

I was diagnosed with the most badly scarred lung fibrosis the pulmonologist had seen, about 3 years ago. I also had atrial fibrillation. Prednisone and other medications seemed to help until about 6 months ago, I developed a hacking cough, started getting tired, losing weight, had joint pain and some chest pain. I have many other diseases also as heart beat now is too low, shock did not correct, I am dizzy, I have memory issues, renal kidney disease and rheumatoid arthritis among other things. I am getting discouraged especially since doctor says fibrosis has advanced to the stage of my needing to seek help at a treatment center. I am a black male and understand that this disease is worse on this race.

Comment from: thewife, 35-44 Male (Caregiver) Published: December 17

My spouse was diagnosed with sarcoidosis 5 years ago in his lungs. When he gets sick with flu, it's severe. We have noticed that that the flu or cold is much worse with him than the rest of the family. When he gets sick, it lasts longer, and he is unable to leave the bed. He is now taking three inhalers a day, which help a lot. He was put on Biaxin, but he suffered from rare side effects from it. (Dec 2013) He can't hear. He was put on a nasal spray. It doesn't seem to work. We are in a more remote area, so it makes it difficult to obtain proper help from the right practitioners.

Comment from: Mary, 45-54 Female (Patient) Published: December 16

I was first diagnosed with sarcoidosis when I was 36 years old. I first noticed lumps with bruises on both of my calves. Every morning I would wake up with a coughing fit for weeks and then both my knees and feet were swollen to the point I couldn't fit into my husband’s size 11 shoes to get to the clinic; the pain in my knees was unbearable when I moved. I had to see a specialist and he told me it could be 10% lung cancer or 90% sarcoidosis and sent me for a biopsy. They removed a piece of my lymph nodes and found out it was sarcoidosis, I had never heard of it before. I was put on prednisone because of fatigue and no energy at all. I had 4 small children to look after back then. Now I'm 51, I developed pneumonia 6 to 8 times in the past 10 years and each time it's was very difficult to bounce back. My last CT scan couple of years back showed I have fibrosis. Now I'm short of breath, simple things like walking is a struggle, severe chest pains at times, no appetite to name a few. I was put back on steroids, inhalers, even put on antidepressant pills to calm me down when I'm struggling to breathe. Prednisone no longer works like it once did.

Comment from: sdy47, 45-54 Female (Patient) Published: October 28

I am an African American woman diagnosed with sarcoidosis in June 2013. I had a dry cough and shortness of breath for over six months. A chest x-ray was done which showed the mass. A biopsy was done and I was given the dreaded diagnosis. I was put on prednisone for 4 months which worked until they weaned me off. The sarcoidosis is now in my eyes and although no one has said I think it's in my heart. I have a rapid pulse and an irregular heartbeat. And I still have trouble breathing. I have sores around my mouth and nose. I can't sleep or eat and I am tired all the time. I just want it to go away.

Comment from: brownsugar, 55-64 Female (Patient) Published: October 28

My right eye became very, very teary. I constantly dried it all the time. I went to my eye doctor and he asked me about a rash on the outer circle of my nose. I thought it was fungus, he said it looked like sarcoidosis, something I had never heard of. After being tested, it was just that. I have skin irritations that itch very badly, in areas you may think you have something else. When I sneeze or yawn I get cramps in my neck that brings me to a halt. I am to see a new doctor soon, I hope she can help me deal with this pain that has almost taken me from my husband.

Comment from: SLaing1979, 25-34 Male (Patient) Published: October 15

I am a 33-year-old male. In May 2012, I experienced swelling in both of my ankles at the same time. There was some pain, when walking or placing weight on my ankles. I am a short distance runner (10-21 Km). Some swelling with new shoes or over training happens. This persisted for about 1.5 weeks, so I went to the doctor, fearing possible heart issues or circulation issues. Doctor examined my feet, X-rayed for possible bone damages due to my running. Nothing showed up there, so he did a chest X-ray. A black mass showed up on my lungs. He said lymphoma or sarcoid as possibilities, but need further testing. He did the CT Scan, blood work, liver profiles, and the ACE blood work. Finally he thankfully ruled out lymphoma and any possible heart or circulation problems. He told me I experienced the symptoms of sarcoidosis. He explained the disease, which there is not much info about. In December 2012 I was diagnosed with bronchitis. I had a hard time trying to get over it. About 2-3 weeks, with a puffer of Ventolin to help with night breathing. Same doctor explained that any lung related disorders or diseases will be that much more difficult with sarcoid! I'm still running, and have not had symptoms of sarcoid since my first one over a year ago. To my knowledge it does not affect my aerobic abilities.

