Patient Comments: Sarcoidosis - Symptoms


What symptoms did you experience with sarcoidosis? Submit Your Comment

Comment from: Na502, 45-54 Female (Patient) Published: July 30

Well, my experience with sarcoidosis was and now again, I am fatigued and tired all the time with no energy, nausea, and liver swelling with bad pain. I stay congested, have dizziness and have fainted. I have aches everywhere, bone pain and feel as if someone has run over me time and time again. I have rashes, also shortness of breath and heart palpitations, but I can’t let it get the best of me!

Comment from: Thomas1029609, 35-44 Male (Patient) Published: June 14

I am a 36 year old male. End of last year my ankles and legs became swollen, doctors treated it as a sprain and ignored the rash on my legs. I was just told to rest or given some antibiotics that lasted a few days then symptoms came back and got worse. It got to the point every joint and muscle would hurt and no one took me seriously on the pain. I admitted myself to the hospital and after many tests they suspected sarcoidosis. It was initially treated with prednisone that reduced the swelling and pain, then I had to wait for a bronchoscopy and today they have confirmed it definitely is sarcoidosis. I still suffer shortness of breath, fatigue and muscle weakness, it is affecting my work and worsening my depression further affecting my ability to get a new job.

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

I suffer from severe fatigue and a tight chest with sarcoidosis. I experience swelling, bloating and weight gain (may be due to cortisone tablets). Further I have skin lesions and hives. There are 2 smallish lumps or glands near my right shoulder bone not always palpable and with a fullness in this area. In my left knee is a lump that moves and has grown and in my right knee there is a lump almost half the size of the one on left knee. I have pain in my skeletal system, in particular in my feet and an awkward pain in toes. Even in a sitting position I feel fleeting episodes of dizziness. Even after a night's rest I wake up with swollen feet.

Comment from: Sandyk, 45-54 Female (Patient) Published: May 01

With kidney stones I had pain building in severity in back, side and groin, was nauseous and faint. Eventually I had excruciating pain, similar to contractions.

Comment from: GranDad David, Published: October 31

My Paget's disease was discovered in a routine blood test due to the elevated level of the marker enzyme. At that time I had no other symptoms. A few years later I had a bone scan which confirmed some deterioration in the pelvis.

Comment from: 30Sucks, 45-54 Female (Patient) Published: April 23

I am a 34 year old male. Recently, I have done my health checkup as being in my 30s. It brought surprise to me that my homocysteine levels are 49.2. So I consulted with the doctor and he asked me to do regular exercise and control my diet.

Comment from: lucinda, Published: May 23

I was just discharged from the hospital from the diagnosis of rhabdomyolysis. I had extreme diarrhea and was very confused (my doctor called it delusional). I could not get out of the bathtub for hours and sustained a number of injuries trying. When I did get out, the diarrhea was worse and my confusion came and went. I was given massive fluids in the hospital, I had blood in my urine and stool, and was very weak. The confusion resolved, my friends and doctor said I was beginning to look normal. I had had kidney issues when I was born and terrified of dialysis but there was no talk of that. I was given double full IV fluids in 2 IVs for 4 days, monitored for cardiac issues and taken off blood pressure medicines. I follow up with my doctor tomorrow. My thighs hurt like crazy and getting up and down is very hard. On the last two days in the hospital I was started on physical therapy and assessed for a walker, cane, bedside commode, etc. I am drinking water and sugar free power drinks (32 ounce) hourly. I have no appetite and still do not urinate but a couple of times a day.

Comment from: Mark, 25-34 Male (Caregiver) Published: May 04

I found great luck with the Canker Spanker. It heals cankers so fast and the bonus is it prevents them too!

Comment from: connie1smith, 55-64 Female (Patient) Published: October 25

I began with arthritis, inflammation, fever-like, and flu-like symptoms in 1995. I was told by a rheumatologist I probably had an attachment arthritis disease. I was finally diagnosed with sarcoidosis in 1997. My lymph nodes were swollen and my dermatologist wanted a biopsy. It went dormant for a while but in 2015 it manifested as granulomas on my nose. I am beginning a Plaquenil regiment.

Comment from: ambrosia211, 45-54 Female (Patient) Published: October 03

I am a 53 year old wife and grandmother that is on crutches full time. I did not have any kind of injury or IV. One night I developed what appeared to be a spider bite looking rash. However, no skin had been broken. It was in the inside of my arm where one might place an IV. My symptoms were bright red rash, hot to the touch, swelling of my entire arm and a rock hard spot under the skin. For 2 days I endured pain, but on day 3, I went to urgent care. A PA (physician’s assistant) told me that it looked like cellulitis, and gave me some seriously strong antibiotics. I went home and looked up cellulitis online but what my rash looked like and the pictures I looked at were very different. I kept searching and found my rash online. Not cellulitis, but phlebitis. Now I am on day 5 of antibiotics, and all I feel is a small amount of heat from rash, and a swollen vein. Still painful but at least I can now move my arm and it can be touched. Still unsure what caused it.


The term arthritis refers to stiffness in the joints. See Answer
Comment from: Clark Trivett,Phd, 45-54 Female (Patient) Published: September 27

The following worked for me when I had a foreign body in the ear. With your head over the bathroom sink, put ear drops in the ear canal. With warm water in an ear cleaning bulb, spray water in the ear canal as briskly as possible. It may take several bursts of water, but the foreign object will eject into the sink.

Comment from: tracy, 45-54 Female (Patient) Published: July 26

I have had 12 surgeries in as many years and now have staph infection all over my skin. It started 2 years ago and traveled from my legs all the way up to my arms and back and breasts. I am sick most of the time and get sores in my mouth, nose and private areas. I am allergic to sulfa drugs so many antibiotics have been tried. I am sick of this! My multitude of problems range from cancer to hernias and removal of 7 feet of intestine. I got turned down for disability. I am going to die from this! I moved from Florida to Ohio and my new doctor's answer is to cut my pain medications to about a third and trying to take me off. No hope left for me, my pain is unreal!

Comment from: MickieD, 45-54 Male (Caregiver) Published: June 07

I received a diagnosis of irritable bowel syndrome (IBS) in my late 30s after finally seeing a gastroenterologist. He did a colonoscopy to rule anything else and diagnosed my pain and diarrhea as IBS. Before exams in graduate school I usually had bad flare ups. My family doctor said it was just how I dealt with being nervous. I used to make a joke about how where other people popped Valium when they were nervous I popped Imodium!

