How long have you had sarcoid?

I was wondering how long you all have been diagnosed with sarcoid.

I also wondered whether you were expected to get better within two years of diagnosis.

Doctors seem to assume that their sarcoid patients will be free of the disease within two years. Most text books tell them that 70% of sarcoid patients will go into permanent remission within 6 months to two years. The ACCESS study on sarcoid says that the average length of the illness can be as long as 9 years.

I was diagnosed with sarcoid in 1999. I was told I would be free of the disease within two years. I was in an immunologists care for 3-4 years prior to the diagnosis because I was unwell, and had constantly raised inflammatory markers. So I would consider I had the disease at least that length of time prior to diagnosis. I was later told by my doctor that I would be in remission within two years.
While my symptoms did not seem to get any better, the hilar lymphadenopathy in my chest did resolve on the mark of two years. My symptoms continued to worsen despite this good news until in 2003 it was finally accepted that the sarcoidosis had returned and I was put on prednisone. Things settled for a short time, until my symptoms returned in February 2006 and it was confirmed in the September of 2006 that the chest pathology had recurred and worsened. Despite treatment my ACE is now double the normal range.
I was wondering how others fared with timeframes of illness and whether the two year theory had any baring on how they were treated. I have always found this "sarcoid is a two year disease" thing a barrier to being taken seriously by doctors.
What has been your experience?

Pris

By dt1966
Posted August 7, 2008 at 4:41 am
Report post

I was diagnosed in 1994 and never had any problems until this past March. I had never heard of it being a 2 year disease or anything about it being a permanent remission ever? It would be nice if that were true though.

By Cheesypops
Posted August 7, 2008 at 9:34 am
Report post

Started coughing like a MOFO just in 2007Sept. Cough has waxed and wained, in a "quiet" stage now.

As far as the Pulmonary issues. Yeah I would hope they "go away" for good soon. But dont really know. I always seemed susceptible to chest colds, pnuem. in the past so hard for me to be sure. I did and have continued to stave of the Cigs for over 2.5years...but still enjoy recreational smoking.....its natural....lol

I doubt I will ever get over the Neuro symptoms. Sarc or MS.....dont matter the dx. Its been over 3yrs an as I type this I fully believe that whatever loss I have nerve wise...is permanent.

By singernomore
Posted August 7, 2008 at 9:57 am
Report post

started in 2001, dx in about 2005, and don't expect to ever be free of the symptoms, but i get along fairly well currently, with the help of prescriptions - "better living through modern science"!

By micheleb
Posted August 7, 2008 at 11:41 am
Report post

I was very ill for almost 4 years before my proper dx through lung biopsy last fall. I am on remicade infusions and improving but have my doubts that I will ever be symptom free.

I have read that 2 year theory many times and it seems for the people luckily enough to have very mild to no symptoms, that their sarc does just sort of go away but I think the longer you have had it continuously the less likely you are to obtain the magical remission. Just my theory though!

By arpear
Posted August 7, 2008 at 4:41 pm
Report post

I was first diagnosed in 1987. I have never been in total remission. Mosy of my involvement is on my skin, however I do have some lung involvement. I've just learned to live with it. My biggest problem is I just get tired of being tired!!

By Pat-y
Posted August 7, 2008 at 9:23 pm
Report post

I was dx 8 years ago. Didn't realize I was sick, I had just gotten used to the fatigue ect... Assumed every mother of two young children, going to college full to part-time felt the same way. I was told after they removed my spleen that I was in remission but they were wrong. Listen to your body, you'll know. Once they get the disease under control with the meds. you can live a normal life.

By jkr2
Posted August 7, 2008 at 10:41 pm
Report post

i was diagnosed 9 months ago,[ pulmanary sarc,] i ve never heard of it going away after 2 years, sooner would be nice, i have goodnbad days, fatigue is terrible, but you have to keep moving on. currently i am working at 11,000 ft. above sea level and when i get home and i can still breath it gives me a huge feeling of accomplishment, and some days i wish everything would just stop because i feel like i cant take anymore. but i keep moving on. dont ever stop!

By Two_Labs
Posted August 7, 2008 at 11:12 pm
Report post

Old wives tail that keeps getting spread over the internet and by outdated medical journals.
I think folks with minor symptoms just get tired of going to the doctor after two years and just say screw it and deal with it on their own. I pulled all of my medical records today (in the military) since 2000. Though I was diagnosed in Apr 07, I have doctor visits for onesy-twosy symptoms since 2002 that I now know are sarc. At the time they just looked at them individually because it would take a lot to get me into the doc and you tend to just focus on one issue. What made the disease go haywire in Apr of 2007 and continue to get worse? I have no idea. There is no thing as remission just 'good days'.

By priscurl
Posted August 8, 2008 at 1:00 am
Report post

Hi Cheesypops,

I guess you are one who is an exception to the rule that smokers don't get sarc.

