Stages of Sarcoidosis

Hi Family,
I rearly post anything on here and normally just reply. But I have noticed alot of posting and I was wondering if most of you (your family memembers) know what stage your sarcoidosis is in? I ask becuase I have STAGE IV (since 2000) and I promise you, I have never went through some of the things you all have. I have it in my nose, lungs, legs, arms, skin lesions and had to have a heart catherization because its spreading to my heart (now I have cardi hypertention). Now when if flares up... I can cancel Christmas... but as long as I have had it I have to admit I have had EXCELLENT doctos in Augusta, GA/ Alexandria, VA; Charleston, SC and with Cleveland my hometown, I will be heading for Cleveland Clinic as soon as I arrive.

I was just wondering if you all had been told the stage of the disease?

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To the best of my understanding, Sarcoidosis is not staged that same way as, say, cancer is. It doesn't spread like cancer either. But, that said, it sounds like you have had your share of sarc health issues for sure. I am so happy that you are satisfied with the care that you are receiving.
I just had an injection in my eye today so I am kind of sore. Sure hope it helps my sight to come back.
Cheers!
Carol

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Carol, I wish you many blessing on a speedy recovery of your sight.

As for the stages of SARCO let me provide this to you and the family....

Chest X-Ray: A chest x-ray, which poses little risk to health, can detect sarcoidosis. X-ray beams cannot pass as easily through granulomatous or scarred tissue as through normal tissue. The x-ray may show granulomas, which appear as a shadow, or enlarged lymph glands in the chest. Frequently, sarcoidosis is diagnosed because a chest x-ray, taken routinely or for some other reason, shows an abnormality. A staging system is used to classify chest x-rays taken to detect sarcoidosis.

Stage 0 is a normal chest x-ray.
Stage 1 is a chest x-ray with enlarged lymph nodes but otherwise clear lungs.
Stage 2 is a chest x-ray with enlarged lymph nodes plus infiltrates (shadows) in the lungs.
Stage 3 is a chest x-ray that shows the infiltrates (shadows) are present but the lymph nodes are no longer seen.
Stage 4 shows scar tissue in the lung tissue.

X-ray stages do not tell the severity of the disease. However, in general the higher the stage of the x-ray, the worse the person’s symptoms and lung function (as measured by breathing tests). But there is a lot of individual variation, and persons at Stages 0 through 3 may or may not have symptoms.

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I guess I am stage four according to x-ray as I have fibrosis, but I am not nearly as sick as many, if not most people on here. I was diagnosed in 2000 at stage 1.

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On my very first xray I had fibrotic 'threads', but no nodes, so my fibrosis is not neccesarily from sarcoidosis. The following year the nodes were enlarged, too.

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really IreneMarie, what did they say the fibrotic threads mean? I was just told that I had curvilinear fibrosis in the middle lobe. I never had that before. I did have pneumonia last summer and it wasn't there then. I don't know though. I thought I was past the time for remission. I guess according to the stats I am a 1%er. Too bad I am not economically a 1%er. Oh well.

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Diagnosed in stage 1, progressed to stage 2 which reversed after about 7 years. I was asymptomatic (aside from sternal pressure) and my PFT's were within acceptable limits throughout.

Staging is merely a manner of communicating the radiographic imaging. It is no reflection of of the severity of symptoms nor the prognosis of the disease. The disease does not progress from one stage to another. You may go from one to another but may also present in stage 3 without having been through 1 and 2.

All forms have been known to reverse although it is much less likely in stage 4.

•Stage IV - parenchymal involvement turns into volume loss (pulmonary fibrosis) and there may be other features (cavitations, calcifications, hilar retraction, bullae, cysts, and emphysema).

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I was diagnosed in 1998 after a chest xray (phnemonia)..but a lung broncoscopy was done twice to diagnose the disease. I was never told of a stage...doctors have just run pft's and labs. Have had scans for swollen lymph nodes in chest, but I have never been given a "stage". My doctors just deal with the symptoms. I find this is easier to deal with and compare, as I request all the labs results, tests, histories for my personal files.
I insist on keeping a complete history of every procedure, from every doctor/hospital for my kids, because they would never be able to answer the question, "what does you mom have" if asked. This also helps when going to a new specialist because you can bring everything with you on your visits. I also summarized key points on a spread sheet for the doctor, so we can go over that together. I let the doctors know that I am fully aware of what is going on and that I insist on being informed of everything. Some even think I am a nurse. To be honest, after so many tests and different doctors, I can't keep anything straight (lol). This is my "cheat sheet".