Comment from: LE, 45-54 Female (Patient) Published: March 15

I am 51 years old and was diagnosed 5 months ago with sarcoidosis. I thought I had Lyme disease due to all the join pain, swelling, and night sweats. The most noticeable pain was in my legs, upper and lower and a day later, red bruises appeared on the underside of my forearms; my wrists were swollen and painful too. My primary care doctor diagnosed it very quickly, not so much due to the swelling and pain, but due to the red bruises on my arms and around my ankles. She ordered a chest x-ray which showed something on my right lung so she then ordered a CAT scan which she confirmed was sarcoidosis. She put me on 40 mg of prednisone and referred me to a pulmonary doctor to monitor me since it was on my lung. I was on 40 mg for 2 weeks, then 30 mg for 2 weeks, then 20 mg for 2 weeks, then 10 for 2 weeks then 5 mg for a month. I felt great on 40 mg of prednisone, I didn't have one ache or pain! I did have trouble sleeping on that dosage so I took melatonin. It took 10 days for the swelling to go down in my ankles. I have been off of prednisone for 1 month. I walk 2 miles a day and try to drink lots of water. I am going to try taking fish oil based on what I read here and I do take an extra dose of vitamin D but after reading here that I shouldn't with this disease, I will ask my doctor about that. I am also going to increase my vegetable intake. I have no idea what caused it, something in the air I guess. I work at home and live in upstate New York where the air is pure. I am starting to think it was from leaf mold since I got it in the fall after the leaves all fell and we do have a camp in the woods. It seems to be at bay but every time I get an ache or pain, I think oh no! I will visit this site regularly for support.

Comment from: Jenn, 45-54 Female (Patient) Published: March 08

I was officially diagnosed with sarcoidosis after a blood test revealed I had a high calcium level with severe dehydration which was exacerbating already present stage 3 kidney disease. At first I was diagnosed with cancer (so scary) due to what appeared to be metastatic lesions in my lungs which were visible on a CT scan. But blood tests revealed I had a high active form of vitamin D which was causing the calcium spike and a high ACE level which confirmed sarcoidosis which was causing the high active vitamin D level even though my regular vitamin D level was low. I had been taking high levels of vitamin D prescribed by my nephrologist too which is a big no-no when you have sarcoidosis but I didn't know I had it at the time. I believe I have had this disease for most of my life with intermittent bouts of various symptoms. I've had gastrointestinal issues, dry cough, rash under nose, sores in nose and mouth, hearing issues, eye issues, asthma, migraines and neck pain, back pain, joint pain, foot and toe pain, numbness in fingers, sinus issues, heart palpitations with chest pain, cold/night sweats, weight loss, chronic anemia, fatigue and now the worsening chronic kidney disease that I have been experiencing for the past decade has been determined to be caused by sarcoidosis. Prior to the diagnosis I had taken myself to many doctors including naturopaths explaining that I felt awful and no one was able to make a diagnosis, not even my internist of over 25 years could put the pieces together. The naturopaths all made it worse by putting me on vitamin D supplements. I have been misdiagnosed with several disorders including IBD (inflammatory bowel disease), plantar fasciitis, hair line fractures, gluten intolerance, hypertensive kidney disease, etc. I have always been sensitive to strong smells like moldy, musty odors and dust. Also, a lot of my symptoms would occur during times of emotional stress. Since my diagnosis in 2014, I avoid vitamin D and limit high calcium foods. I was on prednisone for 9 months and it helped slightly. I have been off of it for the last 8 months and I am experiencing ridiculous pain in both feet, neck, and finger joints. Just searching for a natural way to kick this into remission and trying to stay positive. This too shall pass.

Comment from: 55-64 Female (Patient) Published: January 11

I am a middle aged woman and have been diagnosed with sarcoidosis. My biggest problem is the inflammation in my eyes! I am on methotrexate, now 25 mg and prednisolone 10 mg and I have had episodes of eye inflammation and pain in the eyes almost every other week for eighteen months. I am hoping that now methotrexate is going up in dose that it will control it. I also have had a lot of back pain recently and have wondered why night sweats, as I am past menopause. I noticed with interest that both these can be symptoms of sarcoidosis; fatigue also. Every now and again I will have joint swelling and pain, which stays for a few days then thankfully goes. I do not like this disease!


Arthritis: 16 Bad Habits That Cause Joint Pain See Slideshow
Comment from: Austin Sarah, 65-74 Female (Patient) Published: November 18

I have had sarcoidosis since 2003. I thought I was having a heart attack but it was just the onset of the disease. Although I was diagnosed in 2003, it was dismissed as insignificant to my health until I went to a specialist in 2008. By that time I was very, very sick and had been misdiagnosed as having multiple myeloma. I had explosive bowel movements, bloody noses, and incredible malaise. I didn't know it, but my lungs were gradually being affected. I also had a metallic taste in my mouth. A persistent pathologist cleared it up. I went to the best sarcoid center and started on prednisone.

Comment from: Vanessa, 55-64 Female (Patient) Published: August 27

In my 30s I was getting small lesions on my face around my mouth and eyes. I went to a dermatologist to address the skin issues and was diagnosed with sarcoidosis. I was referred to a pulmonologist, did not have other symptoms, and chest x-rays were fine. I was supposed to follow up routinely and did not. I had just quit smoking my 1st out of 3 tries. Thinking back I continued to have symptoms, the cough mainly. I returned to smoking and quit once again and smoked until 2005. I was diagnosed with breast cancer in 2004, for the treatment and plastic surgery I had to quit smoking again; 3rd of 3 tries. After diagnosis and treatment for breast cancer, a year later the shortness of breath and cough I thought was from smoking continued. The cancer doctor sent me to a pulmonologist and it was the sarcoidosis again. Initial treatment was with steroids and I found them intolerable. Later methotrexate was prescribed, which worked well. The year 2014 was a very good year for breathing and fewer symptoms. In 2015 I had pneumonia after that treatment (antibiotics and prednisone), and I ended up in the hospital again because I could not breathe and my oxygen levels were low. They sent me home on oxygen during exertion. Two weeks later I had a lung spontaneously collapse. After a week in the hospital with a chest tube I am home reading up for my next pulmonary doctor visit in September. Symptoms have generally been shortness of breath, repeated bouts of bronchitis, exhaustion, skin nodules, productive and non-productive cough.

Comment from: Mickey, 65-74 Female (Patient) Published: July 21

I am a 70 year old female. I was diagnosed with sarcoidosis (tests and a biopsy) 10 to 12 years ago because I got tired of getting bronchitis (every time after recovering from cold or flu) so bad I would cough so hard it would empty my stomach. That is still my only concern. I've had no pain for 10 years. On July 16 I had level 9 pain dropping down to level 7 for 9 hours. No pain afterwards.

