Is anyone familiar with Sarcoidosis

[DesignerS]

Hi everyone!

At my Rheum. visit today, the doctor was feeling my lymph glands in my neck and under my chin.  He was very concerned and said that something is not "right."  And due to the dry cough he is concerned about Sarcoidosis.  Never heard of it, just what I read when I came home. 
I had to get some more blood work done and he also wants a chest xray.  Is anyone familiar with this disease?  Thanks.

Designer

[Scottietottie]

Hi Designer   

I'm not very familiar with sarcoidosis but I know a woman who is and I'm sure she'll be along soon!

Take care - Scottie 

[Linda196]

I'm not sure, but I think Scottie may mean me 

I was diagnosed with Sarcoidosis in 1979, after starting to have various symptoms 2 months earlier. I've never had any lung involvement, which is unusual, only about 15% of total cases, from what I understand. My symptoms involve joint swelling and pain, granuloma deposits in just about all organs and tissues except lungs, fevers, rashes, fatigue, swelling of various lymph nodes from groin to underarm to neck, and possibly a few things I've forgotten about. After a false start and a diagnosis of lymphoma, I was diagnosed based on a lymph node biopsy.

There are no specific blood tests for Sarc, but in some people the ACE (angiotension converting enzyme) level is increased, and if that does happen, it can be used to track the effect of your treatment. A normal ACE level does not mean you don't have it. Chest x-rays can be very distinctive, with what looks like a string of pearls in the central part of the chest...if there is granuloma deposit in that area.

Sarc is often called an autoimmune disease, but it's slightly different, more of an immune response disease, because it happens when the immune system reacts appropriately to some infecting agent but fails to turn off when the infection is gone. AIs like SjS are the result of an innappropriate response of the immune system to normal tissue.

There are three main types of Sarc: type 1 is self limiting and usually burns out in 18 months to 2 years; type 2 is chronic, causing ongoing low grade problems with occasional flares; type 3 is remitting, it seems to go away, then recurs full strength every so often. The severity of Sarc depends on the tissue it effects...obviously infiltrates in the brain, heart and lungs can cause more serious problems than infiltrates in the skin. A gallium scan can highlight areas of inflammation anywhere in the body, and show the doctor if there is any concern for cardiac, lung or brain involvement.

Initial treatment is usually steroids, but my doctors were very understanding and willing to work with me to treat symptoms only to see if I had the self limiting form, without having to take steroids for what might have been a temporary problem. When it became apparent that mine wasn't going away, I had been functioning fairly well without the steroids anyway, so I didn't start them, at least until I was diagnosed with SjS, at which time they became necessary.

This is probably way too much information to start with, but if you get a positive answer from your doctor, it may give you someplace to start, so you'll know what you want to ask him. If the tests turn out OK, you can just file it

[DesignerS]

Hi Linda,
Thank you for answering my question, and so quickly.    I finally got my head wrapped around the SJS, so now I will at least have some idea about the Sarc.  Thanks so much.  I am assuming that you haven't had debilitating problems from the Sarc.     I hope not at least. 
Well, I will get my chest xray done tomorrow and wait to find out. 
Thanks again,
Designer

[Seeker]

Hi Designer, several years ago I had a growth appear under my left eye.  It grew to about the size of a almond before I had it looked at.  The doctor removed it and had it tested.  The growth tested positive for Sarcoidosis.  Since then I have had no problem with Sacoidosis.  What my doctor told me was that it is considered an auto immune disease.  It can affect the lungs and other organs.  It can also, as in my case, appear as an isolated incident.  Like SjS they have no idea what causes it, or how to cure it.  Also like SjS it varies in severity from person to person.  It can also go into total remission and not ever appear again.  Anyway I hope you start feeling better soon.

Seeker

[genko_b]

Hi Designer:

These conditions do seem to come in batches, don't they? Just when you settle in with one diagnosis you run up against another.

As Linda and Seeker said, there are several different ways sarc can play out, just like Sjogren's. With Sjogren's you may never get beyond dry eyes and mouth, or you may get a full range of involvements.

My brother had sarcoidosis for most of his adult life, the severe progressive kind, which is less common. Virtually every organ was involved, especially his lungs and liver, and unfortunately it eventually caused his death. it is fairly rare for this to happen, though. My personal opinion is that he did not get it treated aggressively enough, but siblings often argue about these sorts of things.

A lot of his symptoms were similar to what I have experienced with Sjogren's, and I can imagine it would be difficult to sort it all out and see what medication was most effective on what. Plaquenil, prednisone, and methotrexate are all begin used for sarc now, so treatment could cover both bases.

Please let us know what you find out. Sarc can be treated very effectively. Like any of the autoimmune or immune-response diseases, it requires patience and a good, long-term relationship with your doctor.

Take care - we are thinking of you.

Genko

[Linda196]

I forgot to mention that some schools of thought consider Sarc an exclusion criteria for SjS. In other words, if you have Sarc, your eye and mouth symptoms , as well as all the common symptoms of joint pain and fatigue, are supposedly caused by the sarc, not SjS.

