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.

25 Responses to Can sarcoidosis cause death kill or be fatal

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

  2. 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!

  3. 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.

  4. 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?

  5. 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

  6. 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

  7. 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

  8. 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.

  9. 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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  12. 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.

  13. 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!

  14. 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.

  15. 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 . . .

  16. 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.

  17. 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.


  18. 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

  19. 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!

  20. steve hetnandez

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

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

  22. 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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