Comment from: lilgirlblue, 45-54 Female (Patient) Published: April 17

I have sarcoidosis of the lung as of 2014. I was on steroids but it did help at all and now I have all kinds of pain, something new every month, and all my pain is always on the left side of my body. I coughed for about six month before my family doctor referred me to a lung specialist after a CT scan showed a mass on my lung.

Comment from: JennyB, 45-54 Female (Patient) Published: September 08

I received a clinical diagnosis of sarcoidosis the same day I was told I had breast cancer. During chemotherapy problems with white blood cell count and infections every round were probably due to sarcoidosis. Now one year later I have developed a dry cough and shortness of breath, and also very painful upper back spasms. I already have fatigue. I don't cough at all when I am sleeping or not talking in a warm room.

Comment from: Shaydie, 35-44 Female (Patient) Published: July 07

I kept getting shooting, stabbing pains in my rib cage for months. A couple of times I almost wrecked my car, they hit me so hard, but usually I would be at my desk and I'd grip something and scream. They were very fleeting. I went to two emergency rooms and an urgent care and kept being told I had pleurisy. I knew it was something else. Finally, a pulmonologist by chance happened to walk by my x-ray and saw a nodule no one else had seen. I went in for video-assisted thoracoscopic surgery (VATS) and was diagnosed with sarcoidosis. I used to get out of breath from riding my bike or running up the stairs, but thought I must have been out of shape. My oxygen levels are always perfect, even though the scarring has destroyed about 30% of my lungs. After two years on prednisone, I went off and still get the shooting, stabbing pains on occasion, but not as bad as I did. In the meanwhile, I was also diagnosed with Sjogren's syndrome (another autoimmune disease) which causes me to have dry eyes and sore joints. I take Plaquenil for that.

Comment from: KMoore, 45-54 Female (Patient) Published: January 09

I have been to every kind of doctor there is. At first they thought I had lupus. Then recently I had an MRI of my brain and they found lesions. They thought it was multiple sclerosis. But both of those were ruled out. I just went to a rheumatologist because I have pain in almost all of my joints. I thought I had arthritis. But that was ruled out. But the doctor said that my ACE levels are high. But my chest x-rays were normal. He thinks that I may have sarcoidosis in my nervous system and wants me to have a biopsy of my nerves. I have night sweats, severe pain in my joints, numbness and tingling in my hands and legs and shortness of breath. I get bronchitis, sinusitis and pneumonia a lot, among other symptoms. But I am wondering if the lesions in my brain can be caused from Sarcoidosis.

Comment from: Glenn, 55-64 Male (Patient) Published: December 17

It was in 1992 when I first had the symptoms of sarcoidosis uveitis. I had a skin biopsy and the results came back as positive for sarcoidosis. I went for various tests to see if the disease was affecting elsewhere but it proved that it was only my eyes. I still have problems to this day with my eyes flaring up where I cannot face artificial light or sunlight for a few hours. I am on a high dose of steroids at the moment as I recently had a flare up which stopped me from seeing out of my right eye for a period of two to three weeks. I am also on Maxidex steroid eye drops to keep the inflammation under control. I am a fit 50 year old who goes to the gym every day. As I said the only issue I have is my eyes.

Comment from: Anita, 45-54 Female (Patient) Published: October 08

I was diagnosed for sarcoidosis some years back and I took some steroids. Of late I am unable to swallow food, feel breathless all the time, and fall prey to infections. I am unable to sit in air-conditioned place as it causes me cough and weakness.

Comment from: jennifertp3, 35-44 Female (Patient) Published: July 30

I began having raised area to my skin on my legs. My doctor didn't notice anything. I then began to lose weight due to being unable to swallow my food. I lost 80 lbs in less than 3 months. I was sluggish and tired all the time, couldn't concentrate, and slept all the time. I have not been able to work due to weakness and numbness all over. Again the doctor said I was depressed and I had a sinus infection. It was when I went to get my annual eye exam that my eye doctor noticed a difference in my eyes. When my eye sight became blurred, I went back and my optic nerves were swollen so much so that my eyes were bleeding. I had an MRI and the next day woke up with facial paralysis to my left side of my face. Less than 6 weeks later, I had a spinal tap done and the next day woke up and the right side of my face was paralyzed. I was just diagnosed with Sarcoidosis this weekend. I was going blind also. I am scared because I don't know what is going to happen next.

Comment from: Robert, 65-74 Male (Patient) Published: February 19

I have been diagnosed with sarcoidosis on the face only, 40 years ago. When I have a breakout, they inject me with prednisone in all the bumps around my eyes and mouth. If it's a real bad break out, I also get put on prednisone pills. This last breakout has not gone away like all the previous times so the doctor gave me a shot of cortisone in the buttock instead of orally. I still see the bumps and I fear this is not working. I really hate all this prednisone and cortisone.

Comment from: Hazel, 45-54 Female (Patient) Published: May 06

I have sarcoidosis now ten years. My symptoms are getting worse now. I have bouts of being sick and tired and not fit to get out of bed. My ACE levels have gone from 48 up to 58. My doctor is of no help. I ask for steroids to help me get out of bed. I have had 3 relapses in less than 3 months. It is happening every 3 weeks now.

Comment from: Louise, 19-24 Female (Patient) Published: May 30

My experience with sarcoidosis has been somewhat up and down. At the start I was really bad I couldn"t breathe right. I had pain in my lungs and was feeling tired all the time. Now I am feeling a bit better, still a little pain at the bottom of my lungs, no breathing problems. I"m just thankful I’m still alive having heard a lot of the stories on this this. I"m 22 and I got diagnosed a year ago.

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

I am a 63 year old female. In 2007 I had a traumatic back injury and developed pneumonia following the surgery. When I did not recover with antibiotics they did a chest x-ray and discovered the scar tissue. I was followed by several different specialists, but never received any treatment until I was referred to a pulmonary doctor by my family doctor! He began treatment 1 month ago! I have chronic obstructive lung disease, with nodules, my eyes are impacted, I have a CPAP machine for sleeping, and was started on prednisone and methotrexate 3 weeks ago finally! Sad there was no treatment for the sarcoidosis for 7 years!

Comment from: ms. tricia, 55-64 Female (Patient) Published: March 19

I was diagnosed with sarcoidosis at age 40, I am now 61. This is a chronic disease that periodically goes into remission. My eyes, lungs and skin were affected. The mystery behind this disease is the worst part I have to cope with; not knowing what triggers a flare-up, and I am diabetic from long term use of steroids to treat this disease.