Published: July 25

I am a 51 yr old black woman and I have sarcoidosis. I was misdiagnosed initially for 3 yrs. (1981 - 1984) my case was severe. At 24 yrs old I had sarcoid in my bones (from head to toe), my skin, and nasal passages. I was treated with prednisone for 20 years. At 24 yrs old, my joints were brittle and had holes. Granulomas formed on my face and I have had 3 surgeries on my tear ducts (both eyes). I happy to say my bones have rejuvenated, (medically impossible), I have flawless skin, and I can breathe thru my nose. I have been off prednisone to for 3 yrs. I’m now a beauty consultant and I feel good!

Comment from: tejpreet, 25-34 Female (Patient) Published: April 24

I have lung problem and worried it is sarcoidosis. I have had continuous dry cough for 2 months, slight migraine and laziness since 5 years, and grey hair.

Comment from: TSP, 55-64 Female (Patient) Published: December 22

I was recently diagnosed with sarcoidosis. At first the doctor thought I had Hodgkin’s lymphoma but after a biopsy of one of my lymph nodes they found I have sarcoidosis. I have tumors in almost all of my lymph nodes. Some days the pain is overwhelming and then other days I it isn't so bad. The fatigue is very hard to deal with. I found when I am not on the prednisone I hurt a lot more. I am not sure what to expect in the future. I am worried the tumors will continue to grow.

Comment from: mary, 55-64 Female (Patient) Published: April 08

I am a 57 year old female and have been living with sarcoidosis since 1995, it makes me weak all of a sudden and takes my strength away. The same doctor for years has been telling me it's active and bumps up my steroid but so what, I am feeling like I am happy and ready to go but it has me feeling weak with no energy today. I am seeing another doctor this month, but one thing I am going to forbid people from smoking in my house and I suggest you all who have it do the same. Because this doctor today did ask me if am I around someone that smokes and sometimes I am around people that smoke.

Comment from: Lee, 65-74 Female (Patient) Published: February 19

I was diagnosed with sarcoidosis approximately 30 years ago. The interesting thing is that my mother, sister and son have also been diagnosed with the same. My son who is currently 42, has had 2 pulmonary embolisms (PEs) which it was suggested were due to sarcoidosis.

Comment from: 65-74 Female (Caregiver) Published: October 30

My wife was getting regular chest pain with exercise and I presumed that this was due to inflammation of her lung lymph nodes (she has sarcoidosis with lung involvement). I decided to try a benign experiment with her by treating her using a steam inhaler with a dab of medicated ointment (Rawleigh) containing anti-inflammatory eucalyptus oil, camphor and menthol on top of the water. After a few treatments she started to get better and now she is symptom free with no further use of the inhaler. It was worth the try.

Comment from: L Corkery, 65-74 Female (Patient) Published: October 21

I was diagnosed with sarcoidosis at age 27. I had lymph node removed. My mother also was diagnosed with sarcoidosis. She was in her 50s. I have suffered for years from iritis. Most recently I developed granulomas on my knuckles.

Comment from: Mags, 55-64 Female (Patient) Published: March 06

I was diagnosed with sarcoidosis 4 years ago and am still dealing with it. I do know that if I get fatigued my symptoms get worse. Also, I get severe laryngitis on the onset and of course, the cough.

Comment from: nicedreams, 45-54 Male (Patient) Published: January 17

After about 5 years I have been diagnosed with sarcoidosis, and having a lung biopsy. I have swelling in feet and ankles and am in extreme pain to walk, almost the same as gout symptoms. I also have red spots around the inflamed area.

