Life expectancy & more for those w/ chronic sarc

If you have not been confirmed with "chronic" sarc, this should be something you perhaps ignore for the time being.

Also nothing in these studies are 100%, you may indeed have a different outcome. Most studies show most of those who get sarc will go into remission for it within 2 years, those who do not move into the "chronic" group.

I'm not trying to be negative, this isn't my data nor my studies, they are from people trained in doing research. I hope you are open minded enough to just take this as information about a topic that can be sobering.

I have chronic sarc, I've been on a couple of sarc drug treatment programs over the last 3 yrs, currently I'm not on any drug therapy for sarc. I have two 1st cousins who also have sarc, each of us has a different set of parents. Of the 4 siblings in our parent's household, 3 out of 4 of brothers produced children with sarc. However, we were all also born in the same area in SE Ohio back in the 1950's, however I left that area when I was 5yrs old and never returned. Thus it appears there is a genetic or environmental link in our family.

Our doctors give us advice and treatment, however getting information (current info) from other sources, getting 2nd and 3rd opinions is also good. The internet is full of quackery, trying to pull our hope and thus $$ in all kinds of directions.

This link .....
http://www3.interscience.wiley.com/journal/119643452/abstract?CRETRY=1&SRET RY=0
says the expected life expectancy for people with chronic sarc is age 50-60 yrs old, with 75% dying before age 60 due to sarc related complications.

I bought this book, its pretty steeply priced, and its 100% studies and papers from sarc dr's and researchers to other dr's and researchers, however if your as anal as I am and like working thru data, it's a very useful book.
http://www.amazon.com/Sarcoidosis-Issue-Clinics-Chest-Medicine/dp/141606279 3/ref=sr_1_20?ie=UTF8&s=books&qid=1275232445&sr=8-20
In the above book, the last paper is on "Outcome of Sarcoidosis" it is several pages long and it examines how several treatment programs have affected or not affected the outcome. It backs up every statement with another study. The abstract is here, however the abstract is nothing of the entire article. http://www.ncbi.nlm.nih.gov/pubmed/18539245 However, the following is one statement I thought was enlightening "it remains unclear whether immunosuppressive therapies delay the process that resolve this condition. There also have been on going debates as to whether the therapies influence the outcome of sarcoidosis positively or negatively."

This article "supports" the use of corticosteroids in treating sarc ....
http://www3.interscience.wiley.com/journal/119643451/abstract


Other abstracts regarding sarc are here .... http://www3.interscience.wiley.com/journal/119643374/issue

this is an excellent article providing a general overview of sarc .....
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary /sarcoidosis/

a site that is biased towards one treatment, but they look at the ACCESS study, the largest study ever done on sarc.

Another link sites data that 2/3 of a study group saw no improvement, or that any improvement "was not statistically related to whether patients did or did not receive therapy".


http://www.pulmonaryreviews.com/apr02/view.html


So much data, so little info we can count on, so the bottom line after you've done your own reseach and made your own choices, live life well, the best you can. Many people who have come back from death experiences say, "I now live each day with all I have and make the best of it." Sounds like good advice to me, and just in case, my will is done up to date.

God Bless

Harmles2

Edited June 3, 2010 at 11:15 am

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Hi Harmles2,

What a good job of researching information for us.
Because 90% have lung involvement I realize that 90% of the research is aimed at that form of sarc.
I don't know if it gives me hope or not as I don't have lung involvement.
I am 68 and I didn't see any symptoms until I was 61. So I already have beat their prediction about life expectancy. As I see it, every day is just one more day to have as much fun as possible, and one thing I find fun is helping others.
I think you do too. Thanks for sharing all this with us sarkies.

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Pearlsf,
I can sorta understand your comment about not wanting to discuss life expectancy, none of us wants to think about our mortality and more directly that of our loved ones. It’s a sobering topic HOWEVER the good news is the facts and odds are that great majority of sarc patients will live long healthy lives and somewhere around 50% will go into regression. Obviously the stats for the group that is chronic are more sobering but still far, far better than many other diseases.

Just so you know, I've certainly experienced and put in lots of thought in not letting sarc rule my life including this lengthy dissertation on how to live above sarc, I think it’s a very positive thread, I link to it in many replies, being positive and more importantly how to live it, is really important.
http://www.inspire.com/groups/stop-sarcoidosis/discussion/how-to-live-with- sarcoidosis-reprint-and-updated/

My personal experiences …..
My family has been very open about death and talking about it actually makes it easier for all of us. When my uncle was told he only had 3 years to live, that knowledge allowed me, his wife, and his kids to enjoy 2.5 yrs of close family bonding. Prior to my grandma dying we knew she was going and again got to spend a lot of good time together. I lived over a thousand miles away form my uncle and grandma, I made that drive frequently because we I had an understanding about the time they might have remaining.
On the other side of the coin, we didn’t know my mom was in serious condition, she died abruptly …. My sister also died abruptly, no chance to re-connect. My wife’s grandpa died suddenly, we had no clue he was going to pass, again no time to re-connect or say goodbye.

