Can sarcoidosis cause death kill or be fatal

Can sarcoidosis kill you
Can sarcoidosis be fatal
Can sarcoidosis cause death
Can you die from sarcoidosis
How long can you live with sarcoidosis

In some sufferers sarcoidosis can progress to pulmonary fibrosis and death. About half of sufferers get well without treatment or with treatment recovery is usually within 12–36 months, most certainly within five years. Some cases stay present for several decades. The disease can become chronic or remit spontaneously, with worsening and remissions in cycles.

Most sarcoidosis sufferers can live a relatively normal life; those with an immunosuppressed system must play safe as possible to avoid infections while the steroid treatment is carried out. If sarcoidosis continues to becoming severe and chronic then life can become complicated though this is usually less then 10%. Continued research and studies are carried out at University College London.

My song titled ‘Sarcoid’ it is for all of us involved with this condition.

114 responses to “Can sarcoidosis cause death kill or be fatal

  1. Hello I am sorry for taking so long on here . I had a hard couple of months .George P thank you for answering my dentist says it cause by medicine methotrexate and from throwing up so much. I used to be on predinsone now I can not it’s my stomache for a long time I had to go thru upper gi th Dr says the medicine is hurting me so I had to stop. One of the person on here talk about not going to make it to 50 I said the exact thing to my father before he past .I am still here ..has anyone experience severe severe pain in the legs and arm plus you could barley moved cause it hurt to walk. is that part of it meaning is it getting worse?Mary

  2. YES IT CAN. I was diagnosed with Sarcoidosis about 3 years ago. I had the usual sweats, weight loss and general feeling of illness that is usual with this disease, but then it seemed to be clearing up and my symptoms seemed to subside.
    However two and a half months ago I was rushed to hospital with a heart problem that was diagnosed as Cardiac Sarcoidosis and a pacemaker was fitted. I was hoping that the pacemaker would stabilise things, but just three weeks ago I suffered a very close call with a full cardiac arrest. I had 16 mins CPR from my wife before the Air Ambulance arrived, then 7 defibrillation shocks, a helicopter ride into intensive care to be put on life support. I came round the next day with some minor brain damage and a moderately damaged heart. The hospital removed the pacemaker and replaced it with a ICD (internal cardioverter defibrillator) and put me on a cocktail of drugs including very high dose steroids.
    This disease has suddenly cost me my career, my heath, my fitness, my driving licence (DVLA automatically revoke if ICD is fitted), both my hobbies of diving instructor and motorcyclist, my house as now we will have to downsize.
    So yes it can cause death.
    For my part I will now have to cease work, maybe get a puppy and maybe try to learn the guitar that I’ve owned for the last ten years and only managed to learn a few chords. Sarcoid can be suddenly life changing, but onwards and upwards.

  3. Hello My name is Mary,
    I suffer from Sarcodosis and also Hypercalcumia for the last 9 yrs every time I turn around there something going on like losing my hearing 7 months ago due to the sarcodosis it made matters worse because I am hard of hearing I had to relearn everything like my family and friends voice . I also have lypmynode in lungs , brain including neck , rash on the legs . hard on the nerves and bone too. I take so many medicine I was ready to give up but I said to myself do not give up think postive and smile every day at work even when you are in pain..I am going some hard time on the teeth I wondering if anyone have the same problem with teeth area where it would break put on crown then next teeth same problem I always brush my teeth every day three times a day still a problem. Could anyone please give me a suggestion how to safe my teeth I am so embaressed by it. Thank you

    • hi Mary, george p here im so sorry about your teeth ,are you on prednisone also and did dentist or your primary dr tell you that you would have this problem?my sarcoidosis is only in the lungs and i take a bone supplement per my dr just wondering whyit is afecting you orally- george p

      • My son died from complications of sarcoidosis of the lung.He was diagnoised in 2005.He was on 24/7 oxgen.He had a leigon,fungus.and pnumonia.The doctor said he should not have died3

    • i also have an underactive thyroid which i take synthroid for and the prednisone wreaks havok on everything it increases the pressure in my eyes which i must take 2 diff eye drops then it raises the colesterole which i take lipitor for then also i have steroid induced diabetes which i take 850mg 3 times daily -it is such a dibilitating disease and i do so pray for you all that have it in one way or another -believe in jesus with all your heart and pray

    • Hi,

      I’ve been reading these stories and my heart goes out to all who suffer. I, like Mary, suffer Sarcodosis and hypercalcimia due to parathyroid disease. Most people have a single adenoma, but I have multiple, all four glands involved. It’s a difficult disease, very misunderstood because it leads to so many other painful ailments. Yes, my teeth are also involved. One day in the shower, one tooth felt loose, I pushed my tongue against it, and it broke right off. This is due to excessive calcium in the blood. I suffer calcified kidney stones, fatigue, celiac disease, and all the pain that comes from high blood calcium. I too feel embarrassed by my teeth, but learned through several dental experts, there is nothing we can do. The high calcium calcifies the roots of our teeth and inevitably they don’t receive the nourishment. I’ve been able to embrace the things I can’t change, and try everyday to live with the great amount of joy I have in my life. I try not to define myself by ” I feel miserable” but rather, ” a great day, or a difficult day” Dental work is extremely expensive and I can’t afford to have my teeth fixed right now. My life wish would be to be able to smile again, wide smile!! But for now, I laugh and smile with my hand covering my mouth, and enjoy the moment! Hang in there everyone!


    • Lynne Cupples

      My sister is suffering from sarcoidosis and hypercalimia. She keeps going into the hospital due to dehydration and her calcium going up. This time she was in the ICU because her calcium was at 17.4. Where she is doesn’t seem to know what to do except to put fluids into her. Her hands have swollen and are in pain due to the damage from this episode. She also had diabetes. We are beside ourselves on what to do. She lives in Northern Maine with no real Drs. I have her coming to Boston but I’m hoping it’s not to late. She has been suffering with this for 3 years.

  4. Beverley Edwards

    Hello every one, I’ve been reading all of your stories, you are all amazing I do wish you all the very best, I know it isn’t easy and you all stay so positive I admire you all.
    My husband has had Sarcoidosis for four years he takes chemo tablets twice a week and steroids, he gets so tired but he doesn’t let it get the better of him, yesterday he went for his check up involving and x-ray and a talk to the Doctor, he had been optimistic however his Lungs were cloudy and he had lost 25% of his breathing. What I have told him to do is some breathing exercises to really open up his airways, surely any thing is worth a try. God bless you all and don’t get despondent.

