SARCOID IN THE NEWS - Sarcoidosis hits in midlife, has long-lasting effects

You know It's great this is in the news as often as it is. I'm actually quite surprised at how many recent articles I have been finding. This is is from my hometown newspaper, The Star Ledger, Newark, NJ edition. I believe it's from a doctor in Hackensack University Medical Center. A Dr. R. Knight Steel. It's the only name on the article so I guess it's his.

Sarcoidosis hits in midlife, has long-lasting effects
Tuesday, October 28, 2008
MANY CHRONIC CONDITIONS begin in midlife or shortly before, and impact an individual's well being to a varying degree for half a century. One such condition is sarcoidosis, which often makes its initial appearance around age 40.

A person with this condition may experience a single chronic symptom, often shortness of breath, which compels that individual to seek medical attention. Other people become aware of enlarged nodes, often mildly tender, in the neck or under the arms. Still others discover little red bumps often on the shins or red spots frequently on the face. Difficulty with vision, an irregular heart beat, painful joints, an enlargement of the salivary glands under the cheeks, abdominal pain or just a sense of fatigue also may be occur.

An individual may experience different symptoms at different times in life. The symptoms may even be so mild that the person does not seek out medical attention and is not even aware of the fact that he has the disease.

Most people with sarcoidosis have an abnormal chest X-ray. Quite often, the serum level of calcium is elevated and there may be an abnormality of one of the tests of liver function. Because the lung often is the major site of involvement, a lung biopsy or a lung washing by means of a bronchoscopic examination may be needed to make the diagnosis. At other times, a biopsy of a lymph node or another organ may be utilized to confirm the diagnosis.

Although the cause of this disease is unknown, there is evidence that an abnormal immunological response to some allergen is responsible. This produces little lumps, known as granulomas, that initially are visible only under the microscope, but which may become large enough at a later time to be felt or seen.

A corticosteroid, prednisone, is the usual treatment. It often is prescribed intermittently and in varying dosages. Elders who have had sarcoidosis for years or decades may experience a flare-up in one or more organs, especially the lungs, that requires treatment with this drug. Other drugs may be used especially if the individual has significant side effects from the prednisone or the disease is particularly active.

Sometimes, an entirely new symptom will make its appearance late in life, reflecting the involvement of a different organ with sarcoidosis. For example, some elders may have an acute visual problem that requires an assessment by an ophthalmologist and treatment targeted to disease in the eyes. Other elders with this condition may need urgent attention because the disease has involved the central or peripheral nervous system.

Elders who have one or more chronic diseases always should notify every medical specialist visited for any reason about these conditions. Especially when the chronic condition, such as sarcoidosis, has so many very different symptoms, every physician will want to consider it when trying to diagnose and treat a new medical problem.

Write to Dr. R. Knight Steel at Hackensack University Medical Center, 30 Prospect Ave., Hackensack, N.J. 07601.

SARCOID IN THE NEWS - Real Heart Burn

"MIAMI -- When a south Florida woman was stricken with the same condition that killed comedian Bernie Mac, a special kind of heart "burn" ended up saving her life."

Wow, straight and to the point! Interesting article though because most articles I find are about the lungs this one is about, can you guess? Your right, the heart.

Real Heart Burn

SARCOID IN THE NEWS - HABC hit with mold verdict

The Daily record in Baltimore City, Maryland reported that mold will make your sarcoidosis worst. I think it's safe to say that mold is bad and will probably damage healthy people's lungs. The only thing this article is good for is the mention of the disease itself.

"The Housing Authority of Baltimore City must pay more than $300,000 to a former tenant whose lung condition was made worse by the presence of hazardous mold in her home.

A jury in Baltimore City Circuit Court deliberated for three hours Monday before awarding Nornita Hyman $3,384 in rental expenses and $300,000 for pain and suffering.

Hyman, 48, lived in the Mount Winans community in South Baltimore between 1999 and May 2006. Mold exacerbated her sarcoidosis, requiring five hospital stays between 2004 and April 2006, said her lawyer, Scott E. Nevin of the Law Offices of Peter T. Nicholl. She moved out at the recommendation of a consulting pulmonologist, who diagnosed her with hypersensitivity pneumonitis, Nevin said."

HABC hit with mold verdict

Sarcoidosis in Vermont

Here is another story that shows possible links between sarcoidosis, breathing in contaminated areas possibly asbestos or other dusts.  

"For a period of seven months, state employees were required to work under conditions which were recognized as unhealthy," Costello said. "The present condition of this building is a consequence of the failure of this administration to maintain its infrastructure."