So I have to ask myself these questions;
If I could know the actual day of my death would I want to know? YES, then I could make the most of it.
If I could know the day of my wife’s death, would I want to know? YES, then I could make the best of it. Would I rather that death come suddenly? NO! I’d rather that be it family or friends we get some time together.
Do I know the day of my death? NO, but knowing its closer than I thought it was makes me make better of the time I have left.

For me, not only am I not afraid of death, I’m eagerly awaiting that day. We all have lived in different environments on this earth, compared to other nations in the world, I’ve had it real good, but the “rest” that death will bring me, well I’m just really looking forward to. Especially fighting several diseases at once, I’m tired like many in our group. However, I’m going to live the best I can, not only for me but those around me. My wife (29yrs!) and I are best friends and have a beautiful grown child, I want to be there for both of them and I wouldn’t want to lose either of them anymore than they want to lose me and discussing lets us all make the most of the time we have left. I've got to die from something, it will not likely be sarc, but then again it may.

Being a Christian, I believe the Bible’s teaching that there is a rewarding afterlife for those who have accepted God’s gift in Jesus Christ. Heaven is a far better place, no pain, no sickness, no death, no suffering, eternal peace and love that transcends a million fold anything we’ve experienced here on earth. The bible tells us, death is merely a doorway into God’s rest and that this life is nothing, a mere vapor in time. Like a seed, it has to die before it can bloom. I love God, he loves me, and yes, I like the apostle Paul have feelings that the sooner God takes me home the better. And I’m also comforted in knowing my wife and daughter will be there with me.
You see, death is a hope (the very thing you want pople to have) or should be for anyone claiming to adhear or believe in God's master plan.

for a couple of non believing evolutionists I’ve known who have struggled with diseases; one was also quite at peace with getting to the other side.

As for fearing death I think the modern therapists get paid lots of money to help people face their fears. Fears of flying, dogs, snakes, heights, dealth, etc can all be overcome.

I respect your position; sincerely I do, yet others may feel as comfortable as my family in “keeping it real”. The two long life success stories you told about your sister and friend should encourage others who desire to live a long time with sarc, they might otherwise never have known except from your posting here. I noted that in your profile it appears your sister is battling sarc and after years fighting sarc now on oxygen ….. I’ve been there with various family members, I can not offer anything other than a hug …. I know sarc is very real to you. (((( hug ))))

PS, have you or your sister tried Arava (Leflunomide)? Its currently working wonders for my 1st cousin.

Harmles2

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Accepting what is waiting for me in the next year or two has been easier because of the suffering involved. The are some diseases that are killing people but they are not suffering. If I felt fine and was told I only had about 2 to go I don't think I could accept it. As far as treatment goes I am taking nothing. This should not dim the hopes of people who are younger than I am. Most will probably live a long time with no major issues. Before my lung biopsy my Pulm guy said,"I would rather have sarc than Lymphoma." Last time I saw him I asked if he remembered saying that to me. He said,"yes". I said,"you were wrong". We are the only ones who really know.
Dave

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Harmles2,

Thank you for the information. I think it confirms what I have already thought in my mind; that sarc would cause my death, sooner, not later.

I have chronic, systemic sarc. It's in my lungs, liver, heart, spleen, bone marrow, eyes, skin, and peripheral nerves. The pred/mtx cocktail isn't working, so I'm going on Remicade infusions to see if this will do anything. At least it will give my poor stomach a break--the pics from my recent EGD made it look like a nuclear bomb went off in there.

I'm just hoping to get off the pred and its entourage of companion meds.

I'm 43 and figured that I MIGHT make it to 50, but if I can get another 10 years, that'll be great for my family. My docs figured that I've had it since at least 1999, but was never diagnosed until I had a liver biopsy last year which confirmed it. Then the CT scans and MRI's of other organs confirmed the sarc was everywhere. Oh well.

Todd

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silvercivic,

bro thanks for your "reality" post, perhaps your still wrestling with your prognosis, but I'm wondering ...... does talking about it and having the research papers to look over help or hurt your general well being?

Any advice for others at this point?