  5. hi. patti from feb 6 yes all sounds familiar i break out in sweats if im just reading or watching a movie and at work im a custodian at a vocational high school and i have to clean awhole bakery takes me almost 4 hours also yes i am always fatigued plus i also have hypothyoidism an underactive thyroid i am not heavy though have very fast metabolism i wish your husband well its a long road i have been diagnosed with sarc since jan 2010 doesnt seem to be letting up and my heart goes out to everyone tht has it evryday i feel like i have very bad indigestion and that someone is squizing the sides of my chest together sssoooo debilitating

  6. Hello All,
    I was diagnosed with sarcoidosis a few years back. As of now I am not on any medication. I get checked every 6 months and since I was diagnosed my chest X-rays and blood work come back normal. I can feel the disease in my lungs as it hurts at times and goes away only sometimes. I am 46 years old and not sure if I will make 50 and that may be negative part of this disease as we know very litttle. My joints hurt and have a hard time moving at times. Praying for all of you that suffer from sarcoidosis or any disease.

    • hey joe gorge p here you must hang on im 56 and have had this since jan2010 got to take it slow breathe deep as you can i got myself a nebulizer and use it daily at least it gives me some reprieve for a little while also i take prednisone when i was diagnosed they did a vats a video assisted thoracsic surgery they driiled 4 holes and took a lung sample to rule out cancer my dr told me sarc has the same symptoms starting out plus im a custodian at a vocational high school and have to clean awhole bakery which takes 4 hours i feel for everyone that has this – god bless

    • Do they have a cure for this at all,

  7. Hi, my name is Gloria. I am 47. I have been on disability since 2010. I have many medical issues. Just a few are Parkinson’s, Rheumatoid Arthritis, Trigeminal neuralgia, Thyroid (Graves disease in past) I have had Bells Palsy at least 7 times (hospital. 5 days minimum) two kinds of bells Palsy; one with pain and one without). Lucky me I had with pain. Peripheral neuropathy, Degenerative Disc disease, and Osteoarthritis. This is not an exhaustive list but you get the idea. A lot. Well, in December 2015 I noticed I started having double vision and extreme blurriness that would last for a few minutes here and there. I also noticed as the months passed that I started falling. I assumed this was the Parkinson’s. I said something casually to my mom and she said for me call the Dr. I was having issues at this point due to moving and insurance changing. I told her I would though. Well I started falling even more, double vision/blurriness even more. I was finally able to get into my neurologist I believe it was in June. He scheduled a 48 hr EEG to check for seizure activity. Told me to go have blood work done and a MRI of the brain was scheduled I believe for 7-23-16. I cannot remember date anymore. On 7-14-16 I woke up tried to walk to restroom, which is like 10 ft from bed. I literally took a step and went sideways. It was I had been feeling when I was falling but 100x. I could hardly get myself to the bathroom. When I tried to get back to the bed I was like, whoa, something is wrong. I got to the bed and literally any moment, even like just breathing made me soo nauseated I started dry heaving compulsively. It wouldn’t stop. I had to get ready for work. This was 6:15. I thought I will try to sit still and see if I can try to get dressed. Nope, every move literally caused me to violently dry heaves. I was so sick I didn’t realize how much time had passed. When I looked at phone, it 7:00. I was like I am not going to be able to go to work like this. I realized something was wrong. Very wrong. I called my best friend/very next door neighbor. I asked her if she could take me to the ER. After we hung up I realized door was locked and she didn’t have the new key for the new lock. I had to somehow unlock the door. I stood up and instantly started falling to the side. I grabbed the wall, spinning and spinning the whole time and had absolutely no balance. Tried to hold onto the wall into living room. I had to let go to go across living room. I instantly fell hard to the left and landed on coffee table. . Things went flying, even a cup of mountain dew, obviously I didn’t care. Lol I tried to get up and almost was up all the the way and down I went. I have bad knees. So I like reached over, unlocked the door and had to crawl holding a bucket, dry heaving the whole time , to the closest chair. I had been able to get my bra on and socks and pants, not sure how looking back, but did. I sat their just constantly being sick waiting on my friend. She got there a few minutes later and was like omg. I tried, though heaving, and she said she was calling 911. There was no way I could make it to her car. So, trying to shorten this up sorry. I don’t know how to tell things in a brief description. Ambulance came. Took two EMTs to get me to the cart right outside. I have a very small house. I literally couldn’t stand for them. It was crazy.

    I got to the hospital. Blah blah blah. Dr initially came in, tapped my arm and said it’s just probably a virus and we’ll get you home in a couple hours. I just kept dry heaving. I couldn’t roll over in the bed without feeling like I was being thrown to the floor in wave of dizziness. Well unaware or how much time had passed I was being taken down for an MRI of the brain. Well Dr said I had had a stroke. And there was something else in MRI, just not sure what. I was in 9 days. They did a spinal tap and said that I had to see a neuroimmunologist at IU Med Center in Indianapolis. Mom come from down home to take care of me for I couldn’t be left alone. Saw Dr in Indy he confirmed (my Dr in hospital and my D suspected the neurosarcardosis) or diagnosed Neurosarcardosis or Sarcoidosis of the Brain. Rare. Great. So I had a temp job, after in home Therapy, and while I was in out-patient therapy, went back to temp job. Initially they put me on IV-infusions of Prednisone. Then switched me to pill Prednisone high dose. I was in hospital end of October thinking another stroke ( because my neurologist had told me to go with certain symptoms), They did another spinal tap. When I followed up with Dr. He said Prednisone wasn’t working. He said the results in the spinal tap had shown the Prednisone wasn’t working. He put me on Acthar shots. They seemed to be helping with balance a little and eyes a teensy. Well because of insurance confusion (5 shot vial cost 33,000$) luckily insurance covered it) I had to take shot every other day, 3 vials a month.

    So, the confusion with insurance caused me to have a delay of the shots. So on the 12-30-16 at 10:30. After being sick four times at work. More wibbly wobbly than normal. My eyes were not coming and going with their issue like normal, it was solid. At 10:30 my speech started slurring some, not a lot a but it slowed way down. I was like, wow, something is wrong. A couple of people (on my last day) temporary job wanted to take me to ER but I said no. I wanted to finish at 12. I finally decided to go, I called my friend. Asked her to pick me up and take me. She did. They said TIA which was not a stroke because it resolves itself. That night in the hospital st 3am I had acute stroke. They even had to code stroke me?

