Life Expectancy

I am a 40yr old male with Neuro,Cardio and Pulmonary Sarcoidosis. What is the life expectancy of individuals with these types of Sarc? Also I often see people in different stages of sarc. How do you know what stage you are in.
Thanks Patrick

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Stages are only used in pulmonary sarcoidosis and only for the purpose of conveying the extent of the radiographic image. Staging is no reflection of the severity or prognosis of the pulmonary sarcoidosis. Stages 1 through 3 have been known to reverse.

Stage 1 bihilar lymphadenopathy
Stage 2 bihilar lymphadenopathy and reticulonodular infiltrates
Stage 3 bilateral pulmonary infiltrates
Stage 4 fibrocystic sarcoidosis typically with upward hilar retraction, cystic & bullous changes

I'm afraid I can't help you with your other question and I'm not sure if there is even any data on it. I imagine it is a question of how advanced the disease is and what damage is has caused to the function of vital organs.

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I have pump, neuro and systemic sarc (not cardiac). Careful when/if you research life expectancy/prognosis.

Everyone is different so I don't believe there's any way to predict.

Please make sure you have qualified docs to treat you. That makes all the difference in the world.

Bev

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I plan on living forever.
So far - so good.

I think it depends on how well you manage
the disease and control flares.

Proper Diet (this is one of my non-compliance items)
Sun Avoidance (My strong suit)
Not smoking tobacco - maybe vaporizing herbs is helpful.
Controlling stress
Knowing what meds work for YOU and which don't.
NOT falling down the basement stairs or walking
in traffic blindfolded.

Personally, I do not follow my own advice in order
to live longer. Who wants to add more time to this
misery-filled life? I want to enjoy what things I can
and if that action takes 3 daze off my life, so what.
I tell my providers that I just want to control the
pain and will not take any major treatments for
a cure. Like if I got some serious cancer, I would not do radiation or chemo or surgery.
I am not afeared to go floating in the Nordic canoe.

Talking about canoe, do you remember when Canoe was
THE smell du jour for males? 1964 maybe? High end stink
that was more better than Hai Karate or Jade east. BUTT,
Karate and East would burn in a Zippo lighter.
Flame the smoke of choice and incense the air.

I watched my father (aka Daddy Dearest) go down with
Sarcx of everything and die at 87. The last 5 years were
spent waiting for a stranger to come in and change the
diaper. Maybe. It also caused dementia and he
was a stranger by the time Hades called him home.

I personally have experienced dementia while
abusing creme de'menthe mixed with
Everclear and a beer chaser. Mine cleared up
mostly, butt I still have some fine and
precious-memory-inducing photos of college in the 60's.

Hold on, the door is ringing.
.
.
.
.
Back.
Was just the probation, parole and bondsman
checking up to make sure I am happy.

later

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GOD WILL LET YOU KNOW. NOT A DOC

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I have been living with Pulmonary Sarcoidosis sense the 80's I still get out and enjoy my wife and Motorcycles the one in the picture is used when the wife wants to go with. She is afraid of falling asleep sitting behind me on my big bike. Find something you really enjoy doing and do it (if it is legal) and hearts no one else. I feal this is what helps to extent live and some praying won't heart.

Try to keep positive

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Do you really want to know?

"...Some studies have reported that, more than 250 patients with Cardio sarcoidosis have survived for more than 5 years after the diagnosis of this disease..."

I understand the above. I don't really understand the rest of this, from a site called Heart Consult, I think -

Sarcoidosis Prognosis and Treatments
In reality, a well-defined Cardiac Sarcoidosis prognosis is not available but in a 5-year research, clinicians have found that the mortality rates are higher than 50%. The treatments for this disease depend on the diagnoses of the symptoms and the severity or the stage of sarcoidosis. Common methods used in the treatments are corticosteroids and anti-inflammatory medications. With some randomized trials, cardio specialists prescribe Corticosteroids that are considered as mainstay for Sarcoidosis treatments. In these random trials, researchers have found some short-term responses but long-term effectiveness has not yet been recorded in treatments. Medication with steroids is followed for long terms and the patients are advised to take immunosuppressive agents like methotrexate, azathioprine and hydroxychloroquine which act as steroid-sparing agents. Apart from these medications, surgical related treatments like placing pace makers, resection of the affected parts and heart transplantations are also followed in the treatments of sarcoidosis.

