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.

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

  1. 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

  2. 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.


  3. 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.


    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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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 .

    • Yanni………..I first went to the doctor because I had a squeak when I breathed in. Physical and xray showed symptoms. They did a biopsy to confirm.

  10. 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?

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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.

  16. 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

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

  18. 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!

  19. 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.

  20. 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.

  21. 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

  22. 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

  23. 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

  24. 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.

  25. 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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  28. 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.

  29. 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!

  30. 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… Thank u all.

  31. 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 . . .

  32. 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.

  33. 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 ….

  34. 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

  35. 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!

  36. steve hetnandez

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

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

  38. 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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