My doctor asked for a lip biopsy to determine if the same granulomas were present in the minor salivary glands as were identified in the lymph nodes as Sarc. The result showed clumping of lymphocytes, not specifically granulocytes, so he was quite confident in saying that my newer symptoms were definitely caused by SjS, not Sarc.

As Genko mentioned, Sarc symptoms can be very serious, even devastating, and I feel it's important to be aware of those possibilities, but I don't dwell on them. I am checked every two years for any new cardiac involvement, and yearly for new developments in other organs.
In that way, I'm aware of any new symptoms that may be caused by Sarc, and I can deal with it early, instead of wondering.

[DesignerS]

Seeker, Genko, and Linda,

Thank you for your input, I appreciate it. 
So it sounds a lot like SJs in that it can go from 0 to 10 and anywhere in between.    I definitely agree that I do not want to dwell on what could be but may never happen.  And yes, you just get settled with one disease and they throw out the possibility of another.  I guess I will go back to my old way of thinking, one day at a time, and each day is precious. 
Please just let me say something here.  This is not a complaint, this lady is the blessing of my life.  My oldest daughter, now 30, was born with many health issues, birth defects, etc.  The most critical and hardest for her is her inability to swallow.  She has never had a taste of even water.  She has a feeding tube and a tracheostomy tube for breathing.  She is one tough gal.  My right hand buddy.  I say all of that to say that now I am trying to tell HER that I cannot taste food anymore and do not enjoy eating.  Ironic huh?  However, she surely keeps things in perspective for me.  I cannot taste, she needs a tube.  So, no complaining here! 
Designer

[Billydude]

A friend of mine just mentioned he had Sarcoidosis.  Not knowing what it is I looked it up and I'm starting to wonder if I didn't get a mis-diagnosis of SJS.   There were more things that apply to me with Sarcoidosis than Sjs.  I don't really have dry eyes and mouth.  I do have swollen parotid glands which happens with Sarcoidosis along with a contant dry cough.  Nearly every chest x-ray I have they always say they see something abnormal but then never really tell me what was abnormal.  I get dry lumps on my scalp,  I've had Bells Palsy,  night sweats,  fatique,  central nervous system problems.  All seem to apply.   Am I overreacting?   Well....I guess its 6 of one half dozen of the other.  Autoimmune is autoimmune but with a different label,  right?
Steve

[irish]

Steve, Mention this to one or all of your docs and see what they can come up with in the forms of diagnostic testing. Also, the lungs are involved with sjogrens a lot of the times and a dry cough can occur. Also, one doesn't need to have dry eyes or mouth. My dry eyes were the last symptom that I got after decades of other symptoms. It is tough to get all this stuff sorted out and drives us all crazy!!!!! Irish

[allium]

Hi Steve:

I noticed your symptoms as being similar to mine when I came to this forum; the cranial neuropathies, CNS, swollen sore parotids, and later facial palsy (wasn't the whole side of my face, so I can't say it was Bell's).  I remember that you didn't have a positive blood or conclusive lip biopsy.  My eyes and mouth are being affected though, as is my hearing.

I had a gallium scan that showed a inflammed rt parotid, but no other supposed areas in my body, although I have shortness of breath quite a bit.  A lung x-ray over a year ago showed nothing.  Most recently, a intense head and facial MRI showed no new lesions in my brain or head....   The doctor is now dismissive of me, saying I have "too many symptoms" to have something real. 

In the beginning, things seemed to go toward SjS or MS. Now, so many of my symptoms seem like sarcoidosis (or SjS, or another AI)  I am finding that this is a disease that even fewer doctors have knowledge or experience about than SjS.  It's very frustrating, because I know there is something wrong with me, but keep hitting a wall for a diagnosis.

I guess I'm trying to say that it wouldn't hurt to explore the sarcoidosis idea; have you had a head MRI?  Do some reading up and see if you can find a specialist for an evaluation.  I'm not having luck in my area, and am considering going to the Cleveland Clinic for help. 

I remember you said you were on Cellcept, and that was mentioned as a treatment for sarc with the steroids.   Hope we get some answers, good luck.

Sheila

[Billydude]

Sheila....what a thing that doctor said to you!   Too many symptons to have something real??   I would have punched him.  LOL
I did have a brain MRI prior to my SJS diagnosis when they suspected MS.   I'm just wondering about the Sarcoidosis as I have a lot of little things that match that.  Like Enlarged lymph nodes,  various bumps and bumps at my ankles which are apparently signs of Sarcoidosis   Enlarged liver and night sweats ....just so many things that match me that its worth asking about.   I did have a confirmed Sjogrens diagnosis from the UCSF study.  Nothing was off the charts but there were enough indicators that pointed to Sjogrens.  I had the lip biopsy and all.   So,  maybe I have both.  I don't know.  Guess it doesn't really matter.  I'm on the Cellcept anyway.
Steve