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Todd,

and also to you, thanks for your reality post. The fact you have sarc confirmed in so many organs at least says you have those one of a kind rare doctors who look everywhere to get the whole picture.

I'd also be curious of your opinion if talking about your prognosis is helpful or not to you personally?

If I was in your shoes at your stage, I'd ask my doctor to put me on various antibiotics over the next 6 months in 14 day to 30 day doses. Why?

I posted this before, but my last year+ round was pred/mtx just like your on now. That mix did indeed halt the progression of my sarc, but the down side was my immune system went apparently totally away, I’ve had I think 13 infections (mostly staph) over the last 14 months. I told dr, if this was progress, I preferred the sarc! I wanted off these two drugs. We both agreed to wean me off pred, then MTX. The funny thing about this is that my symptoms continued to improve thru the taper and after the tapering period. So what caused the improvement? My dr says its to early to tell, but I told him the only possible explanation is all the antibiotics I had. I also provided him with a study that indicated a biological component to the BAL from lungs in 75%? Of those sampled. I’m not a fan of the marshmallow protocol, I think it’s a sham, however I’m convinced for a variety of reasons that antibiotics can play a great roll in dealing with sarc. My doc wants me to hold back until we get several more months along to see if I continue to do better. I’m on another antibiotic now at 2x the dose.

It doesn’t make sense to me, as a dr why not try various antibiotics and see if they work? If I was a dr, I’d be willing to help my patient try something that is far less harmful than the treatments they prescribe now.

Thanks again for sharing your story.

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I believe if there's one thing patients with any condition deserve it's honesty.

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Hi Harmles2: (some of these names are difficult to type ha ha)

I read one person's comment that he wasn't diagnosed although he had it. I think that is the key. If you are diagnosed sooner rather than later, the chances of the meds working faster are better, in my opinion. I wasn't diagnosed either until later, how long I had it I don't know. But, I have lived with Sarc with a fairly normal life since the 1970's. It was in my nodes, bones, kidneys, and lungs. I took pred. for 5 years and haven't had to go on it again, yet, anyway. I think everyone is different with this disease and how long it takes to go into remission. My kidneys are 40% and if I don't feel sick, I am okay. They were once 8% and cortisone did that for me. My lungs are pretty good, bones ache sometimes but I expect to live a good long life yet!! I watch what I eat, exercise and keep busy, volunteer work is very rewarding. I also worked for years, now retired.
Maurine

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Hi Guys,
My view is we need to know and my own belief is maybe a bit more gloomy for the others too, of which i was dx`d as one.
My sarc 30 yrs ago was dx`d as mild(arithema nodosum,burn out), reduced quality of life since with small flares getting worse over the last 8 yrs until 1 yr ago it was everywhere. My Aunt, mom, sis all had a milder form than me withinn a few yrs of me and its back with them all. I believe even the milder forms come back and will turn systemic given time, its a slow acting disease(thank god) and needs to be looked at on a 20/30yr plus time frame.
Now consider the term "remission" (this needs revisited/re-evaluated esp by the med profession) in my view and borne out by this site, it doesnt go away, in fact i believe it spreads under the radar - to use a term. Look at the number of people dx`d with remission who are still suffering and those who relapse after these so called remissions who in the vast majority present with sarc infecting more body systems than before.
i am not trying to be a doom and gloom merchant ( i do still believe it can be beaten!!), we do need the truth otherwise how are we going to achieve progression in awareness/research and ultimately a cure.
z

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Dave,

I also agree with you.. I would rather have cancer than Sarcoidosis. At least there is a means to an end with cancer. Either the treatment works or it doesn't and you die. My sister died from Lymphoma. She lived 18 months after her diagnosis. I have been suffering with Sarc for almost 2 years now and things are not any better than they were before. I have recently been diagnosed with Asthma also. I think they tell you you have asthma when they have no idea what is going on. Anyway, I am down to 2 mg of prednisone and am going to get off of it and never go back on unless it is a life and death situation. I hate the drug, but love the way it takes my pain away. Anyway, have a great evening.

Debbie

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Knowing your life expectancy can make you very confused. I'm 21 and I was diagnosed with sarc at 19 though I had it for at least a year beforehand. Finding out that there's a higher possibility that I could die in my 40's sometimes gives me focus and the determination to enjoy whatever I have left but at the same time there are days when that possibility just gets you down. The doctor decided to tell me this on my 20th birthday, worst birthday ever!