    So this get me to today. Just started having the evaluations for ot, pt and st. Then will go to out-patient therapy. Dr wants to hold off on shots till we get it in some sort of remission. I cannot hardly move around without sever nausea, ultimately getting very sick. He wants to try a I VIg and Plasmapheresis.

    Soo. After all that. Again I am so sorry it’s so long. Is there anyone else with neurosarcardosis or sarcoidosis of the brain???? If not since it’s rare, does anyone know anything about it??? Lifetime expectancy??? I know as long as it it is not controlled that I could have another stroke. Considering i had 3 strokes and TIA in about 6 months. Any information would be so greatly appreciative. Thank you so much for your time.

    • Tracey Newberry

      Hi Gloria,my name is Tracey. I have been seeing a neurologist for around 3 and a half years now,but have had a lot of symptoms going back years,a lot of which I blew off due to stress or some other thing.
      The two symptoms which really made me go to my local Dr. Were pins and needles with whole right side numbness and the lovely Trigeminal Neuralgia!! I take 3600 mg of Gabapentin (Neurontin) 3times a day,also Lamotragine 125 mg I’ve had MRI’S which just keep showing 3 non specific lesions. They were looking for MS. I had a lumber puncture which was negative. Numerous blood tests,the only one which was different was raised ACE pointing to Sarcoidosis. Test repeated,but it was normal,so they did’nt do a chest X-Ray.
      I suffer quite badly from acid reflux and have now discovered that when I exercise some time afterwards the muscles round my ribs go into spasms,pain will start under my shoulder blades,then chest,squeezing tight and causes the acid reflux pain through the middle of my chest,stabbing right through my back. Mad pain,has me rolling on floor,it comes in waves of gripping pain. This can stay around for 3 days and nights.
      There are lots of other things going on,crushing pain in my hands and feet. Feels like my heels are being crushed in a vice. Worst by far are the chest pain and TN. Nobody gets it,why I wear a woolly hat all the time,indoors and even on some summer days,because the slightest breeze sets it off.
      Anyway,fast forward,I saw my neurologist in the 1st of March around 3 weeks ago,he went through all my notes again and asked me do I take any other meds for anything else? I said Asthma and I had been on steroids before Christmas. So now at last he sent me for a chest X-Ray,with Sarcoidosis on the form with a question mark beside it. I don’t know the results yet. He also done a pin prick test on my feet and thinks I have peripheral neuropathy because of pins and needles and numbness. I asked him if sarcoidosis would cause Trigeminal Neuralgia? He said it would if it was Neurosarcoidosis. Of course I have Dr.Googled it and it does’nt sound great at all.
      So now I wait again! All the while dealing with all these symptoms.
      I am a barber so all the standing and constantly working with my arms in a raised position is very difficult. I have been forced to cut my hours down to 2 days a week,but I quite often get asked to cover holidays.I’m sorry to read about all you are going through yourself,must be really hard and exhausting for you. My prayers go to you and all those here who suffering from this illness.

  8. its come to the point were i now use fare to much medication and quite a lot of pain killers, i am 56 and have become quite depressed about my disease ,it seems like docters have given up on me , i dont blame them its quite a complicated disease

    • please dont ever give up tony and watch becoming addicted to painkillers we are going thru hell right now with our addict daughter – yes some dr’s seem unsympathetic but they dont have sarc nobody can tell you how you feel xept you im56 also had this since 2010 they say its stabilized in lungs but i havnt much energy -hang in there tony-god bless

  9. sarcoidosis is making a mess out of me , my skin is a mess my bones , feel weak walking distances ,
    i am 56 and don’t know how to tackle it any more , i get fevers i can not
    i am having problems coping and i am not sure if it has started killing me
    i have stress and panic attacks , i am loosing my appetite , i dont knoe what to do any more
    and its terrible when there is no one to talk to about it , doctors only treat me with pain killers prednisolone antibiotics , thinking every night for hours before sleeping has become like torture
    new symptoms have develped , people think its contagious and dont want me around , i dont blame them my skin does look real bad , is there any one out there that could help me maybe they might know of some remedies b

    • Heather Oates

      Hi, I have Sarcoidosis and now find walking very hard. My weight has shot up. My eye s have needed operations, my skin is a mess and my Kidney is involved. Scans show changes in most of my organs. I get panic attacks. Try alternative medicine, alongside the Hospitals care. Immune calm works very well for my lungs. A happy mental outlook will help. Sarcoidosis is a pain, a real pain but it does not kill many people. If you think positive you find physically you can cope. Try hypnosis. try everything until you find what suits you. One day I decided to just get on with living and to see my problems as a pest but not a source of panic and now I am enjoying life much more, I can not walk much but I have a scooter . Good luck. I am sure you will be fine. Just cope with the hand you have being given and remember you are not alone.

      • April Peters

        Hi Heather,
        Been properly diagnosed since August 2016. Had a cough since 2014, affected my skin, eyes and joints. And my teeth too. Its active in my lungs right now. Been very sore since bronchoscopy a couple of months ago. My feet are very painful. Been on very low dose of Prednisolone until recently. The granulomas have increased since June 2016 on the low dose.Now on 30mgs a day.I hate the weight increase. Cant sleep and suffer constant palpitations. Suffer with debilitating heat attacks. Hate feeling ‘dirty inside’ from drugs to combat Prednisolone.Fed up of feeling rubbish. I look in the mirror and think to myself, who is that looking back at me? I dont recognise that face as mine.
        I walk at much as possible, over 20k of steps per day. Try to limit calorific intake. Trying to hold down my job and living with ‘the lodger inside my body ‘ and keeping my business face on isn’t easy.
        I am trying to stay positive but do wonder will the lodger take over and kill me in the end. Or will the lodger move out eventually?
        Wishing everyone good health and relief from their symptoms.