"State workers are now housed in modular offices on the grounds of the complex. They were moved out of the office building after six workers were diagnosed with the rare disease sarcoidosis, and many more complained of respiratory ailments."

It's amazing how we send people to work under these conditions. Even though I already have sarcoidosis I still wear a mask when doing anything that might involve dust or breathing in hazardous chemicals. It should probably start at a young age I remember in 5th grade shop class we used to wear goggles for safety but we probably should have been wearing a dust mask as well. I'm not saying you get sarcoidosis from cutting wood although some scientists have tried to link southern pine trees as one cause for sarcoidosis but just as a precaution I mean why are we breathing in wood dust anyway. Cant be good. I got off topic didn't I? Well here is the article

Employees on attack over sick building

*UPDATE* stupid cough

I started to get this cheep cough like when you kind of skip cough. It's hard to explain but this used to happen to me last year where I would talk but cough would come out instead. My breathing is a little funky and I' m slightly out of breath. Nothing to get worried about yet but it's definitely the start of something. It's been 2 weeks and it's time to call the doctor again. I'm on 7.5 mgs of prednisone and weening. I think he wants to go to methotrexate next.

A public announcement

I wish there were more of these perhaps Bernie Mac could have done one. Maybe Karen Duffy could do one as well?

Thank you FSR for this one.

SARCOID IN THE NEWS - Healing fest helps Jackson woman battle illness

I just love it when sarcoidosis is mentioned in the media. I love it because it creates much needed awareness to a disease that is not so rare. 

from Jackson Mississippi WLBT3 news reports 10/12/08

Healing fest helps Jackson woman battle illness

Another 9/11 connection

There has to be a real connection between sarcoidosis and what was in the air after the 9/11 attacks. We know that there was a spike in sarcoids cases in the area after the attacks. We know that there was asbestos, lead, glass, cement and who knows what else. My infatuation  with this lies in the hope that researchers will get a better understanding of this disease. 

Here is a really interesting article on the BBC web

Dust victim is added to 9/11 toll

Life is not all Sarcoids

With the blog and the other support forums, all the doctor appointments the pills and side effects. One might think that sarcoids consumes my life. I was thinking about it this morning with sun and my face and all. Sarcoids for me is just a reminder that life cannot be wasted. Everytime I feel good enough to mow the lawn or something like that I take solace in the fact that I'm healthy enough to do it because just a few years ago I didn't see myself doing anything really. I was about to sell my kayak because I thought I was never going to have the energy to use it again. Well here I am and there is sarc, a great reminder of not to take anything for granted including my lungs. Now if I could only control my mood swings while on these pills!

Weight gain on prednisone

I was on prednisone for approximately 18 months and in that time I gained 35 lbs. I kept a low fat and low salt diet. I figured the salt would help me retain less water and the low fat well, you know. I got those ideas from a book called "coping with prednisone"  by Eugenia Zukerman  and, Julie R. Ingelfinger. 

My wife brought home a pedometer that was a promotional item where she works and it involved the show, the biggest loser. So I read the info and said, "what the hey" It said if you walked the recommended 10k steps a day it was the equivalent of going to the gym for 30min, 3 times a week. That's pretty good for just walking. Here's the best part for me. I do over 10k on a regular work day because my job has me walking around a lot. So now by setting myself a goal of 15k It might just do me good huh? I also got some jump ropes and that idea i attribute to my brother Jorge I remember he used to stay in shape by doing boxer's style training. Which is why I asked my wife for a heavy bad, a pair of boxing gloves and a timer so I can go a few round in my garage. I figured this would not only be good exercise but a good stress reliever as well? I'll let you know how it all works out. One thing for sure it's hard to avoid weight gain but I think I was lucky I only gained 35. Now I just hope to lose it. As I post this I weight 248lbs, 5 pounds less than 2 weeks ago. 

ROID RAGE!

I know one of the side effects of prednisone is mood swings. I didn't really notice this in the first year I took it but now that I have been off of steroids for awhile and came back on it I notice my fuse is very short. I was at the doctor's office today waiting to get my flu show. My appointment is at 5:30 and it's 6:30 and they haven't called me yet. I know when I asked to be rescheduled I was being rude and I'm already not too fond of this receptionist from previous encounters. I get to my car and I wanted to rip the steering wheel off. I get home and I take it out on my wife by being asked to be alone. As I'm writing this my head literally feels hot along with my ears. I did not have this kind of reaction when I was off but looking back this kind of rage was pretty normal while I was taking prednisone last year. I don't know how my wife put up with it.