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AnKe,
Dont worry too much, i was dx`d at 20 and am here 30yrs down the line, now i reckon i had the "biggie" relapse start a year ago (the one we are skirting around here) tried something different and im not only holding my own but am already getting resolution to even some of my life long probs. I dont know if this is the answer and i still have flares esp as i progress through the meds, but i firmly believe i was in the checkout que, maybe it will still get me, but im fighting it again and making good headway atm.
z

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Hi Pearlsnowflake,

My second GP's father had sarcoidosis. He was diagnosed in his thirties but lived until he was 93. He was in remission for most of his life, but the sarcoid did finish him off. I think you can be both positive and realistic at the same time. If you deny sarcoid is a fatal disease, it also means that the medical profession, government and public only see it as a nuisance disease and one not to take too much notice of.

Pris.

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I'm almost 52 and have lost 1/3rd of my lung function to my old pal sark. Stage IV; pulmo says five years for me tops. That was a year and a half ago. I'm in remission now. His number means nothing to me. OTOH, I'm not afraid to die. After spending my working life as an ICU RN, I know that there are things worse than death. I'm content and living life one day at time. I can't run a marathon, but I can watch and cheer.

Peace,
jon

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That was very important info, but honestly speaking every person has THEIR time! There is no getting around it, cause EVEN if we didn't have sarc no matter what we all would still have to TRAVEL ova to the other side regardless! GOD know all our TIMES! Therefor god forbid one of us passes it'll just be our time. And I feel the medicine is only helpin the symptoms yes, but we are all here because of GOD to be able to acutally exchange our stories and to educate eachother. Im a just put it short the emdicine isn't keepin us alive the "Almighty" is. Thanx and God Bless!

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z11, the National Institute of Health saw how doctors were telling people sarc will 'just go away'. This idea is common on even some high profile medical websites today. The NIH, in studying the scientific literature, couldn't find a single documented report of sarc going away. Now if they could just get doctors and websites to stop saying it does...

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I am 75 and was diagnosed with chronic sarc 20 years ago. Have had to take pred all that time other wise I would have gone blind. Still go to the gym 3 times a week and can manage 50 lengths of the pool. Hope I have a few more years left yet. Stay positive and banish morbid thoughts.

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harvey,
Way to go on being evidence folks do grow old with sarc and still have a good quality of life!

I'm curious ... at what dose have you been on pred for 20yrs?

Did you have any breaks, changes in dose level?


thanks
harmles2

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Harmles2, this subject is indeed sobering but, in some way, there are too many assumptions in the stats. If 75% of chronic sarc patients die from it by age 60, that still means 25% live beyond age 60. And who's to say that newer treatments (usually for other conditions) won't improve life expectancy in the near future? Plus, there's the assumption that sarc will be what kills a chronic sarkie. You could get hit by a bus. You could get swept away in a flood. You could have a heart attack. Or you could be lying down in bed and have a massive blood clot from your leg break into multiple pieces and go into both lungs. Yeah. That last one happened to me. Thankfully, it wasn't fatal. I was rushed to the hospital on May 2nd. I was in the hospital until May 10th. My rheumatologist and I had both assumed the lung problems I was having were exclusively due to sarc. The most likely culprit was hormonal meds combined with relative immobility. (Oh! I also have diabetes now--steroids.)

The reason I'm posting this is I had been focused on death prior to being hospitalized. I'd told one friend I'd be surprised if I made it to 50. Less than an hour before my dad called 911, I'd told my mom that if they (the doctors) didn't work this (sarc) out, I felt like I was going to die soon. Less than a week before, I'd even thought about where I want to be buried. And what I learned is that I'm not going anywhere until God says it's my time.

It's only by the grace of God that I'm still here. I'm thankful and am looking at every day since May 2, 2010 as a bonus. While I was in the hospital, I saw some of the news coverage of the flooding in Nashville. I realized that God spared my life at the same time that others had died so tragically. I'm praying for peace for their families. I'm not sure what His plan is for me but I know He has one. I thought that God had abandoned me years ago, but He made His presence known and I now know that He's been here all along. As it is written, "his mercy endureth for ever."

So, while it might seem practical to know life expectancy statistics, please don't make assumptions about your expiration date. The One who knows it might surprise you.

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I too have chronic Sarc and I too am from SE Ohio and born in the 50's...interesting. I also know there was underground atomic testing in the Miamisurg area, (SE) Ohio in the 50's.
I moved from Ohio in 1982 to Florida. I never was healthy as a child and shortly after arriving in FL. I became mysteriously ill with thyroid nodules, extreme muscle and joint pain and a "Dead Fatigue." Finally I was diagnosed 20 years later with Sarcoidosis with a biopsy.

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