      • hi heather george p here you are absolutely correct the mental part is so very important or daughter is an active addict 18th rehab already i am in recovery myself 13 yrs now from alcohol and if my outlook wasnt important i wldnt be there for my wife thru this who has diabetes and high blood pressure thanks for understanding -bless you

  10. hi everyone some days are better than others but this sarc is very debilitating and sometimes im not doing anything and i will think of a bad thought and it flares up- does anyone experience this also thank you if you can respond

    • Hello George P,
      You are the first one I’ve heard say those words, “bad thought and it flares up”..
      My hubby has not been diagnosed yet, but has all the symptoms and will have a PET scan and a Bronco scope the end of this week. He thinks, as do I, that his coughing fits come on when he is down (mentally). This has been happening for the last 6 years, but this time around he has lost almost 30 lbs and has been coughing bad for about 3 weeks now, plus low grade fevers and sweating; has no energy at all. Does this sound familiar?
      Thanks for listening.

  11. HELLO, I am 56 and was diagnosed with chronic sarcoidosis ONLY IN THE LIVER. I went into the hospital with pelvic pain (I felt like crap everywhere – but I have been battling chronic Epstein Barr – par for the course), upon a scan they found chronic mass in my liver. 2 weeks later they start to figure out sarcoidosis. It’s been since July, I feel joint and body pain. My liver constantly hurts, my eyes get grey and so does my skin. I have lost 50 pounds in less than a year, my skin is dry.

    After reading all of your post, honestly at this point I have decided NOT to take the nasty steroids since my immune system is already compromised with the Epstein Barr. In fact, thanks to landing in the hospital I have gone off all meds. I went over to New Mexico to see a natural doctor who is giving me a treatment to help, but I know there is no cure. Plus I am taking Rick Simpson Oil (Canabis) that has been known to reduce cancer tumors. But my last scan shows my liver is getting worse. Honestly, I don’t care. From what I see from your post, it’s not encouraging. Thank you.

  12. nancy gillingwater I have been so sick for so long,not sure life is going to get any easier or if I even want to keep fighting so hard? Praying for us all suffering with this horrible disease.I can’t even make money to pay my rent.

    • dont project take it one day at a time im a recovering alcoholic and i want you to have a better perspective of this some days i feel like im not gonna make it – please hang in there PRAY

  13. I have been dealing with this disease for over 16years now and was officially diagnosed with Pulmonary and Neurosarcoidosis 9 years ago. Mine is active chronic. I was high doses of Prednisone for over 8 years along with other meds. I was turned down by insurance for Remicade 7 years ago because it was off label. I was a Practicing Physician who loved his work. I started developing increased respiratory infections each year and had a lot of primary and secondary issues. I am in chronic pain 24/7 in my Right arm, legs, knees and get severe stabbing pains in my Torso constantly (as opposed to every once in a while years ago) I lost my gall bladder and have been hospitalized at least 6 times with life threatening Pneumonias (and everything that can come with it Atelectasis, Pleural effusion, pleurisy , sepsis etc) Last year I was in ICU for over 2 weeks and needed emergency surgery and had tubes in me for 5 days. I once went to bed at midnight feeling fine when I woke up at am gasping for breath by the time I got to the hospital I had double pneumonia, Atelectasis, pleural effusion and was septic. I had to retire on disability from a job I loved doing for 26 years.
    I am not complaining just stating facts. I know and have know a lot of people with this and other diseases that are far worse then I am. I have a great on line support group that have been with me the whole way (e-mail me for the web site) and a loving wife and children as well as other family members who have been there for me.
    Yes Virginia, Sarcoidosis can be deadly. Thank G-d not in most cases. We need more research, more medical early detection and public education. if anyone is suffering feel free to write, I don’t sleep more then 2-3 hours a night because of pain. so I have a lot of time. lol G-d bless anyone with this and any other disease that can affect your quality of life.

    • i dont understand when i go to the lung dr there are no posters or medical things on SARC that copd is bad but sometimes i cant even walk ten feet and the pain starts feels like a cobination of someone lighting a match in my chest and being waterlogged like when you take too much water in when swimming – uuuugggghhhhh does anyone have this problem ?

    • Pls send me the support group info. Thank you
      [email protected]

    • Hi Mitchell, could you please send me the name of your online support group? I have been dealing with sarc (both neuro and thoracic) for just over a year. Could use some support. Thanks, Kim

  14. I had kidney cancer last year had my left kidney removed and my adrenal gland , after that I was diagnosed with sarcoid in my lungs and around my heart now my joints hurt and I’m so tired my knees have gone and I’ve been referred to a surgeon I’m a carer for my daughter would I be entitled to pip I can’t carry on like this and I need help no one understands and there’s no help even when my daughter care coordinator referred me to my council’s care department they didn’t help with anything

      • I guess my 5 yrs are up I’ve been having more and more issues since diagnosed I only have it in my lungs at this point but seems as almost every time I get something as simple as the sniffles I end up at hospital, this most recent trip had acute bronchitis, respiratory infection and RSV. I’m on oxygen all the time and dare not forget to take with me also cost me my job. I can go days on end with not wanting to do anything but sleep I make myself get up (battle in it’s own) and where I land I end up back asleep. I’m considering filing for disability but from what I’ve read it’s probably not an option. I don’t take the prednisone due to the side effects plus could be off them and have to start back and up in a tail spin usually followed up another hospital visit. I’ve been in 4 times since September and for no shorter than a week. Just trying to hang in praying for all with this terrible disease and hopes for a cure.

      • stuart thank you for allowing me to repond to folks with sarc like me your the best

  15. hello you all… My name is andria and i am 28 years old. I do not suffer from having sarcoidosis, but i do how ever suffer from related diseases and have been since the age of 17.. I knew nothing of this disease untill a few days ago.. I am a solo carpenter and do in home care for a small group.. well my most memoriable patient is suffering from sarcoidosis.. i see what he has to go through on a daily basis and i completely understand how you all may feel due to certain misapps in my own fighting agenda. I am here with loving eyes and ears for whom ever may need it and i want to thank you all for sharing your struggles with the world to see,.. Due to your comments and complaints i now understand sarcoidosis alot better and i am now able to help maintain a more suitable environment for my patient.. i wish you all the best and you will all be in my heart,thoughts,and prayers

  16. I was diagnosed with Pulmonary Sarcs when I was pregnant and 28 years old. I was really ill and bedridden for about 2 years. I made a slight recovery but still suffered Doctors told me to wrap myself in cotton wool and do nothing just rest. I never did! I lived my life from day to day each day a different pain going to bed exhausted and taking 2 days to fully recover. 2 little girls and a home to run I had to get on with it. I am now 70 years old and my heart is failing me, I am coughing all the time, incontinent and have breathing problems, I am also going blind. I still won’t give up I have just decorated my bedroom and I will suffer later. I am sure I got this through packing rat poisen in a small confined space when I was 25 two years before the sarcs struck. I will die from it I am sure of that but am grateful for the good days when I feel almost healthy for a few hours. Good luck and prayers for my fellow sufferers.