Comment from: Grant38, 35-44 Female (Patient) Published: November 07

I was diagnosed with sarcoidosis in August. I didn't have any symptoms, but went to the doctor for blood pressure follow up. They took my oxygen and it was 68. They immediately admitted me to the hospital, where I spent 8 days taking all types of test. They first said I had congestive heart failure, then cancer. Then they came up with sarcoidosis. I'm currently only on oxygen throughout the day to make sure it doesn't drop, which has done the trick so far.

Comment from: aliceanne, 65-74 Female (Patient) Published: October 31

I was born in 1946 and first diagnosed with Sarcoidosis at the age of 4. I don't remember anything about that. At the age of 25 I was hospitalized with sarcoidosis. I spent 5 days in the hospital. Every intern and doctor met with me. Sarcoidosis is rare, so I was told. I was never treated with any drugs, just required bed rest. I haven't had an episode since. Sometimes, depending on the doctor, I have received different evaluations. Weird disease!

Comment from: Wilma, 45-54 Female (Patient) Published: October 31

When I was diagnosed with sarcoidosis my doctor told me everything was fine and I wouldn’t have to see him again even though I told him I smoked. Now 8 years later, I went to the doctor for a different reason and was told that I have pulmonary fibrosis, a fatal disease with no way to treat it. So, if you develop sarcoidosis I suggest you get a chest X-ray at least once a year; I wish I had.

Comment from: kmc, 45-54 Female (Patient) Published: October 24

My sarcoidosis started in my liver, spleen and lymph nodes, not in my lungs. It was treated with 60 mg of prednisone and methotrexate. It appears it has returned after 8 years, but has returned involving my lungs as well.

Published: July 25

I am a 29 year old female that was just recently diagnosed with Sarcoid. I have several enlarged lyophobes in my lungs and shortness of breath, hip pain and shoulder pains. I went through all of the x-rays, CT scans, pet scans, and 2 biopsies. The first doctor that I saw wrongly diagnosed me with Lymphoma, wich is cancer. When I visited a pulmonary Dr. I was told it was not a positive diagnoses, because the biopsies were not done yet. I went a month wondering what was wrong with me. And scared my family and friends with the idea that I may have cancer.

Published: July 15

I am a 52 year-old male. I have extreme shortness of breath on exertion, constant fatigue, night sweats, skin lesions, etc. I was diagnosed with sarcoidosis in 1998 after two years of tests, X-rays, CT scans, lymph node biopsies, you name it. I finally found a specialist who was able to figure out what was going on. He put me on Advair, prednisone, and an Albuterol inhaler. The prednisone went from declining dose regimens to a constant 25 mg per day to control my lung and skin lesions. After two years of this, I developed steroid diabetes and gained a lot of weight. He suggested the Cleveland Clinic Sarcoidosis Center. They now have me off the prednisone. I am now taking methotrexate, which seems to be controlling the disease.

Published: June 03

I was diagnosed with Sarcoidosis in 1984, this after three years of trying to get someone to listen to me and stop referring me to a psychiatrist. For three years I walked around with an increasing inability to breath and fatigue on exertion. The puzzler was that whenever I went to the doctor those symptoms were not present or a particular episode had resolved itself. Therefore, no one believed me, and being a woman did not help. Generally, when a woman presents with symptoms that are vague and unknown it is assumed that she is either hypochondriacal, or psychiatric. Needless to say this delayed the diagnosis and eventual treatment, which came as a God send because by the time I was treated I had lost 32 pounds and was loosing weight at about eight pounds a week. The current problems with Sarcoidosis are the skin involvement which I have had for the past 10 years and no one seems to think needs to be addressed. I also experience terrible arthritic pain in my feet ankles and wrists, as well as, heart palpitations. When I was young any discomfort or symptoms was often attributed to the Sarcoidosis, but as an older woman with this disease I can no longer assume that symptoms are Sarcoidosis related. For the most part I have learned to accept the fact that I will always feel tired and will be depressed from time to time and that no one will really take any of these symptoms too seriously.

Published: May 29

My major symptoms are night sweats, shortness of breath when I reach a certain weight and when I am sleep deprived. I was diagnosed in my twenties and I find the struggle or the symptoms more accented now that I'm fifty and the weight is more of a struggle along with the added heat to the night sweats.