Sarcoidosis Life Expectancy
According to the various studies conducted, the life expectancy of the patients in the last stage of this disease is nearly two years after developments and the cardiac symptoms in their body. Some studies have reported that, more than 250 patients with Cardio sarcoidosis have survived for more than 5 years after the diagnosis of this disease. Most cardio sarcoidosis patients have died due to the complications and severity of this disease like ventricular tachyarrhythmia, conduction disturbances and cardiomyopathy problems. Some researches have reported 50% of the 3 year survivors and 72% of the 5 year survivors of this disease. However, an accurate evaluation of the Sarcoidosis life expectancy is still under research.

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Sarcoidiac you are a scream - lol! Personally, my sarc came without an expiration date (that day was written in stone on the day of my conception). ;-)

I worked part time in a nursing home - don't want to go there! Many were confined there for years and years until they starved to death when their will and strength (even to eat) failed them. On the other hand we have no choice in the end - so best to live and love in the now!

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Never know when it's time to " go home" it may not even be sarcoidosis that end up taking ya home. We have no idea what's ahead . Myself I'm not living for sarcoidosis I want a full life so , be happy , peaceful and now you have time to smell the roses and watch the clouds change shapes! Be a kid again! Have fun! Paula

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Thanks for all of your input. It has been really hard lately since my cardio symptoms have been more noticeable. I recently spent 4hrs in a MRI only to find out that my sarcoidosis that has been at C6 C7 since 2005 has now progressed to C5 as well. And then the reason for the pain and numbness in my legs and feet is caused by bulging discs at L4 L5 S1. This would explain more problems with balance and a increase in falls to 3 or 4 a week. I have used a walking stick for years I am afraid that a walker is in my near future.
Again thanks for your feed back it gives me another perspective to look at all of these issues.
Patrick

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Groan.

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Hi Sarcoidiac,
just to let you know I thought your previous post was great....thats the way to look at life and I'm with you totally. Got a great smile from reading that so thanks for making my day that extra bit better............always look on the bright side I say or at least as bright as we each can handle. ......Cheers Shani.

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No one can say for sure how long life expectancy is. I know I have pulmonary sarcoidosis and probably other areas. I know my lymph glands are swollen, and I get weird rashes sometimes.
I have hoped for a miracle for years. I have had dystonia for 21 years, and was diagnosed with sarcoidosis last May. For years the doctor's thought I had ms because I have numerous lesions on my brain, then and ms specialist told me it was not ms. That was after 20 years of thinking I had it.
Life is a mystery, and no one has all the answers.
Angela

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Dearest and Lovely Shani_NSW
You are obviously a highly intelligent person
with great taste in literature, true inner and outtie beauty
and love of truth in life.

laissez les bon temps rouler
S.

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Thanks for your comments totally my giggle for the day.
Meg

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The Sarcoidosis Doc summed up potential damage for me in four short sentences one time. 1/3 get better, 1/3 stay about the same, 1/3 get increasingly worse, and just a few go to their final reward. Then he told me that he has several 85 year old patients. Seems pretty much like the luck of the draw.

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I was diagnosed with Pulm. Sarc 20 years ago. (It has spread over the years) 19 and 1/2 the Pulmanoligist that was treating me gave me 6 months to live because my Sarc was not responding to treatment. The next Doc. I saw told me that 10% of me getting better was me having good doctors (which good has been ever changing over the years) and time spent with that good Doctor or having to move. 10% was the medication and me taking it properly. The other 80% was going to have to come from my willingness to live. if I give up it would not help. There are specialist that are amazed when I return for my 6 mo check. In my opinion If a doctor is willing to give you to tell you what he thinks is your life expectancy he is playing God! I found that in my case that getting a new doctor was better that planning my funeral. But making plans for my demise legally and for my funeral did happen just in case. Getting a new doctor seem to help more with me still being around. I know that this disease sucks! Every time I go for new test or appointment the Doctor tells me that ''he has never see this before'', ''I am unique'', ''I can't believe that you are still here'', ''I can't find any reason that you can move your arms'', ''You have not had that transplant yet!'', ''the bone in your hand fell apart"(which all has happened in the past year). So with all that being said I have 3 fantastic children, a wonderful son-in-law, The Greatest grandson in the world, great friends and everything possible to live for. If I have the ability to get out of bed I am going to live LIFE to the best of my ability with oxygen tank in tow! Just for today I am not going anywhere!! Life is about the journey not the destination!
God speed,
Erica