9/11 World Trade Center and the sarcoid connection

It it unbelievable how many people involved in the rescue and clean up efforts were diagnosed with sarcoidosis in the time after the 9/11 attacks in the WTC area.

This is a link of the PBA website that highlights all of the people that got sick working on the site. Look how many with sarcoidosis.

http://www.nycpba.org/wtc/registry.html

I called the PBA in NY and spoke with the person who compiled the list and yes the list is mostly police officers or detectives, there are some civilians on there and one firefighter. The Fire dept has their own list.

M doctor in works out of the Mt Sinai and he is the one that told me there was a spike in sarcoids cases as a result of world trade center rescue working the site. I thought it was interesting because this might support evidence that sarc may be environmental. Not to say it isn't passed in the genes or to debunk any other theory because there could be more than one.

Check out this link as well, I believe it was written by a sarcoid patient being treated by Dr. Teirstein

 So the good news is, you have sarcoidosis, Now what?

Mount Sinai Hospital New York

FYI...

If you have sarcoidosis and Live within the proximity GO HERE!

Mt Sinai Medical center is a teaching hospital that has a staff of pulmonary specialists with extensive sarcoidosis experience. Among them are Dr. Maria Padilla and Dr. Alvin Teirstein.

I am treated by the latter. The hospital has been considered for a long time now a research center for sarcoidosis in fact the Kveim-Siltzbach test was developed here by Dr. Louis siltzbach with research done by Dr. Morten Ansgar Kveim, a Norwegian dermatologist and It is the only test that, if positive, is considered to be true diagnostic of sarcoidosis. 

One thing I hear a lot of sarkos complain about is that their doctor is clueless and they get sent from one doc to the other resulting in wasted time and you still feel like crap. If you do not live in NY or close to here. Then here is a list of Sarcoidosis doctors and centers around the world

World Wide directory of Sarcoidosis experts

Prednisone, The wonder drug

Everyone reacts soooo differently to this drug so when one person says he or she feels this way someone else says yeah but I feel like that plus a little of this. The way this drug affects me is as followed:

I get fat, or at least my appetite opens up it's hard to control so I have to go on a diet while I'm on. I gained at least 35 lbs last year.

I got some acne (on my back)

I am usually full of energy but I can also get aggressive at times. Not like roid rage but just like me but more intense me, people who know me go ohhhh.  

Brain fog I'm not sure if this is the drug or the disease.

That's really it for me. I like most people enjoy having the extra energy or normal energy that is not achieved otherwise really. 

The other day I got rid of a bunch of "honey dos" that have been left half done for months. I like having this kind of energy. However it's a double edge sword because I could also end up with no bone mass one day. Next stop Methotrexate.

New Legislation for Autoimmune Diseases

Patrick Kennedy introduced H.R. 7078. A bill that would help bring much needed attention to funding research and awareness for auto immune diseases.

You would think with a war going on and the economy in shambles, not to mention it's an election year a bill like this would be over looked in congress. I hope that is not the case and I applaud Congressman Patrick Kennedy of Rhode Island for this and I will email my congress person about how important this bill is so he can support it as well. With proper funding we will get closer to the day that there will be standard testings for these diseases and the development of better treatment or perhaps even a cure. 

With that I leave you this article New Legislation for Autoimmune Disease Applauded

here is a directory of congress representative that you can email to express your concern for this bill CONGRESS

House

One of my favorite shows is House and I love the way sarcoidosis is mentioned repeatedly.

I also really like this picture I found on this website

http://itsnotlup.us/

house fans get it right?

Gilbert Barr

Me & Sarcoidosis A lifetime partnership by: Gilbert Barr Jr. written in 2002

The first of the few books I have every read about sarcoidosis was this one by Gilbert Barr. Depending on how you look at things you might either find this book really negative, depressing and downright horrible because of the things he went through. I think this book helped me cope with this disease better. He wrote this book from a patients perspective which includes insight to his medication doctor's visit, good and bad. He had sarcoidosis in multiple organs and aside from having to suffer from all the symptoms he had to suffer the ignorance and sometimes disrespectful health care workers or doctors he would encounter throughout his life. It's true though I consider myself very luck because for a couple of months I experience what it was like going to doctors that don't know enough about the disease that they don't even know what to do with you so they keep shifting you around from specialist to specialist. Gilbert not only suffers from sarcoidosis but also from diabetes insipidus. One thing Gilbert stresses in his book for sure is how important it is to have a standard test to confirm sarcoidosis or better ways of getting to the diagnosis faster as it takes some people years to find out what is wrong with them. I have a lot of respect for Gilbert because he let it all hang in this book he didn't hold back because he wanted to put himself out there for those of us to realize that we are not alone. One saying he lives by is "no matter how bad you have it, it could be worst!"