Published: May 29

I am have been suffering from sarcoidosis for the past 6 years that I know of. It was discovered from a skin lesion, which I originally thought was a severe case of acne. I visited a dermotologist and was diagnosed with this dreaded disease. Since then I have encountered arthritic pain in most all my joints. I have broken two fingers and an elbow bone ( how do you break an elbow bone? -I don't know but I did) while working as a utility worker: All of which are directly related to the sarcoid. Currently, I am taking 5 prescription medications for the disease. My Bones are deteriorating, rapidly it would seem, and I am only 42 years old. If there any remedies that anyone is aware of, I would be very interested in knowing about them.

Comment from: Tibbetts, 35-44 Female (Patient) Published: December 02

My bad experience with sarcoidosis is shortness of breath, dry scalp, eyes burning, and lately problems with my right knee. My lungs and kidneys have been affected.

Comment from: Jolly Carol, 65-74 Female (Patient) Published: August 20

I was a truck driver hauling produce and apparently picked up the spores of fungi when loading produce. I got sick in 1993 with flu-like symptoms. I had swollen wrists and ankles and had red spots all over my body. I was put on large doses of antibiotics and sent home to my doctor, who said I had a bacterial infection. I got better, but later on, I developed swollen lymph glands and had a dry cough and again swollen ankles, night sweats and flu-like symptoms. This time the doctor did an X-ray and discovered a dark mass in my lungs. I had a bronchoscopy, which still did not answer what was wrong. Only after they did a medianoscopy did it finally tell them I had sarcoidosis.

Comment from: pgbbruce, 55-64 Female (Patient) Published: June 12

I have had a dry cough off and on for the past 6 years. Had pnuemonia 3 years ago and diagnosed with it again this past March 2013. I also have chronic pain but do get some relief from taking ibueprofen. It is now June 2013 and I still have double pnuemonia. My doctor referred me to a Pulmonologist. He ordered CT scans and lung sample. I was reading the symptoms and I do have severe shortness of breath, inflammation, and I just realized I have a skin rash that will not go away. Can't wait to get rid of this sarcoidosis. I know that's what it is since I have the symptoms.

Comment from: sandydee, 45-54 Female (Patient) Published: May 20

I had a dry cough that lasted for six months. I was treated with cough meds. Two months after the cough stopped, I got a rash that took four months to clear up. Then came shortness of breath and fatigue. This week I go in for a biopsy.

Comment from: gina, 55-64 Female (Patient) Published: April 18

I have just been diagnosed with sarcoidosis. I have had unexplained weakness of my core, back, and legs, especially the left leg. As the result of a muscle biopsy, the findings were sarcoidosis. I am astounded. I don't fit the age range and my symptoms certainly don't have any connection to what I would have expected – no lung problems, no lesions, or no cough. I haven’t heard of anyone having any experience with sarcoidosis settling in muscle tissue. I am in the process of getting more evaluations, of both my symptoms and of the diagnosis. Even my neurologist is puzzled – I think he was expecting a diagnosis of one of the muscular dystrophies.

Published: August 15

I'm 45 and reside in NYC. I was working in NYC when the towers were struck by a plane. My doctor believes that I was exposed to the dust exposure at 911. I started having a chronic cough and at times felt faint. I went and received a check up and discovered from a lung biopsy that I have sarcoid of the eyes/lungs, and Neuro-Sarcoidosis of the brain. I was immediately placed on prednisone, 80mg intravenously. Thereafter taking the medication I have been diagnosed with seizure disorders and sleep apnea. I'm feeling much better than initially. I'm currently on disability.

Published: July 08

My daughter has a very bad case of sarcoidosis. It is now in 3 different spots of her brain and also has destroyed over half of her thyroid gland. If it does not slow down she will have to have her thyroid gland removed. And there is a possibility of Kemo for the brain. Does this all make sense? She has been in 24 hours a day severe pain, one of the spots in her brain where she has it is inher pain center.