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

I had sharp pains in my legs which is being treated with Lyrica which helps with nerve pain and achiness. My newest symptom of sarcoidosis is dry cracked feet. I do live in Minnesota which doesn"t help.

Comment from: lynn, 19-24 Female (Patient) Published: March 21

I stared having pain my 10th grade year of high school and I started losing weight like crazy. Within one week I lost 15 pounds. I was 16 at the time, it wasn’t till I was 18 when they finally told me what it was. I had shortness of breath (splinting) and stared to sleep all the time and get sick very easily. I was in and out of the hospital my 11th grade year. Finally I found a doctor who know what I had! The other doc. said I had to get surgery to see what it was but thankful I didn’t have to but they did say some time down the line I might have to.

Comment from: Stacey, 35-44 Female (Patient) Published: March 18

I was diagnosed with sarcoidosis in 2006. It took four months of me going back and forth to the doctor telling them something was wrong with me before they diagnosed it. My main symptoms were: weight loss, fever, night sweats, severe shortness of breath, swollen parotid glands, swollen eyes with blurred vision, granulomas that formed on my eye lids, general ill feeling all day, and a rash on my cheeks. Once it was finally diagnosed from a biopsy of a node from my chest cavity, the sarcoid had affected my lungs, eyes, joints, and heart. The valves in my heart were collapsing. I was on high dose prednisone for two years and Toprol XL. I have been symptom-free since 2008. I see a cardiologist and a pulmonologist on a regular basis, and they stated everything is healing well. My heart muscle is almost to normal size again. I was also told I had cancer in the beginning and was referred to an oncologist who sent me to the thoracic surgeon to do the biopsy. I am a single mother of three, that was the scariest time of my life.

Comment from: Sarcoidosis Dialama, 35-44 Male (Patient) Published: January 27

I was diagnosed with sarcoidosis accidently about 3 years back while going through my eye sight check up. Ophthalmologists observed some white fluid behind the retina membrane. Got checked up my SrACE immediately and it was 158. Chest X-ray showed some hillers in left side. Current CT scan and PFT still show lymphocytes and obstruction respectively. Have gone through 2 cycles of Pednisone and MTX, starting from 30 mg to 0 over a period of some 24 months.Going through a very vague state of disease now. Problems are observed while tests only. No apparent symptoms or problems. Some Dr are prescribing for recycle of heavy dose of steroids and other is advising for ceasing of all medication and go forward and wait and watch for symptoms.

Comment from: wefarm, 55-64 Female (Patient) Published: January 26

My sarcoidosis presents itself with reoccurring bronchitis, asthma, and sinus infections. I was diagnosed after an abnormal x-ray which lead my specialists to suspect lung cancer. I underwent a bronchoscopy during which time my caregiver took biopsies of any and all suspicious scars. I do have numerous scars in my lungs do to repeated pneumonia including MRSA pneumonia four years ago. It is VERY difficult for me to obtain information about this disease from my specialists. I have been given NO guidance as to how to adjust my lifestyle in order to improve my situation.

Comment from: emedicinehealth, 35-44 Female (Patient) Published: December 24

My brother is suffering from psoriasis from last 7 years and recently doctor said he is having another form of psoriasis also.

Comment from: Marc, 55-64 Female (Patient) Published: October 13

To get rid of gallstones I decided to try the liver and gallbladder cleansing.

Comment from: CC, 65-74 Female (Patient) Published: July 10

I was diagnosed with sarcoidosis 2004 with involvement of lungs and eyes. I had a prednisone regime followed by a year and a half of methotrexate. I thought I had stabilized. Now, I seem to be recovering from episodes of uncontrollable dry hacking cough in mornings and at any time of the day. However, recently, I was diagnosed with sarcoidosis skin lesions and one basal cell carcinoma. The biopsies and surgical removal of basal cell wouldn't heal. I ended up on super antibiotic ointment and it is working. Good luck to all.

Comment from: renee renee, 45-54 Female (Patient) Published: August 08

The symptoms that I experience was shortened of the breathe, fatigue and TIA's, I didn't know what was going on until I received the Big TIA's....

Comment from: carol, 55-64 Female (Patient) Published: July 18

i have just been diagnosed with sarcoidosis It took months to know exactly what it was. Symptoms included feeling tired, slow heart rate, pulvertations. Had so many tests. One day went in for broncoscopy because there were shadows on the lungs and swollen lymph glands. They didn't do the test but took me straight into hospital due to my heartrate which was 35bpm. Had a load of tests where they found i had 30% block heart. Had to have pacemaker and defibrillator in one. That was a few days ago ,going back to see the specialist who has informed me i will be put on prednisone i think positive but i worry about what the future holds ,work etc.

Comment from: Maxi, 55-64 Female (Patient) Published: July 17

I started have symptoms in 2007 I was 52 years old, it started with a dry cough, at first I was told I had TB as I am of an ethnic background (white father, black mother), living & working in China for many years, and my mother died at age 37 when I was only 6 of lung disease which was thought to have been TB, however now the doctors think she may have had Sarcoidosis too. I get dreadful night sweats, and Fatigue I also get ear infection and sinus infection all the time. It is an insidious disease with so little know about it I have decide to take matters into my own hands, I have stop taking the prednisone (with all its side effects), got myself on a vegan diet and excise routine, and although the Sarcoidosis is still spreading slowing through my lungs I have started to feel a lot better in myself. I also starting using a Turboforte Respiratory Device which has improved my lung capacity I have been able to start walking my dog again and enjoy life again for the first time in years

Comment from: Pep, 45-54 Male (Patient) Published: July 02

I have been diagnosed with Sarcoidosis since I was 30 years old. It started with a chest cold, then loss of eye sight...joint pain and later developed skin sarcoidosis. The skin sarcoidosis came after I got off of prednisone and I still today get the skin disease. I have been in remission for at least 20 years, however I still get the rashes (don't understand). I am blind in one eye and the major symptom in my diagnoses was my eyes (eye exam did it)!!

Comment from: Rafia, 25-34 Female (Patient) Published: July 02

i had symptoms like shortness of breath, swollen ankles, anemia, cough, tiredness, fatigue, insomnia, altered heart rate, dizziness, blurred vision, numbness in hands, memory loss, eye infection and loss of apetite. doctor advised me several lab tests including chest x-ray which shows hilar adenopathy. further ct scan showed enlarged lymph nodes. i was told that i might have cancer, tuberculosis or sarcoidosis. then i went through VATs biopsy. it reveals that i have sarcoidosis. then again doctor had my MRI brain, PFT test and many other blood tests. now i m taking corticosteroid and dont know for how long. Furthermore my Vitamin D level is too low. Here in Pakistan nobody knows about sarcoidosis so i feel like an alien when anybody ask about my illness.