I was never chesty. I didn't get a bout a bronchitis until a year or two before sarc was diagnosed. However, I did have problems at work once where I was working with ether and coughing up blood. On the challenge test for asthma they told me my airways closed down 15% which was not asthma, but neither was it normal. Normal was up to 5% closure. I believe about 30% of people who have or go on to get sarcoid have some airway closure on this test. This was about 15 years before I was diagnosed with sarc.

I guess if you have damage done by sarcoid it remains even if you go into remission later.

Pris

Pris

By priscurl
Posted August 8, 2008 at 1:04 am
Report post

High MicheleB,

How are the infusions going? Do you think they are helping. I reckon if you have been ill for several years before diagnosis, especially if there were definite signs of a problem, like raised sed rates, as you say, if it was going to go away in two years, you wouldn't have got to the fourth year to be diagnosed.

Pris

By priscurl
Posted August 8, 2008 at 1:07 am
Report post

Wow arpear, you've sure had it a long time. Sorry you have skin involvement. You say you still get tired and fatigued. There's got to be more to it than just skin. I have read those who get skin involvement often have a chronic course with the disease. I guess you have to get on the best way you can. You can live with it, even though it can be hard, difficult and trying. The things that bring joy, still do so.
That cannot be taken away.

Pris

By priscurl
Posted August 8, 2008 at 1:15 am
Report post

hi Pat-y

I'm not surprised you thought the fatigue was normal with all you had to do. I was also at university when I was diagnosed. I was not too bad in first year, but in second year the fatigue and pain ramped up a couple of levels. I couldn't keep pace with people I was walking with. Midway through the year I was admitted to hospital with pleuritis. I wasn't diagnosed till my final year at uni. By then stairs just about killed me and getting across campus meant a rest about every twenty paces. By then it was 'hardly' normal. I know my body pretty well. Today is a bad day for me. I am in pain and the fatigue is killing. ACE is double normal range. Dr thinks I'm stable, (what, with a climbing ACE; when sitting, standing, walking, getting in/out of cars and dressing are things to dread because of the pain attached to these activities?

Pris

By priscurl
Posted August 8, 2008 at 1:19 am
Report post

Hi Two Labs,

Sounds like you have done some reading up on this problem. I was always fairly sure all my symptoms were connected. Most started around the same time and all have gradually gotten worse. It also sounds as if you have developed a degree of cynicism regarding the medical profession. Me too!

Pris

By Shania
Posted August 8, 2008 at 1:36 am
Report post

My brother was diagnosed 4 years ago, he was immediately put onto steroids, after a while his health improved. About 4 months ago he woke up with blurry vision in one eye, he had sarcoidosis in one of his eyes, they cleared that now he has the nigling cough again. He went for tests yeasterday, will have results next week.

By priscurl
Posted August 8, 2008 at 1:58 am
Report post

Hi Shania,

Hope things are taken in hand with your brother.

I was refused sarcoid for several years. I found the first time I went on it, it helped magically. Since then it has been all down hill. I think pulsed prednisone works better than daily prednisone, but all prednisone is the pits.

Pris

By singernomore
Posted August 8, 2008 at 8:52 am
Report post

hi pris - my two years is way up! two reasons i don't expect to be free of symptoms:
1. lung damage appears to be the permanent sort, per ct. vulnerable, too - never had pneumonia prior to this illness, but now seem to have problems with every uri. fortunately, don't have as many of those as when i was younger.

2. now 7 years of symptoms - and if i am late w/ my meds, symptoms return, so they're not gone. seems overly optimistic to think they will ever go away. some are much better - only mild facial numbness instead of feeling like i had just had dental work - but never completely gone.

By becci
Posted August 8, 2008 at 9:24 am
Report post

Hi i have had sarcoid for 34yrs I am in a wheelchair have lost sight in one eyes my lungs are so bad I find it hard to breath I have it in my joints all this because of sarcoid keep smiling

By stewarcl
Posted August 8, 2008 at 4:56 pm
Report post

My husband was diagnosed in 2002/2003 and has never been in remission. He has sarcoid in the lungs, mediastinum (sp?), skin, thyroid (and a maybe arm and neuro). He has severe pain every day. He gets sick at the drop of the hat. While his lesions seem to come and go, the symptoms do not. I believe the doctors say it goes into remission because they do not know enough about Sarc. My husband just got out of ICU because he had respiratory failure. While he is breathing again, he is now on oxygen, but he was told his lungs looked much better and clearer -- so does it ever go into remission? I will believe it when I see it. We have had an endocrinologist tell us "the individuals who have multi-area sarcoid seem to be the sickest" - well that would account for my husband always feeling sick! I sure wish we could get the attention of the government or ? to to put more $ into research for sarcoid! I pray you can all have some sort of relief from this nasty disease!

177 replies

Add to the discussion

Search

Join

Connect

You