  17. Since being diagnosed in 06 this disease has never gone into remission. I feel like no one understands, I hurt all the time, tired all the time and been on prednisone for the better part of 12 yrs even before they knew what it was. I can’t say I’m happy reading all of your comments but it gives me comfort knowing I’m really not alone, I’ve never actually met anyone else with this disease. This year it has spread from not just lungs, lymph nodes but to my heart, liver, and gastrointestinal tract. The doctors look at you like you’re making up the symptoms. Recently they started me on cellcept to try and bring it stable again but I feel worse, I’m to the point I wish it would just do its worst already, thank you for sharing your experiences.

    • nancy gillingwater

      so sorry your in so much pain,sending prayers your way.I totally get it,been suffering since 2005 also have cardiomyopathy with ventricular tachycardia.

    • hang in there sean believe in the power of the cross of christ he helps me clean an entire bakery with this dreadful disease -please dont do anything rash you are worth all the gold in the world -god bless

  18. This will be my final post on here. Thank you for giving me the opportunity to write in your blog Stuart,

    Good luck to you Stuart and everyone here.

    Good Bye

  19. Hi …. Thank You for the posts everyone.
    I have Sarcoidosis, I was diagnosed 18 months ago after I was so ill that the paramedics had to be called, I did know I was ill and getting worse and thought I had lung cancer. The results of a lung biopsy confirmed I had sarcoidosis.
    I am presently on no medication other than painkillers. My joints hurt and a cold or chest infection lays me low. I have recently lost my Mother who had a lung problem and a few years earlier the same took my father.
    The future look bleak, and having seen my parents deteriorate …… I know how to die, the last lesson that I was ever taught my my Dad. To go with dignity.

    so ….. Why the post from me. I could complain why me, I could complain why no solution to the disease……… The reason for the post is Why Do Others Not Want To Listen to What Sarcoidosis is about. Sarcioids get little sympathy. There is no recognition that we can be fatigued , worried, ill or just feeling unwell.

    I read the posts and I think I am doing well – considering what others are going through. At the age of 54 I am still young at heart and keeping positive, although at times the condition does get the better of me and a tear is shed.

    Good Luck Everyone. Let’s hope that cure is around the corner.


  20. Well, I’ve been off Prednisolone now for 5 weeks. That is the good bit….

    I have been in hospital for the past 4 days after I was taken there for chest constriction and pain.

    I now have myocardial sarcoidosis. I know I have limited time. Death can be sudden or I can last maybe 5 years at best.
    I have nothing left within me to keep going. Because of the latest diagnosis, I will need to go back on the Prednisolone again, and , I just cannot go through that again. I really just, cannot do this any more.
    I’m tired, fatigued and my battered body cannot cope.
    For me, it is the beginning of the end.

  21. Michael
    My Brother was diagonis with this disease and please let me tell you don’t let any Doctors or anybody esle tell you that this is a deadly disease. He found out he had it when he was 25 he live to be 68 he went through every treanment you could think of and even a lung transplant it only prolong his life for a few years I lost him this year and I miss his because of this disease. but take care of your love ones and don’t let them do a lot rest is important.

  22. It’s hard to understand. I live with sarcs from the outside. I watch him everyday. The way the prednisone sends him into overdrive, he pushes himself to still do the things he could do last year. then a few hours later it wears down, and he’s tired and irritable, but I tried to tell him he couldn’t work that hard. Then he gets mad cause he hurts too bad to work. but there are bills, and still he doesn’t qualify for disability, so he tries to drag himself out of bed, and go back to work. He is either in pain angry or worried or all. He has panic attacks, and his joints give out, and he can’t breath right.But his doctor has never seen sarcoidosis, and from what she and everyone else has read on line he will get better in a year or two. What if he doesn’t get better in a year or two? Is that when the doctor will take his pain seriously.?

    • go get another opinon from a neurologist who cares. I understand my husband and I went through the same thing. Do not give up and find another Dr. quick. We did and thats when we recieved what we needed to live through this experience.

    • Living with Sarc

      Your husband is eligible and can get on disability, he needs to put down on his forms he is not suffering from panic attacks. I’m sure by now he also suffers from at least mild depression for all it does to him and what it prevents him from doing in his life now. Put these things down on the forms, they may decline him the first time (that is common, most people get declined the first time about 90% actually) but appeal, and he will get it eventually.

  23. My ex as sarcoidosis and they just told him it went from just being a immune deficiency to immune auto deficiency does anyone know about how long he could live for? Dr’s just gave him merinol for his nausea and pain pills cuz hurts to breath and the medical won’t even cover his meds for two to three weeks or if at all. ..

    • As far as I know sarcoidosis is considered an auto immune disease, with a pretty low fatality rate (at least according to doctors, online papers on studies done etc.). Look into a clinic in your area by chance? Usually if you can’t afford to pay for medicine to treat a chronic illness like sarcoidosis, they work with you to get the help you need. Well, in America its like that most of the time, but our whom healthcare system is a nightmare mess, worse with new problems but at least they help you even if you’re in a situation like mine. I’m unemployed and broke, they’ve helped me get into some programs that have probably helped save my life at least once for sure.

  24. I just turned 25 in July. Been feeling funky since last August after working in Arizona for a bit (I’m a Washington state native, I just thought maybe the heat was beating me up). Well a year goes by and at the tail end of August 2015 I had severe chest pains. The problem? Sarcoidosis in a lymph node right tight near my heart. I am a medically disabled United States Marine, who quit smoking when I started feeling off. Lungs look great for now, but from what I’m reading here that might not be the case for long. I live off 587 dollars a month, cant work because of my right leg, back and now this lovely sarcoidosis. Is there a hope it’ll pack up and move out of my life, or am I going to be awaiting a sooner, more painful and still slow death? I can’t afford drugs and from these side effects in glad of that, really. Find me on facebook, this same name, and help me out please? I’m nervous and trying to hang on to some hope but I have always believed in truth above all. Bless all of you, I have become one of many again with this diagnosis. Brothers and sister I hope I can beat it, that all of you, can beat this.