Comment from: Marge, 45-54 Female (Patient) Published: June 13

I had a bad cough which turned out to be bronchitis in Feb. 2013. I was put on Zithromyicin Z-pack and suddenly lost my taste and smell. I used to take three medications for my allergies on a daily basis, but now my mouth,nose, and eyes are so dry I do not need them. I went to an ENT doctor and had a Ct. scan of the brain,MRI of the brain and all turned out negative. Then I decided to see a neurosurgeon who diagnosed me with neuro-saroidosis after getting blood work done. He sent me to a Pulmonologist and I had a chest x-ray with a breathing test done and all negative again. I am so tired of not finding out where this sarcoidosis is located in my body. Now I am told I will need a spinal tap done. My eyes are sensitive to light,and I also had an eye exam done recently but no sarcoidosis again.I do have trouble sleeping,night sweats,feeling tired, depressed, still no taste or smell, trouble concentrating ,dizziness, joint pain, eye problems, etc.I wish there was an answer for me because it has been 4 months now and I am still going to the doctor.

Comment from: RosiePosie, 65-74 Female (Patient) Published: May 30

I did not have any symptoms. I had an abnormal chest x-ray. (I have to have one per year because I take Humira, a TNF blocker for rheumatoid arthritis. I then had to have a CT scan, which showed extensive non-calcified hilar adenopathy. A blood test then showed I had sarcoidosis. I have to have a bronchoscopy done as soon as a pulmonologist can see me, and I am so scared of the procedure because I have severe problems with anesthesia. Also, I must use my voice the next day and fear injury to my vocal cords.

Comment from: DEBRA, 55-64 Female (Patient) Published: April 24

I’ve had sarcoidosis for about 10 years now and still have a feeling of fatigue. I have been experiencing some symptoms that are troubling. It’s like I am having an allergic reaction to things: my lips will swell, sometimes an eye, I have been getting hives, and I have a rash-like eruption on my left foot. Also, the tips of my fingers get hot, swollen and sore. I looked this one up and it is called Raynaud's syndrome or phenomenon. This is very troubling and bothersome. I’m also wondering if this is something else.

Comment from: kwolfe, 55-64 Female (Patient) Published: April 17

I was diagnosed with sarcoidosis last August when I was hospitalized with atrial fibrillation. I had received a double fracture to my leg and ankle and then a brown recluse spider bite on my non-fractured leg. The spider bite caused severe edema of my foot and leg and my fractured leg also developed edema. A chest CT scan showed five swollen lymph nodes and blood work showed a high level of antigens. Fluid pills did not work. I had lots of IV antibiotics and those were slow to work. I developed a rash all over my body. I finally used essential oils on my leg, and after five days the swelling began to subside. I had been having sarcoid symptoms for about 10 years before the diagnosis. I had pneumonia three times in one year and strep five times. I also had numerous sinus infections and severe leg cramps and bone pain. After three months of steroid treatments, I began to improve. Then I started experiencing severe weakness in my legs and arms and had to stop the steroids. I was put on nonsteroidal anti-inflammatory meds and kept having numbness in my arms, along with dizziness. I stopped those meds and now have continuous pain in my legs and back. I also get lots of headaches and have visual disturbances. I feel tired and sickly on a daily basis. I have difficulty concentrating and memory loss, depression, and general malaise.

Comment from: Cynthia, 55-64 Female (Patient) Published: March 29

I’ve had sarcoidosis for more than 20 years and am a caregiver for my mother. My symptoms include hair loss, lung and breathing problems, along with pain in my eyes and back. I hope I can continue with my life.

Comment from: mags, 55-64 Female (Patient) Published: March 13

I have been experiencing funny turns were I feel very unwell nausiated and have a taste in my mouth I also have dry eyes and mouth and keep developing very large red inflamed lumps on and around my nose when they finaly calm down they leave scarring. .

Comment from: minnie40, 35-44 Female (Patient) Published: March 08

I have had sarcoidosis for 5 years my doctor said I have a very hard case. I had thyroid cancer before the sarcoidosis. It started with very high fevers weight loss, night sweats and feeling very tired. I went through a battery of testing for every other disease out there. I finally went to a specialist and was told I have this disease.

Comment from: njguy, 45-54 Male (Patient) Published: February 19

I am a white male 53 years old, and I have had sarcoidosis since 1987. Like many people, I was diagnosed with lymphoma at first, then by a gamma scan and a biopsy it came to sarcoidosis. My symptoms started with night sweats and joint pain. I refused to take steroids when initially diagnosed and still never have, and I believe that has been a benefit. I still have symptoms such as out of breath easily and fatigue. I think most of the management of joint pain and other aches is handled best for me by working out at the gym. I started on a pretty intense regimen about six years ago. Since I don't have the lung capacity to run, I do uphill on treadmill for cardio, and for the last 3 years I have done lots of weight lifting with machines. The weight lifting makes me feel great all day long.

Comment from: TYB, 45-54 Female (Patient) Published: February 06

I am a 45 year old black woman and was diagnosed with sarcoidosis in 1994. I feel so blessed after hearing some of your experiences, it is very overwhelming. When I noticed several skin lesions my dermatologist did a biopsy. This was followed by a chest x-ray which confirmed my sarcoidosis. These lesions were in my hair, on my face, neck, legs, arms, stomach and buttocks. My doctor injected them with corticosteroid and I was on prednisone and methotrexate for several months. My skin is scarred and I have learned to accept that. Aside from having mininal pain in my knees at times, I workout 7 days a week, including running at least 2 miles. My overall health is great and I feel spectacular. I believe my sarcoid has been dormat for many years now and I pray that it stays that way. And I am doing everything I can to keep it that way.

Comment from: Slack, 45-54 Male (Patient) Published: January 14

I have had sarcoidosis for about 23 years and have had every test there is done, but now my skin has broke out with a bad rash.

Comment from: Hope, 25-34 Female (Caregiver) Published: January 07

My daughter was diagnosed at 14 with Pulmonary Sarcoidosis. She had been ill since early childhood with symptoms of Crohns disease but was not diagnosed until she was 12. It took a year for the Sarcoid in her lungs to be identified (by open lung biopsy) at a leading hospital (in England). She is now 33 and in stage IV of the disease. She has been on Humira for her Crohns as well as steroids for the Sarcoid (which I think tipped her into type I diabetes when she was 18). She is now on 24 hour oxygen therapy due to the severe lung fibrosis and has a feeding rack tube for overnight nutrition to boost her weight (as well as normal feeding during the day). She is amazingly courageous and incredibly strong willed. The Medical experts and treatment has concentrated on treating symptoms they really do not understand. I hope and pray further research will lead to better treatments and a more holistic and less closed book approach for all autoimmune disease including the ones that have ravaged my daughter. In the meantime I pray each day for a miracle (and maybe that is what my daughter is) and am now looking at natural nutritional and healing remedies that may assist her.