Published: July 02

Reading all these comments, I consider myself lucky. While I have had sarcoidosis actively for the last 22 years, my symptoms and disease vary. I do not take medication except for pain when needed as I have "inflammatory" migraines, which I believe are associated with the disease. I've had it all: fatigue; my liver enzymes are up; gall bladder problems; rashes; Bell's palsy; arthritis in my wrist, elbow and ankle; migraines; swelling of my finger; swelling of my parotids, etc. I am 52, and I go to the gym four days a week. I do lift weights and this has kept my bones very strong. My doctor is surprised at my bone density. I have gained weight since my younger days (who hasn't?), but I look OK for my age. I try to eat well, keep active, and keep positive. If I get so fatigued, I take a day off. I do get depressed, but there is more to make me happy. I keep going. Lately my pulse is up, but my blood pressure is OK. My doctor is not worried but will keep an eye on it. I am a white female and not in any of the ethnic groups quoted. Go figure!

Published: July 01

I was 57 when I was finally diagnosed. I was coughing uncontrollably and losing a pound a day. I was dizzy and falling down. I had night sweats and some fever. They thought it was lymphoma, but when they did the biopsy they found sarcoidosis. I was put on strong prednisone for a while and the dose lessened until a year had passed. I developed diabetes from the sarcoidosis. My blood sugar went into the 500s. I am better now, but I’m not sure what other things are from the sarcoidosis.

Published: June 25

I was diagnosed with Sarcoid in 2003 at age 25. I was always a healthy, white female. What they thought was pneumonia that didn't go away after 6 weeks of medicine they did further testing. I had knots on my knees and ankles. They decided to remove my lower left portion of my lung because it was destroyed with infection and lymph nodes removed. I also developed Sarcoid in my eyes. I am now showing signs of glaucoma at age 31. I am not currently on any medication but it's a very scary disease because it could come back and anytime and they do not know the cause.

Published: June 25

I have had a chronic cough for 15 months, sweats, weight loss, loss of appetite, "shattered lung" CAT Scan, 2 different lung surgeries and the list goes on. I have nearly every single symptom that is on this site and I am still undiagnosed. Three special field doctors now fear that it is now in my heart but will not order the proper tests or send me to the proper doctor nor admit me. The last doctor stated that my lungs where not functioning properly, that was last week. No tests ordered, no ambulance. I was having a hard time breathing, blood pressure was high and so was my pulse. I am disgusted with the medical community. I have some 15 doctors right now and no one is willing to do a thing. I have chronic EN on my legs. I am in so much pain and so tired. I wish I could get help, now. I hope you have a better story.

Published: June 17

I was diagnosed with this disease 7 years ago. I am 38 and an African American female. I have just been told that new health issues I am dealing with have been contributed to this disease showing itself in my colon and abdominal area. I suffer from a hip deterioration due to prednisone use.

Published: June 17

I was diagnosed with this disease 7 years ago. I am 38 and a african american female.I have just been told that new health issues i am dealing with have been contributed to this disease showing itself in my colon and abdominal area. I suffer from a hip deterioration due to prednisone use. I am miserable.

Published: June 12

I work in a welding shop, I don’t weld very much anymore, in my work area there is a lot of brake cleaner used. When I breathe this I have an instant shortage of breath and instant headache. I was just told I have sarcoidosis.

Published: June 09

Has anyone had experience with Plaquenil reducing pain but exhibiting severe personalities changes after being on the drug for a month. It helps my husbands pain and ambulation but he has become a manic person with very little insight into his actions or others feelings. Saying very cruel comments to loved ones is very hard to take. Did anyone have similar problems on the drug. My husband did just as well on Methotrexate with no behavioral changes but the specialist thought they would start with the Plaquenil.

Published: June 09

I have had disseminated histoplasmosis for over ten years lately. I have been told that I now have sarcoidosis is it possible for sarcoidosis to be mistaken for histoplasmosis?