    With Love and Hope for everyone here,
    Derek Sobota.

    • Derek, they discovered that I had sarcoidosis at 37. Two years of prednisone put it in remission for 20 years. Stress brought it back about 10 years ago and I have been struggling with it ever since. So my advice to you is see if prednisone will put yours in remission……………and try to keep the stress out of your life. I think it is affecting my joints and bones now because I ache and my chest stays congested. I am now 67.

      Good luck.

    • I am a vet and I go to the VA for my medical treatment. They have been great. Prescriptions are $8.00. Apply online or go to hospital and talk to patient advocate. I have have sarcoidosis for 15 years stage lll.

    • i really feel for you derek another vet a lady says she gets meds for 8 dollars – i take prednisone it isnt expensive and i reall believe it does help – ive had sarc since 2010 and i was in USAF -please hang in there have positive attitude-GOD BLESS

  25. Hello Stuart, I’m now down to 7.5mg of prednisolone. It’s not getting any easier.
    The symptoms are as before, with the addition of migraines and nausea causing deep pain down the back of my neck. It starts at the nape of the neck and down to the shoulders.

    The natural cortisol produced by your body has a latency as it adjusts to the dropping levels of prednisolone. This is why I feel like crap when ever the dosage changes.

    I don’t cope with prednisolone at anytime. This is a nightmare that refuses to go away.

    • i get migraines also and sometimes the chills come on for no apparent reason whatsoever im on 5mg a day prednisone just for stabilization im very afraid it will spread but i believe in GODand i just know he will let me live somehow i pray for you too

  26. i dont even know whether im suffering from this disease or not.
    i often sweat while im asleep.
    i overthink.
    my hands and feet sweat too much
    recently i am having some problem( like some sort of uneasiness in my chest)
    i have not visited any doctor yet. i came to know about sarc just now as i read the above articles. im only 18 n im really scared right now. someone plz advice me what doctor should i be visiting . plz reply to my article .

  27. Diagnosed with sarcoid 07.lungs. Was on prednisone for 12 months but didn’t have withdrawal s like others. Had last xray 12months ago showed no change. I have never put on weight whether I force feed or not. Generally I have a poor apitite . this flu I have now is taking longer to shift. Is this normal?

  28. I’m now down to 10mg/day of prednisilone. I was warned by my doctor about the withdrawal. So I was expecting pain, nausea, dizziness sleepiness and memory lapses.

    Now I am losing whole days to sleep further disrupting what little remains of a coherent sleep pattern. It is 0256 hours and I cannot sleep if I tried, though I will try again after writing this.

    Withdrawal does not get easier, it get’s worse with prednisilone. Every time you take it, you suffer more. I feel worse now than I ever did coming off previous courses.

    It would be remiss of me not to warn those who have been recently diagnosed what to expect.

    Don’t forget to practice your diaphragmatic breathing. It does work and does give relief.

  29. Please remember everyone.


    I have vaccinated against everything I can.

    Aside from the yearly influenza shots, Pneumonia is another critical disease to guard against. I nearly died from it.

    For those who are struggling with tight painful breathing.

    Learn to do diaphragmatic breathing:

  30. Hi I was told I had sarcoidosis last year and last year in July 2014 I had surgery to remove 6 parts of my lung ! A year later and I have had the all clear from this I do not need treatment I just need to keep going back every 6 months to make sure I am still clear ! I do feel for all you people who have got it and it can not be cured !! It is a horrible thing and not enough people know about sarcoidosis! ! Speak the word about it help get it known so we can all help find a cure

    • I pray for you all. Wish I had found this site 1yr, 6 months or even 1 month ago. My beloved nephew David passed away with Sarc July 28,2015. You all are so right. No one takes Sarc as serioully as they do say Lukemia, Cancer etc. He suffered so much but he was not a complainer and always thought of others first. He was a slight fellow and was never a great eater but all assumed he did not eat much because he insisted on organic food but he had no income to support that so it made no sense that he would not eat whatever he could as long as it was nutritious. He was very private and had difficulty sharing the turmoil that he suffered but he never stopped going although the family continually told him to rest. Please if you have Sarc and need help sit your family, friends etc down tell them directly what you need or have them read this blog. I miss him so much but I feel that I failed him because I did not hear him or I was not listening. Wish I could have done more to make his last years about enjoying life and supported whatever he wanted to eat and do instead of trying to dictate how he should live and eat.(Always thought there was more time). WE will pray for a cure and pray for you all and pray that the word about Sarc, symptoms, emotional tolls, and hidden suffering gets out to the masses. thanks for listening.

    • thanks paige and im glad your better -god bless you

  31. My husband was diagnosed with sarcoidosis in 1998. He suffered many years with this terrible disease. He went on oxygen in 2004 with 50% lung function. Erick was on prednisone for all those years and the doctors didn’t want to do further testing. Mostly I believe because Erick wasn’t interested in where else he had sarcoidosis, his lungs were bad enough to deal with. He did see a specialist in August 2013, who told him sarcoidosis was still active. It seemed like he lost heart then. He lost a lot of weight and had several problems with kidney stones and other infectious. February 1,2014 he developed pneumonia and died in a matter of days. Erick was a strong man emotionally, he was the best part of my life and we loved each other so much. He was only lived to 50. (His older brother also had sarcoidosis mildly) this is a terrible disease and I strongly believe that it isn’t taken seriously.

  32. Stacy Sinibaldi

    I have had sarcoid since at least 2009, but not diagnosed until 2012. My case is mild, no treatment except ibuprofen for joint pain. Skin involvement, lymph nodes, salivary glands, minimal lung involvement. Calcium levels borderline. I so feel for all of you who are struggling and suffering. Peace to everyone.

  33. Well, I’m suffering withdrawal from another course of prednisolone. The sarcoid had indeed flared from the time of my last post in May of this year.

    I don’t feel well and I’m tired of fighting it. The sarcoid has won. Breathing is an effort, let alone doing anything else with a constant pain down the entire length of my breastbone.
    The uveitis has left my eyes sensitive to light, I have to wear dark glasses when I go out. My next pair of corrective glasses for indoor use will tinted yellow to filter out the harshness of electric lighting.

    It is time for me to die now. If there was legal, controlled euthanasia in Australia, I would not be writing this.

    Instead, I will still be here suffering, with no outward physical signs of the disease.

    • Hi Gary.