Comment from: Gary, 55-64 Male (Patient) Published: January 03

I have had sarcoidosis for 17 years and I am 63 years old. I am on 14 medications. I have had 3 biopsies of my lungs and my sarcoidosis is on both of my lungs. I have gone to the hospital for a discussion on lung transplants. In most cases it only last 3 to 5 years and it's been 4 years that I have been without it. I get tired easy and get shortness of breath. I use a breathing machine 4 times a day. I have good days and bad days. It takes me so long to do the things I use to do in half the time. I try to keep moving everyday.

Comment from: Nonaperry, 45-54 Female (Patient) Published: December 27

I was diagnosed with sarcoidosis after having a severe dry cough, shortness of breath and weight loss. My symptoms started on Father’s Day and lasted until Sept 30 when my doctor ordered an X-ray that revealed masses on my lungs, and confirmed it with a biopsy of the lungs. I was fine but I notice that I now have a lung sensitivity to smells, that cause me to have to take breathing treatments to stop coughing. The smells range from roses, perfumes, citronella to dust. I have since learned to cope with it. That was back in 2004. I am a black female, with no history of this disease in my family.

Comment from: carlajrick, 35-44 Female (Caregiver) Published: November 13

My husband was diagnosed with Sarcoidosis after he was admitted to the hospital from coughing up pure blood. They did a biopsy of his lungs and found it. He now has a chronic cough, severe fatigue, and he has trouble walking. He is on a low dose of prednisone. Since we do not have health insurance it has been very difficult.

Comment from: painfully unsure, 35-44 Female (Patient) Published: September 26

I experienced the rash on my legs, which was extremely painful. I couldn't stand clothing touching it, and had pins and needles feeling as well as aching joints, shortness of breath, swollen joints on my ankles, wrists and knees. My ankles were so swollen it affected my walking abilites for a few months.

Comment from: sarcoid-better, 45-54 Male (Patient) Published: September 12

I have had sarcoidosis for 25 years. I am a white male, and have had a long history of allergies and lung problems. My original problems were night sweats, and joint problems. I refused steroid treatment as I was told it would treat symptoms but not the cause, which I believe to be true. My first diagnosis was lymphoma, but a biopsy showed it was not cancer but sarcoidosis. I have had numerous medical issues over the years which I believe are related, shortness of breath, arthritis in many joints, weakness, etc. Six years ago due to joint pain and back pain I began a serious effort at the gym, including weight lifting. I now go only three times a week and I am in great shape. I have very little symptoms except shortness of breath. I can do long cardio with fast walk and incline, but running still makes me feel as though I cannot breathe.

Comment from: Tammy, 45-54 Female (Patient) Published: September 12

I have had Sarcoidosis for seven years and it went to my lungs. I have pulminary phibrosis. This disease has taken a lot from me and this last week I had my spleen removed, I'm thinking it was lymphoma. I am not so sure now. I am so tired of this disease and all that goes with it.

Comment from: Enthusios, 55-64 Male (Patient) Published: June 26

I am a 57 years old black male who was first diagnosed with sarcoidosis in 1995. It nearly killed me. I spent a month in the hospital until I finally found a specialist in Philadelphia who knew what she was doing. I had severe lung involvement and skin rash on my shins. I was treated with high doses of Prednisone and Prilosec for my stomach. It took a full year to resolve. I had another episode in 2007. They added Imuran to the Prednisone. I recovered in about 5 months. I am now experiencing symptoms again and have an appointment with my Pulmonologist. I have no choice but to deal with this thing one day at a time. God Bless to all who suffer with this awful disease.

Comment from: Pray for a Cure, 55-64 Female (Patient) Published: May 30

I started having symptoms of sarcoidosis when I was 10 years old; persistent cough that was so bad I couldn't catch a breath. Doctors at that time would only prescribe cough syrup, which did not work. The cough would go away for a few years and then return with a vengeance throughout my school years. In my 40s I started having severe eye problems (iritis). I was tested for TB, Lyme disease and lots of other diseases that I can't remember the names of. In my early 50s, the severe cough came back and never went away. I would cough so hard I couldn't breathe. I also started having issues with my heart (arrhythmias). Sarcoidosis was diagnosed by mediastinal biopsy. It was in my lungs and lymph nodes. Now my skin and heart are involved and doctors are watching my nervous symptom, kidneys, and liver. I am now disabled due to sarcoidosis and am in Stage IV (last stage) of the disease. I was on prednisone for over 10 years and have been on methotrexate for the last year. Now my body is rejecting that medication and the cough is back. I see the sarcoidosis specialists at National Jewish Health and they really stay on top of everything concerning this disease. My doctor at NJH said we will probably have to try another medication as there are still a couple more to try. It's a dreadful disease and hope every day they find a cure.

Comment from: kj, 45-54 Female (Patient) Published: May 03

I had a raised, discolored bump on my shin then a year later another one in the same area. However, my dermatologist just kept treating with creams and didn't bother to tell me that the biopsy pointed to sarcoidosis so by the time it was finally diagnosed in 2008 (6 years later), I had lots of damage done to my lungs as well. The leg has gotten much worse and is totally disfigured. All my shin almost up to my knee. After being treated with prednisone, plaquenil and methotrexate for the last 4 years, my lungs are doing better, but not my skin, as I have spots on almost every body part now. I joined a study with Cleveland Clinic and have been getting injections of either Simponi or Stelara for seven months. Now I have developed neutrophilia and have an extremely high white blood cell count along with most things in my CBC being off. I now have an apartment with a hematologist at Cleveland Clinic to try to figure out why. We aren't sure if one of the drugs has caused it or not. We are hoping it doesn't turn into leukemia which would be the next step. Wish me luck.

Comment from: carol, 55-64 Female (Patient) Published: September 21

I am in unbearable pain with sarcoidosis. I've had both eyes operated on, lung surgery to remove the lumps, heart surgery, bell's palsy twice (each time for a year), I can't exert myself or I go into a coughing spasm, I can't even laugh heartily as this also causes choking and coughing, I have nauseating migraines that won't go away, I have skin lesions, I had kidney failure, my bowels erupted, I have joint pain...The list goes on and on. I can't find a doctor to treat me. I actually planned suicide, but God pulled me up out of that death trap.