I was in his website http://www.gilbertbarrjr.com/ the other day and was saddened
to read that he is currently undergoing treatment for colon cancer that has spread to his liver. It's sad but fortunately this is not the way it is for most of us. remember, no matter how bad you have it, it could be worst.

R.I.P. Bernie Mac

I know it's older news but how can there be a blog about sarcoidosis and not a mention of one of the few famous people who have it. Or that we know of at least. When He first died I was angry because they kept saying he died of "pneumonia" and the media or his family kept emphasizing that is was not the sarc. We know that the death rate with sarc is really low. This disease doesn't kill us as much as it makes us feel like crap everyday. But had the pneumonia hit a 50 year old man as hard as it hit Bernie if he had not had complications in his lungs to begin with? I don't know because Bernie's life with sarcoidosis was downplayed and understandably so. What about Reggie White? He had sarc in his heart and lungs. The man died from cardiac arrhythmia and they think his sleep apnea may have cause it?
I'm not saying there is a conspiracy but perhaps such a lack of knowledge for sarcoidosis may be to blame.
I always looked up to Bernie Mac as someone who could reach high levels of success with sarcoidosis, so for that I say Thanks, Bernie!

This is a really great article written about Bernie after his death, Bernie Mac's death puts sarcoidosis in spotlight By Judith Graham | Chicago Tribune reporter

Book Review: Karen Duffy's "Model Patient"

Model Patient , My Life As an Incurable Wise-Ass

Karen Duffy suffers from Neuro Sarcoidosis, it involves her brain and central nervous system. She tells her life's story and she does it while laughing at herself and in the face of this disease. She is upbeat has a great attitude and a great sense of humor. I really liked this book because it made me realize that we can't be serious all the time it's just not good for us. She really is an inspiration because she is juggling from job to job, while dealing with this disease which I have to say, her condition was beyond what I could have ever imagined. In other words I got it good compared to her. Even if you don't have SARC I recommend this book because the book is not all about SARC. It's about putting yourself in a position that no matter what you won't feel sorry for yourself and at the same time be able to accept help from other's.

Great book I hope she writes more.

My Story...

My name is David I'm 31 and I moved to Teaneck, New Jersey from Miami in the spring of 2006. I was under enormous stress from the move and I wonder if that stress is what caused or triggered me getting sick? I got a head flu the 2nd week I got here then it came back stronger, I wasn't eating had fevers of 104. I saw a family Doctor who told me it was pneumonia and sent me on my way with antibiotics. I thought I was fine but 3 weeks later I got sick again, all this time I was losing weight and having unexplained fevers throwing up mucus and by now a pain in my abdomen on the left side had developed which my family doctor told me was "water in my lungs" never mind no x-ray was taken yet. I didn't have insurance but I had just started a new job that would provide it within 90 days.
That’s when I saw a real Doctor who checked EVERYTHING! She thought I was on drugs, cocaine particularly because I came in with irregular heartbeat, bloody mucus and fever. All the symptoms pointed towards lymphoma so I was sent to go see an oncologist. The oncologist ran plenty of tests, which included bone marrow biopsy that came back negative for cancer. However we did not have explanations for what has been going on with me. I was 310 lbs and I was losing weight at an alarming speed. Cat scans revealed that the pain in abdomen was an enlarged spleen (no really it weight 9.5lbs) which seemed not to be receiving enough blood. By this time I had lost 90lbs I couldn't breathe, I thought I was going to have a heart attack going up a few flights of stairs. Fatigue was my biggest complain though. There were days I couldn't even walk one to two steps without being out of breath. After consulting a few surgeons/ a cancer specialist surgeon decided to remove it. After the splenectomy they performed a biopsy on the spleen, they found masses of granulomas. (No Cancer!)

I went to see a rheumatologist who suggested we take the "wait and see" approach. Now here I am looking on the Internet and stats are showing like 90% of people with sarcoidosis have it in their lungs! No one even bothered to check mine even though one of my first symptoms was that I was out of breath. Needless to say I did not go back to that doctor. I found a doctor in New York's Mt Sinai Medical center that has a team of Pulmonologist that specialize in sarcoidosis! HA! So...