      I absolutely understand you. After being rushed to hospital with a heart problem, I started loosing ‘it’ in May of this year. One of the things that really annoys me is folks lack of understanding, they compare us to other illnesses.

      Illness and death is not a competition, we are not scroungers. Sarcoidosis mimic’s, mask’s, and mutate’s any other condition, and without a cure.

      We have to keep pushing on…

      • Yes, Stuart. There in lies the problem.

        How do you describe a disease to someone who;

        Hasn’t heard of it to begin with (I hadn’t until 2008/2009)
        It mimics other diseases
        It’s an auto-immune disease (try explaining the significance of that)
        It doesn’t directly cause death, just sets up the conditions for something else to do it
        You look completely fine if you have not the terrible skin symptoms
        The doctors know very little
        There is no wide spread media coverage, unlike cancer, heart disease obesity, the ICE epidemic, smoking related diseases etc.
        Since it is “invisible”, it has no government funding in research.

        I don’t blame the general populace not understanding it. It is not their burden to do so.

        I have just helped my parents re-decorate their home. Since my father is elderly, I did the bulk of the work on the walls and ceilings. It was completed over 3 weeks ago now. I’ve still not fully recovered.
        I sleep for hours longer than I want to. Even after I wake up, I still feel tired and sleepy. The joints in my hands, particularly my left hand, since I’m left handed are still swollen and painful.

        The full onslaught of my osteoarthritis pain hasn’t hit yet. One of the (few) beneficial side effects of taking prednisolone. As I am going through the withdrawal, so the pain is steadily increasing.

      • That’s very well put Gary.

  34. Hello my name Ladonna and I was diagnosis with sarcoid in 1994 when I was 25years old I,am 45 years old now the eye doctors found it in my eyes the they ordered for me to talk a chest xray then they found it in my lungs I been doing ok with this diease but it really takes alot out of me and people dont understand that just because I look good from the outside dont mean I feel good on the inside but I’m standing I’m still here and I’m still blessed

  35. Thank you for the informantion. My mother was diagonosed with sarcoidosis. This helps me understand the symptoms

  36. I’m sick of fighting this disease. Sick of the pain. Sick of people saying ‘we don’t want to hear about it’. Sick of the restrictions. Sick of being told not to quit. Its my life! I just want it over with!

    • nancy gillingwater

      Hang in there my fellow Warrior!!! I so understand what you are feeling tho.My spouse is sick of hearing about how sick I am and it leaves me feeling like I’m alone with no one to vent or talk to without upsetting them ;-(

  37. I was diagnosed with sarcodosis in 1995. I was covered in bruises. The hospital wasn’t sure what was going on with me. They had never seen anything like it before. They asked if I would mind having pictures done of this. Since then things have got worse my lungs arnt good and I’ve got angina due to the sarcodosis. I’m on predisolone and nohow horrible these side affects can be. I can understand what you are all having to deal with.

  38. hi all , not having a good day today flare-ups all day long must have used my emergency inhaler 5 times feels so much like massive indigestion heavyness in chest always think im gonna have a heart attack does anybody else experience this?

    • Yes George. That breast bone (sternum) pain is a constant for me.
      It feels similar to gastric reflux or indigestion. It is the lymph nodes that have become tight along the sternum. That is the pain.
      Just to complicate matters, I do get indigestion because of the prednisolone and take Gaviscon to relieve it.
      As for the constrictive tightness, again, a constant feature of my sarcoidosis. It is as if someone has put a band around your chest and tightened it with a ratchet tensioner .

      My chronic asthma doesn’t help.
      Spring is coming with all of the pollen and dry grass. We will be having hot and humid weather during Spring up to 40C in Adelaide.
      Summer brings 45C heat that can drag on for days, sometimes weeks.

  39. gary you may be right in 1990 -1992 i worke for an environmental company an d worked with PCB”S DIOXIN AND OTHER HARMFUL STUFF I WORE PROTECTIVE CLOTHING but the dr said i may have breathed in something that took decades to come out that may be linked to it i dont know but it sure is debilitating i have attacks as well anxiety too and it only heightens the sarc -THANK YOU ALL FOR SHARING I KNOW NOW THAT IM NOT ALONE IM ALSO A RECOVERING ALCOHOLIC I WILL HAVE ELEVEN YEARS JUNE 19

  40. i have had sarc since jan 2010 guess my five years are up its stable in lungs but you can hardly see my ribs in x-rays i have had the vats too video assisted thoracsic surgery was out of work for 9 weeks that was when i was diagnosed i cant shovel snow and im a custodian at a high school in central Nj I ALSO CLEAN AN ENTIRE BAKERY BY MYSELF work at a vocational high school everday i pray pray pray me too think i dont have much time left and im 54

  41. hello everyone glad i came across this site i have sarc also only in lungs though if thats not bad enough feels everyday at some point like im gonna have a heart attackand the prednisone is some weird stuff i think it messes with my emotions sometimes i feel like crying i feel for all of you and i wish i could just blow it out tired of going to lung dr and doing stupid tests thanks for the special song for us also – god bless you all

    • hi all this crazy fatigue is very bothersome and i cant even go on a treadmill for more than fifteen min and i feel tired all the time what do you do i try to get enough sleep does anybody have an answer oe opinion lost in sarc -geo

  42. I was diagnosed with sarcoidosis in 2000. It has been in my colon, sinuses & back of my arms. Now 15 years later it is in my lungs. I believe I contracted the disease from 3 units of untested blood in 1983.

  43. Hello, one year on.
    I’ve been off the prednisolone since December 2014. I’m still suffering the effects of it, some changes have occurred.

    I’ve lost 15kg in weight and about 160mm off my waist. This is due to two things: excess fluid loss since stopping the steroid and a dramatic loss of appetite. I only eat 1 meal a day, I cannot seem to go beyond that. Can’t eat meat or anything that is rich or heavy either. Things that I could eat once are no longer tolerable or have no desire to eat. Nothing is the same as it was.

    As far as my lungs go, the result is not good. Painful, tight breathing that takes a significant effort. It’s even worse if I have an attack of asthma as well. It is easy to pick the difference between them.

    I have had another uveitis attack in my left eye. I’m taking prednefrin drops drops for it. The main worry is, I’m exhibiting the other symptoms I had in 2013 that suggests the sarcoidosis could be active again.

    I also have yet another chest infection since my immune system is shot.