This may help others who feel that their doctors don't know what you are dealing with. I can see patterns and I can recall all my symptoms over time. Doctors have told me this is helpful. They give me that glassed over look when I hand them 20 years of medical records in my spreadsheet. I hope my experience helps a little. I feel if I was given a "stage" it would be on my mind too much, so I just keep track of the symptoms and tests, then I take it from there. I hope my experience helps a little. Good Luck to all.

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WildJane--I am so glad I read your post because the new doctors I have in Tn all say that once you are staged then that staging does not change and I have never agreed with that. Now I see others that are say at Stage 1 at one point and then progress to other stages. Love the new information.

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I just got diagnosed at Stage 2. How it was explained to me was that the goal is to keep you in the stage they find you in (or go backward and into remission) and not enable it to progress. Staging, as I understand it, fluctuates, as others have said.

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So I probably am only in stage 4 as far as having fibrosis now that I didn't have before? I went to Albany med today and saw the cardiologist. I didn't get the results from the tests yet, BUT, I got a direct referral to Dr Marc Judson, next Tuesday . Yahooooo. I am so excited about it. The got me an appointment for rheumatology as well but the soonest one isn't until September. Booo . But I still have one for a rheum and a neuro at Cleveland for august. If I can't get one sooner, I will just wait on the rheum, or go try to get both at Cleveland in August. I guess then I will have more information to go with the staging. They were looking for a hole in my heart today, but I am pretty sure it is a granuloma. We will know by tomorrow I guess.

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I'm not sure that I have been told what "stage" I'm in.

That said, even regarding telling family members that I have been diagnosed with Sarc, I've only told one family member and very few friends. I just wanted to go on with my life as normally as possible. I didn't want anybody calling asking about my condition... nor did I/do I want to be asked questions every time I bump into an acquaintance or see a friend. If I'm having a "normal" day- I don't want to be reminded of the illness. Especially just after diagnosis, I thought about it too much as it was.

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I had always seen people talke about what stage they were in and wondered about this and asked several years ago, and was told that you are only a stage if you have lung involvement. I do not have lung involvement, thank you god! but I have everything else involved!!

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not true that stages are for lung involvment only. the cleveland clinic shows stages for skin involvement too! think about it,the word sarcoidosis is more refering to the skin & not the lungs & lymphnodes,altho 90% of sarcies have lung involvement they say. my case: sarcs biopsied in lungs,lymphnodes,skin,bones & nerves. but i hardly ever have problems in lungs,but boy the bone sarcs,nerves & muscles & joints more than makeup,the inflamation in bones & nerve highway is relentless.

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Thank you sjs73, I always felt a little cheated..LOL...that I couldn't have a stage! No really I am just joking! I am very greatful not to have lung and eye involvement but I have serious joint, bone, and nerve. I was first diaganosed with skin then it went to liver, kidney, bone and spleen removal. I have good doctors that try there best to keep me going and keep my pain down to a level of 7. I also now have OA and probley Fibromyalgia, oh and Rosacea. I feel like a port hole for autoimmune diseases !! Keep the spirit up and have a wonderful day all. PS I am gonna see if I can find out more.

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sjs,

This is new to me. I tried googling but could not find any referencing to a staging for sarcoidosis of the skin. Everything I've found refers only to the lungs and as stated is only a represenstation of radiographic imaging and has no further significance.

Do you have a reference (link) for me? I'm curious as to what the staging of skin sarcoid implies. Seems like it would be really difficult since it manifests in so many different ways in the skin.

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P.S. skin is only involved in about 25% of the cases.

It got the name sarcoidosis because it was first identified by dermatologists. It was only later that the skin lesions were linked to systemic disease.

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I don't think the doctors explained stages to me. Sarcoidosis stages are considered "out-moded".

My pulmonary doctor said "X-rays don't show that much". But she still orders them all the time. I am thinking of refusing the next one. What difference does it make? I'd be the first one to know how I am breathing. Next I'll have cancer from x-rays.

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MaryMay they all like the chest xray,
sjs and plain truus,I have spent much of the morning researching the stages for skin sarcoid with out luck, I was on Cleveland Clinic and Wikipedia.

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i'll try to find where i read about the stages.i 'm sure it was a read from C.C. but that was back in 2008 when i was trying to find out all i could after being dx.

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ok,just went to cleveland clinic found diseases,hit the S then hit sarcoidosis. found by reading at the tissue level there are 3 phases.ok phases not stages,1= inflammation 2= granulomas form 3 scaring form and in some cases this could be fatal.....so this is progression by phases.(stages)tomato,tomoto!!!

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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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