I was prescribed prednisone for about 18 months, this worked and put the sarc down but the minute I tried weaning off that sucker came back. I had also gained about 35 lbs back with the steroids and don't even mention the mood swings to my wife. Throughout the steroid treatment I had flared up more times than they raised taxes in Jersey. I was put on a drug called hydroxychloroquine generally known as plaquenil. This is an old drug used to treat or prevent malaria. The way it works for auto immune disease is not fully known but what is known is that it helps with inflammation and people taking it for malaria that had rheumatoid conditions started to realize that the drug improved their arthritis. The doctor said last week that this drug wasn't working so we are looking at other options. The Doctor put me back on the prednisone to get rid of the symptoms I currently have, which includes gigantic lymph nodes exploding at both sides of my face. Oh that's another thing the last 2 years I have had lymph node biopsies to rule out the C word. I just had a needle biopsy on the face a couple of weeks ago. So next week the doctor will tell me if I have to go on methotrexate. That is a drug used for the treatment of cancer but it will be given to me in low dosage.

I'm probably missing a lot of what happened on here like when I had to take a bunch of really strong pain meds for some crazy looking skin ulcer (I have pictures) on my tailbone. As a result of being in the same position for too long in the hospital bed after the splenectomy. These were the pills I was prescribed after the surgery, which didn't hurt as much as that ulcer. Or maybe the ulcer took my mind off of the surgery pain? Whatever, Now these pills had backed up my digestive system for almost a week I thought I was going to pull an "Elvis" one day in the bathroom.

This is my story I wish it wasn't but it's mine and that's ok. I gotta say some good things did come of this and I think it gave me some sort of push I guess to try and be better. It brought my family together as well. I know I loved having my mom fly up from Miami and "take care of me" after the surgery while my wife was at work. I got visits all 5 days I was in the hospital. I used to stay up just me and my morphine drip watching three's company and good times. Good times was sooo depressing though.

I'll update next week if I go on the methotrexate for now the steroids are working in getting my head in normal proportions. For now it's just me and my stage 4 sarcoidosis!

But you don't look sick...

Don't you hate it when people tell you that?

Why Blog about sarcoidosis

This blog can be used as a platform for ranting, crying, laughing at yourself or me for that matter. Pretty much whatever you want. If you have sarcoidosis or knows someone maybe even is a caretaker your welcomed to read, comment and share on this blog. Most of my friends and associates know about my disease but since "I don't look sick" it goes unnoticed and yet it's a big part of your life. It's like a tree is growing out of your head and only you can see it. Sometimes I actually feel like a tree but it goes unnoticed. In some ways it's good because I get less questions and people at work wont assume I can't get something done. However it's downside is that no one really knows what you go through but another sarcko. So this is why this blog is called sarcoidosis United. One thing for sure is that there is no feeling sorry for yourself here. I'm not exactly proud of my disease and believe me I wish I weren't sick but this has certainly changed me in ways I wouldn't even have imagined. I don't take as many things for granted like I used to. I don't sweat the small stuff as much as I used to. Ok if my wife reads this she'll call me out, but no, for real. So far I feel really lucky what can I say. Well I can say I like hanging out with other sarcko's because you folks know how I feel.

What is Sarcoidosis

 Sarcoidosis is a not so rare autoimmune disease that can affect any soft tissue in your body. It's a disease that can affect multiple organs such as lungs, lymph nodes, heart, eyes, spleen, the brain and even the skin. There is also neurosarcoidosis which affects brain and the central nervous system. Sarcoidosis consists of inflammation that forms of tiny lumps in your organs called granuloma. These bind together to create a region of granulomas that can affect the way the organ works or just render it useless. About 90% of cases have lung involvement. A hospital in NYC states that 80% of Sarcoidosis cases require no treatment and it may go away in 6 months to 2 years. About 40-60% of patients Sarcoidosis goes away without any treatment in fact a lot of people may get it without knowing and not report it so this number may even be higher. About 20-30% of patients are treated and it goes away. The other 20 or 30% are chronic cases. Sarcoidosis is rarely fatal. Some of the symptoms can include, fever, night sweats, cough, shortness of breath, fatigue (that’s a big one) and joint pain.
All in all, sarcoidosis is no fun but a good portion of people affected can lead a normal life. Research and development for this disease has made advancements in recent years and there are clinical trials taking place that offer hope. Corticosteroid, are the most common medicine prescribed for sarcoidosis the most popular being prednisone. Prednisone is designed to suppress your immune system so that is doesn’t overreact hence auto immune, and help with inflammation. There are other drugs as well such as hydroxycloroquine and methotrexate and others.
There is really no way to predict the outcome for each individual I can say is that the best way to deal with it is to find out everything you can about sarcoidosis and your condition so that you can then ask the right questions and advocate your own health. Oh and a really good doctor doesn’t hurt either.