    For all I and my doctors know, I probably had sarcoid for decades. Indeed, it will explain a lot of other problems I’ve had over the years, but have never been fully understood as the sarcoid mimics other diseases. For example, I ended up in Oncology with suspected leukemia because of rising white blood cells. It was later disproved, but it caused much consternation.

    It is only now that sarcoid is showing it’s ugly self.

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  46. Hi Fellow sufferers,

    After testing for another chest infection and three different biopsy’s was diagnosed with sarciod. It’s in lungs, lymph nodes in my chest and pelvis and other places as well. Have been on prednisone since Oct and have been cut back once already then uped again. I feel bad for anyone with this damn disease. Thought I wouldn’t make it until Christmas but the steroids have helped some. Keep fighting, those of us that have it.

  47. Got diagnosed around 10 years ago- breathing problems and heart palpatations lead to the diagnosis. Its very bad in my right lower lobe (lung) and has since spread to my right leg (lost a small patch of leg hair) and is now affecting my spleen. My spleen is so enlarged it causes physical pain, however I’m afraid to get it removed because it helps so much against issues that the sarc creates.
    all and all, its a terrible disease to have and I hope those of you who do get this problem a speedy recovery. I quit the steroids because of issues they caused and just try and exercise as much as possible now and just stay positive.. could be worse.. it could be cancer… Good luck everyone!

  48. I to have been dealing with this dreadful disease. I cam down with it at the age of eleven. But no one knew why I was sick. I’m from Concord NC. At that time I had 2nd Doctors. From all over NC. I was dreadful sick and lost concise. Temp. 107. Pack my body in ice. I’m 53 now. Yes it did go away. But came back with vengeance. In 1992. Liver and lungs. At times I wonder how much longer do I put up with this dreaded disease. I to do my best to make it. So I pray a lot. Tired of being sick. Just tired. At times my body feels like it’s been hit by a truck. 20 wheeler. I going through a lot right now. Stress is the worst. I will pray for you all. Pray for me. God bless. To the young and parent. Find u a specialist. Emergency room do not know what to do. We must in courage one another. Email… [email protected]. Thank u all.

  49. I was diagnosed with Sarc (Lung) back in 1993 and initially treated with predisone which I stopped after a short term due to its’ terrible side effects which I had researched online. And thru my continued research, I found The Marshal Proticol ( which I have been on since 1993 and was able to return to a normal life. My constant coughing and fatigue has all but dissapeared and have been able to walk, workout, and enjoy my life. I can only tell you that it gave me my life back and it would not hurt to check it out for yourself. Best of luck . . .

  50. My brother died suddenly at the age of 52 from a sudden heart attack caused by Sarcoidosis. The medical profession failed to diagnose him for many years and by the time they did the damage was already done to his heart.

  51. I was formally diagnosed with sarcoidosis in 2009 during examinations for my asthma.

    The sarcoid has flared significantly in late 2013, starting with uveitis of the right eye and quickly spreading to the left eye in December 2013. It was then, through X-rays of my lungs, a lung CT scan and lung biopsy, that indeed, the sarcoid had spread to all of my lungs.

    I’m taking heavy doses of prednisolone that makes me more nauseous than I was, I am constantly tired and fatigued and cannot breathe easily. My heart rate is racing despite blood pressure tablets.

    In addition I have highly unstable asthma and I am prone to lung infections.

    What makes me angry is, I have never smoked in my life, never drank, never taken illicit drugs.

    My future is not good, I am deteriorating with every week. I have had lung infections already and it is not yet winter (Australia).

    The way I am right now, I am doubtful I will live much longer.

    • 12/22/2014
      Hello Gary,
      I am 65 yes old, I had sarcoid since I was thirty. I in agreement with you I truly don’t think I have much longer. I been on oxygen for 10 yes now, but it only a small help. I can barely move sometimes. I’ve been on steroids for thirty years I’m a small person I didn’t let the steroids make a big person. But I’m having a hard time of it now being cold helps to breathe I have asthma, diabetes, emphemzma. God bless all of you.

      • I happened to have a doctor who’s two brothers in law (both brothers of his wife) developed sarcoid. Both have died within 20 years of being diagnosed. Whilst in the waiting room of my thorasic specialist, I struck up a conversation with a woman who was suffering constant asthma. She had friend who’s husband died of sarcoid. Again it was around 20 years after first diagnosis.

        Using this information and looking at the severity of my symptoms, I estimate I have about 15 years left. I won’t see 67.

        Tired, so tired.


    • Hello i was diagnosed with sarcoid in july. I was sick since march i went in with chest pain and difficult breathing.they did a cat scan and found out i had pneumonia and very latge lymphnodes in my chest. After three surgerys and multiple hospital stays they finally gave me a answer i am at stage three and i have fibrosis in my lungs im also on oxygen the treatment isnt working im on 2 20mg tab of prednisone and also plaquil and instrad of it supposly make me feel better i feel worsr im shakey still get really tired and the pain in my chedt and lungs is horrible i cry every night i sweat alot at night n now i noticed my appetite is going away. I want this to be over i hate it n also my calcium is high and now i have. Kidney stones .my body swells up causing my sciatica to act up to i try to not think about but its a everyday battle that i am obviously losing. people say but u look fine u ant sick n its not gonna kill u but iit can and in my case im afraid it is ….

  52. hello my name is scott and i am 12 year old boy with sarcoidosis in my lungs and could be in my other organs and my sarcoidosis can not be cured but taimend so it dont sptreD thank you for reading 🙂 hope you guys get well soon xx

  53. My beloved Ike, a Vietnam vet who was exposed to the metal used in making weapons, which has been linked to sarcoidosis, died from the disease. As a RN to vets, I have only word of mouth evidence, not a scientific study, but a whole lot of vets with no sarcoidosis in their families, seem to be getting sacoidosis, blacks with much grimmer outcomes than whites. More funding is required and studying of this awful disease needs to be done. It’s been around longer than Aids, and Aids gets more funding…. Keep on singin’, man!

  54. steve hetnandez

    Thanku for your song. I have really painful, debillitating sarcoidosis. Sucks but im not alone.

  55. Hello Stuart
    I live in South Africa and I have Sarcoidosis. Thanks for the informative website and videos about the disease.

  56. Thank You Stuart, I too battle this awful Dragon. It is nice thar someone takes the time to discuss this, and your music isn’t bad either :). Keep up the good work !

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