Comment from: Dee, 55-64 Female (Patient) Published: September 21

I had an active sarcoidosis 30 years ago. The first symptom I got was a skin bump but didn't do anything about it until I lost my eye sight and was surprised to learn they were related.

Comment from: Gary, 65-74 Male (Patient) Published: April 26

My symptoms were shortness of breath, night sweats, and fatigue. I was finally correctly diagnosed in the early 1990s. I also had lymphoma and this caused some confusion among the doctors. Lung X-rays and a biopsy confirmed the sarcoidosis. Several biopsies from a lump on my neck confirmed lymphoma. The ophthalmology and pulmonary doctors monitor my lungs and eyes.

Comment from: Richard, 55-64 Male (Patient) Published: March 29

I was officially diagnosed in September 2010 as having Sarcoid(osis). This was suspected back in May 2010 when I was diagnosed with Uveitis in both eyes. This was treated with topical steroid eye drops. However, my blood results in August showed that the Sarcoidosis had spread to my kidneys and my kidney function was down to 13%. I had an emergency kidney biopsy which confirmed the presence of granulomas in both kidneys. I was started on 60mg of Prednisone immediately. The Prednisone had some unfortunate side effects such as muscle cramps in arms and legs and some headaches. I am now down to 5mg Prednisolone per day (after 6 months) and my kidney function has improved to 43%.

Comment from: teatimewithlorry, 65-74 Female (Patient) Published: March 02

I was diagnosed with sarcoidosis eight years ago, but only in the last year and half ago did I start experiencing the difficulty breathing, chest pain and constant burping upon slight exertion. I burp more than 100 times a day.

Comment from: m. Rackstraw, 35-44 Female (Patient) Published: August 17

I have recently been diagnosed with Sarcoidosis. I am 40 years old, I have been suffering from weight loss, shortness of breath, chronic cough, and pain on the right side of my body (where my right lung is). I have been in so much pain for several months now, since December 2012.

Comment from: fighter, 45-54 Female (Patient) Published: July 12

I found out in 2004 when I could not walk 10 steps without being tired that I had sarcoidosis. While driving I had to stop when I found myself having to pull over and sleep for a few minutes. Even now I cannot overdue too much and cannot enjoy the sun without breaking out in severe rash on hands and arms. My chest is always tight and I find myself needing a fan for more air daily and to try to avoid stress, for this can drain energy even more in weakness. Yet through it all, I won’t give up and let it beat me.

Comment from: Irima, 35-44 Male (Caregiver) Published: June 26

Hello I am from Romania, a country where sarcoidosis is very rare, but still it exists. 12 years ago my husband was diagnosed with this disease. At first doctors said it was cancer and he has 6 months left to live. After more investigations they finally said it was sarcoidosis (lungs were affected) and told him to take prednisone. He consulted a naturist doctor, and followed a naturist treatment, and he got well. He was 100 percent cured. Now after 12 years it seems the disease reappeared, he still needs to have some tests.

Comment from: 25-34 Male (Patient) Published: May 03

Looking back, I began experiencing symptoms of sarcoidosis in high school. My symptoms were shortness of breath and I never seemed to get enough sleep. I played sports all through high school and was in excellent physical condition. It wasn't until I was 24 when I was officially diagnosed with sarcoidosis. I went into the hospital with pneumonia-like symptoms. X-rays showed major damage to my lungs. Now it’s six years later and I am still managing the illness.

Comment from: rasham, 45-54 Female (Patient) Published: October 25

Initially low grade fever and tiredness till the time fever stayed. Investigations done to find the cause of fever, x-ray, ct scan and a bronchoscopy later, sarcoidosis confirmed. Right now taking a course of anti-inflammatory drugs but will avoid steroids at any cost because my doctor says it will sure shot trigger kochs(tb). So living with fever at times and swollen ankles, no other symptoms as such.

Comment from: flowerquilt, 45-54 Female (Patient) Published: July 07

Dry cough for several months. Then was diagnosed with pneumonia. Finally saw my regular family doctor who ordered chest x-ray.

Comment from: fran, 65-74 Female (Patient) Published: June 15

Symptoms for a decade were considered to be lupus like, until a granuloma appeared that was diagnosed through biopsy and then further tests. Sarcoidosis diagnosis was made on the basis of enlarged lymphatic nodes around the lungs, very elevated angiotensin levels, inflammatory joint reactions, fatigue and cough. Initially treated with steroids, then stopped due to problems with type two diabetes. Then on to imuran for a year, but developed melanoma, resulting in surgery and bridge graft plus lymph nodes removed and biopsied. I decided I had enough of risky drugs and tried a holistic approach to controlling or reducing inflammation. Went milk free, a challenge, and this seemed to result in more energy for me. I have also been tested and found to have mild pulmonary hypertension which at the present time my doc does not make much of it. I am a tough old gal of 70 and I have a large dog so i exercise daily with a one hour walk and three swims a week. Having said that, I am fed up with the myriad of things that do not feel right all the time. I am interested to know the latest info on Vitamin D25 and 125 related to sarcoidosis.

Comment from: redrose, 75 or over Female (Patient) Published: June 02

I was diagnosed with lung cancer of my right lung in 2009. I had lung cancer in my left lung in 2006. So every year they perform a PET scan to check my left lung. The results of the PET scan showed I had cancer in my right lung. However, there was no biopsy done. I had surgery on May 3, 2010. The doctor told me it was benign and it was a bacteria (which later I found out was granuloma). I couldn't understand why there was no biopsy done. Later, when I talked to the surgeon I asked "if you had known before the surgery, it was a bacteria, couldn't it have been treated with antibiotics?" He said "yes". I really was upset as I went through hell with that surgery and it took me almost a year to gain my strength and I lost 8 lbs and still weigh only 110.

Comment from: Washred, 25-34 Male (Patient) Published: May 27

The first symptom I discovered before being diagnosed with sarcoidosis was that I woke up with blurred vision in my left eye and by the end of the day it turned red.

Comment from: Aliceanne, 55-64 Female (Patient) Published: May 24

I was diagnosis in 1950 at the age of 4 years old. My mother had survived TB, by having radical surgery, a lung removed. The doctors back then thought the TB may have brought on the Sarcoidosis. Also, Streptococci was considered. I had nodules on my lower legs. Again, in 1972 I was diagnosis with Sarcoidosis and admitted to the University Hospital of San Diego. I had wisdom teeth pulled while unknowingly had strep throat. Bed rest was prescribed. I have been in remission ever since, living a normal healthy life. My current doctor believes that Sarcoidosis is basically a youthful disease.