Published: June 05

I was a very active and much younger appearing person up to last fall, when I celebrated my 81st birthday at Thanksgiving my illness began, with fatigue, no appetite whatsoever, no thirst, a dry cough, and I spent about 2 weeks in bed, just existing. Then felt better, spent Christmas in Portland with our children, but there the same symptoms returned. During the drive home I was close to causing an accident several times. Back to bed, with a lasting dry cough, and bad arthritic pain, lost a lot of weight also. Then in Feb 08 the serious stage began. I became so weak, that i would collapse all of a sudden, and then was unable to get up. We had to call 911 twice with trips to the ER. This time I remained in the hospital for one week, with many specialists being consulted. Yet, no Diagnosis and I was sent back home. In early March back to the hospital, this time for 2 weeks, and every conceivable Specialist was called in for consultation. They called me the Million Dollar test baby! And finally back home! The day after that a bone marrow biopsy was ordered, and several days later I finally got the diagnosis: Sarcoidosis. By then I had lost 35 pounds. Now I am being treated by a Rheumatologist, started on a pretty high dose of prednisone, and a miracle happened, the next morning I awoke free of all pain, and with some energy! By now I am down to 30mg of Prednisone, but start having the arthritic pains, also am short of breath after the slightest exertion, also after talking. My Dr. appointment is tomorrow, so I will report all. After reading a lot on this condition, I see that most people are in their 30th or 40th when this begins, and I am twice their age. But since I had bouts of arthritis on and off since my 30th, all through my life, it might have been a forerunner of the serious condition I now have?

Published: June 03

My problem with Sarcoidosis actually started with Uveitis. After 2 years of treatment for that (Prednisone Drops), an Ophthalmologist in Columbus, Ohio decided to check for Sarcoid condition. I take Prednisone 10mgs a day, have had a lentectomy and a vitrectomy on my Right eye and will probably have to have it on my left. I always know when I am getting an "occurrence" because I get unbelievably tired. Usually, when I feel this way I take off from work and rest. All this happened just one day in 2001 (3 months before my 41st birthday) when I awoke with a red and light sensitive eye (I thought I had pink eye). I remember thinking back that I always had little coughing spells (where I had difficulty breathy and a dry cough) but it didn't last long.

Published: June 03

I feel tired and weak all the time although I use to be a very active and focused person. I can’t remember very well and constantly feel that I need to see a doctor. At first I thought it was low blood sugar or blood pressure but all of those things are 100%. The doctors can’t find anything wrong with me. I’ve decided to accept how I feel and just live with it. The problem is that when I do develop a "real" illness I will properly wait until it’s to late to see a doctor. I’ve been on cortisone treatments twice. The first time I got T.B and had to have a brain operation to remove a T.B abscess. Since my op I’ve gained A LOT of weight and can’t seem to stop eating.

Published: May 29

I was diagnosed with auto-immune hepatitis at age 16.I was on predisone for 26 years. After going off prednisone, I went through terribly painful symptoms and was given a diagnosis of Fibromyalgia. That was in 1996. I was prescribed Elavil, Lasix and Tylenol #3. In 2000 my Ophthalmologist took me of contact lenses because the veins in my eyes were enlarged In 2004 I suddenly developed rashes and spots on my legs/shins and the skin on my face around my cheeks visibly darkened. I had chest tightening and dry cough and very itchy skin on my calves and shins In 2006 my joints were very achy and sore all the time. My wrists esp. would swell and ached for days at a time. In 2007 my wrists hurt so bad I had to go to the hospital’s emergency dept. Wrists were xrayed and lesions were seen on the left wrist xray. I had bone scans, MRIs but no-one could diagnose what the lesions were. My orthopedic surgeon finally performed an open biopsy. Cancer was eliminated and though no diagnosis was arrived at I was told the bone had degenerated and splintered. A year later I was referred to an Internist who confirmed the diagnosis of sarcoidosis after the ACE blood test. This was in 2008 a year after the biopsy. I refused to go on prednisone or naproxen. I have horrible purple bruises on my shins and take between 4-6 Tylenol #3 daily. Are all the conditions related and will sarcoidosis be the final diagnosis or will it develop into something more debilitating and sinister? What should I look for next? Sorry for the lengthy comment but I believe it is important for you to know what lead to this current diagnosis.

Published: May 29

A friend bakes donuts for a living & has developed a yeast infection of the lungs & over the last 5-6 years has been hospitalized 3 times. He is currently in the hospital for pneumonia. Symptoms are chronic coughing, spitting white sputum, weight loss & fatigue.