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Opinions about life expectancy are just that, opinions. So many doctors don't really understand this disease. I still have a doctor that asks me at every visit if I am fine yet, because the disease has had it's hold on me for two years, and should have run it's course by now. I also have doctors that tell me that an inflamed spleen does not hurt. What a bunch of hooey!
I am currently waiting for my appeal date (on the 14th of March) and am frustrated knowing that so little is actually understood about this disease. All I know is that some days I can do things (like get a small amount of groceries, or take the dogs out for a very short walk), and some days I can't. I want to stay in bed and let the world pass me by. I have found that my Nook Tablet has gotten me through many of those days.
The days that you are able to get up and move, do it. I know that sometimes you know you will be "in for it" the following day, but ya probably would be in for it no matter what, so go for it. Enjoy what time you can with your family. They will learn to be flexible and understand that you can not predict how you will feel from one day to the next. This disease sucks, but life doesn't have to. Give your kids a kiss, pet the dog, and grab a beer. *cheers to you all*

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Hi! I'm pleased with the many response who stated - unknown - Irene nailed on the head - I've heard doctors say this and say that about a patient - sometimes the patient can outlive the doctor. I cancer that was 95% reoccuring - no lymph node involvement. I'm now considered cured. I was not supposed to be born. I was not expected to survive whooping cough and pneumonia on my 3rd birthday - (not too many ways to treat it in 1943). Supposed to die when I had measles, pneumonia and a blood clot on the brain when I was 11. Our doctor said all you can do is pray. The list goes on. God has numbered the days of my life, and yours.

We need to enjoy what we have. There are times when that it is easier said than done.

I see the neurologist in March - hope she's a good detective, because I can't have MRI's - I have an implanted heart monitor. Physical Therapy has helped me a lot - my balance is better - I'm not walking like a drunk when I am tired - My whole spinal column is affected by something - the thoracic area was the last to go.

I just don't want my family to go through Ahlzheimers with me. - I will never learn to spell that word, no matter how hard I try. I work 2 days a week, sell on ebay - and try doing as much as possible, which isn't much.

Try to be a blessing to others. If I can bring joy to someone else, life is worth living.

Blessings and hugs - yes, I hug the men too - my husband doesn't mind - being older lets me go there! Great-Gram

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Patrick,
The best suggestion is to find the best docs. Your sarc is obviously throughout your body. And yes, while we all can hit by a bus tomorrow I believe you were looking for the best scientific knowledge you could obtain relative to your question.

Now from what I can see many people have shared their
religious/spiritual beliefs. All good

I personally do not subscribe to the theory that my date of death has been set (at least not yet). Humans are born with the power of choice, free will. So if some jerk murders me tomorrow or I get hit by a bus it's because some idiot chooses to kill me or run me over (or I'm
distracted enough to get hit by the bus). We make choices everyday that affect our lifespans.

Some smoke, some overeat, some over juice, some ignore all traditional medicine, others ignore all homeopathic
remedies and supplements. Do these choices affect our date of death? Sure they can.

Do prayer, mediation and healthy living enhance our lives
in a healthy way and increase our lifespan. Absolutely IMHO.

All you can do is reasearch, advocate for yourself and make the best choice of docs, meds, lifestyle and natural
remedies you can. Minimize, minimize, minimize stress (I
say this 3 times because I have a hard time learning to take that bit of advice).

If everything were pre- ordained what difference would it
make as to what choices we make? Again, this only my personal opinion. For the most part, I respect the opinions of all who have replied. Angels may have my back, but its up to me to do the earthly footwork as best I can.

Although I do not have cardiac sarc (yet) I believe that I'd make up my mind to be in the % that survives. Is there a guarantee? No. But as the prior posts show a good
sense of humor, a positive attitude and doing the best you can all helps. Stick around. We may be a bit of a motley group that approach our sarc in our own best way, but we are a good group. Do we agree with each other (sometimes lol).

Here you will find humor, science, religion and spiritual beliefs. Take what you need and leave the rest. Know that science is ever evolving and that we are here spiritually and emotionally for you with great advice as to how to best handle all your symptoms.

Search out others who have cardiac, neuro and systemic sarc. There you will find people who truly understand where you are coming from. Hang in there. Many of us have defied the odds where sarc is concerned. Many of us Eventually pass from sarc complications but there is no need to rush.

Stick around. You'll be glad you did. And oh yeah, watch out for that bus.

Peace and all good,
Bev

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auntbev,
I really like what you have to say. Much more insightful than my fatalistic two line comment. We all have choices to make each day that can steer us in a more positive direction.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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