Comment from: Wendy, 45-54 Female (Patient) Published: May 16

I was diagnosed with Sarc of the lung in January this year. I had extreme fatigue, shortness of breath and a LOT of swelling and pain of both knees and both ankles. It was sudden and very bewildering. I also had pain over my chest and in my back; doc sent me to have X-rays done and then the hospital admitted me, thinking I had a blood clot. After a bronchoscopy they discovered the Sarcoid. I'm on Prednisone which works well except for the loss and growth of hair in the wrong places. I am a 47 year old white woman and have always had good health except for sinus and hayfever and had to work in a VERY smoky office for many years back in the 1980's. I still get very tired at times, probably because they Prednisone has been reduced substantially.

Comment from: pat, 45-54 Female (Patient) Published: May 13

I am a 54 year old woman. I do not smoke, drink and am in reasonably good health. No meds whatsoever. Over the past month I have had a persistent cough with bouts of vertigo. I went to the doctor and they put me on a 5 day antibiotic. I am on the 4th day. Vertigo has subsided but cough is still here. Not quite as often but enough.

Comment from: cougher, 55-64 Male (Patient) Published: May 10

I am a 58 year old white male. I have been in great health my whole life. I never smoked, I exercise regularly and eat healthy. About three months ago I started coughing .I thought I was catching a cold and didn’t pay much attention to it until it didn’t go away. Then it developed into a chronic cough that just kept getting worse and worse. After a trip to my regular physician he sent me to a pulmonary physician. After x-rays, ekg's, chest scans, a bronchoscopy, blood tests, my Doctor said I had sarcoidosis. I was put on prednisone which seemed to help, but when I stopped, the coughing resumed. I am still going through the treatment phase but every day brings to wonder what is going to happen next.

Comment from: Munno, 55-64 Female (Caregiver) Published: May 10

My wife had swallowing near the chin right side. She was operated and removed the lymph, tested clinically and found Sarcoidosis, Mantoux test was positive, X-ray shows spot on both lungs. Doctor advised Prednisone 20mg daily.

Comment from: mccoy1130, 55-64 Female (Patient) Published: May 03

I was diagnosed with Sarcoidosis in 1980 when it was still considered a rare disease. My symptoms started with a lump and bruised area on my right ankle (I thought I had hit my ankle on the passenger side car door) but rapidly progressed the point that I was partially bedridden for about six weeks. It took doctors about 9 months to finally diagnose me after waffling between lymphoma and sardoidosis. I was treated with a high dosage of prednisone but when I got pregnant I was taken off (gradually). I have been in remission from sarcoid for about 15 years, but have since developed diabetes and am on a lot of medications for that.

Comment from: 45-54 Female (Caregiver) Published: March 10

I was diagnosed with sarcoidosis of the lung in 2004. I presented to the ER with chest pain. My CXR showed a nodule in my right lung. Because of my family history my family doctor ordered a CT Scan of the chest as a follow up, this showed not only the nodule in the right lung but also one in the left lung and several lymph nodes were edematous. I had a bronchoscopy, which they were unable to get biopsies from the nodules, but the bronchial washings came back + for MRSA. I was then sent to see a pulmonologist who made the diagnosis. I have been symptom free since and have not required any treatment.

Comment from: cdbadboysgirl, 35-44 Female (Patient) Published: February 24

I was diagnosed in 2007 after a bout of not being able to breath and feeling very fatigue. I had an x-ray, CAT scan and a PET scan before they did a lung biopsy that found the sarcoidosis. Since then I have still been fatigued and I have been experiencing new things such as hip pain and pain in my muscle alone with pain the lymph area under my right arm. People don't understand when you tell them that you hurt all over I found myself just not sharing with people when I don’t feel good and just acting happy and keep myself as busy as I can.

Comment from: ruth4686, 55-64 Female (Patient) Published: February 24

I have had sarcadosis for 15 years, until 6 months ago it has not been a problem, then I started with my ear lobes itching, then I had what appeared to be poison ivy on my forearm, then several other areas developed, shortly after. I developed eye pain in my right side, that cleared and went to the other eye, finally got the right diagnosis, but know I am having pain and swelling in my knee that I had replaced 5 years ago, either I have damaged the knee or I am concerned I could have sarcoidosis in it.

Comment from: Pam Logan, 55-64 Female (Patient) Published: February 24

I am a 55 year old black female, I have been rapidly losing weight since December 2010 and it is now February, 2011 and I have lost 25 pounds. I have a problem breathing, heart palpitations, and fatigue. I have had every test you can think of and no one can tell me what is happening to me. Not my medical doctor or lung doctor I don’t feel I can make it too much longer like this.

Comment from: hopeful, 45-54 Female (Patient) Published: February 09

Have recently been diagnosed with sarcoidosis. I have difficulty taking a deep breath, worse when I lay down or climb stairs. Have had difficulty swallowing for about 6 weeks, some reflux. Itching and bumps on my shins. Fatigue...when I wake up after sleeping 10 hours, I could sleep another 10. Blurred vision. Joint pain, especially hips, shoulders, knees, ankles...most recently toes.

Comment from: Judy, 65-74 Female (Patient) Published: February 07

I was losing weight without trying and also had a skin rash. My doctor sent me to a specialist for testing & the result was sarcoidosis. I was thinking I had cancer so this was a relief.

Comment from: spclmthruv3, 35-44 Female (Caregiver) Published: January 31

I am 35 year old female that has experienced sarcoidosis in the last few years: multiple skin rashes raised bumps (possible adverse reaction to something chemically based. Sometimes often enhanced by the sun. I also have a slight cough, and the constant need to clear my throat. Fatigue is an absolute. I wake up saturated in sweat.

Comment from: Charmaine, 35-44 Female (Patient) Published: March 14

I am a 38 year old female who has had sarcoidosis since 1997. It affects my lungs, the skin inside my nose, and my throat. I have really bad migraines, and sleep apnea. I get Remicade infusions to help me. Maybe we should all start a group to try and find a cure and to help each other.

Comment from: Ramesh Kumar, 45-54 Male (Patient) Published: March 14

My sarcoidosis symptoms are; cough, feeling very poorly, skin inflammation, and breathing problems. The main problem is that it’s been six years of having the disease, and I had treatment the first two years, then got rid of the disease. One year later it had gotten the same signs and treatment and had it for another two years. I think it will never end.

Comment from: Denise, 35-44 Female Published: January 27

Extreme tiredness, red lumps on shins, out of breath, swollen glands in neck.