Stage 1 ~ 2 ~ 3 ~ 4 in sarcoidosis...what does this mean?

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I was diagnosed with sarcoidosis in 2004.  I had a biopsy of the lymph nodes and lungs and it was there and in a bad way.  I was told I was in stage 4 of sarcoidosis and all I thought was...omgosh! stage 4 that means it's bad like stage 4 cancer is.  Can anyone help me understand what exactly this means?

Frustrated

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  • Posted

    Hey Frustrated,

    I also have stage 4 sarcoidosis. I have it in my lungs, so I can only offer you details regarding lungs, no other organ. I asked my doctor and she explained me this:

    stage 1 - there is some inflammation present (adenopathy) - stage 1 sarcoidosis can be confused with alveolitis (inflammation of alveoli), which can occur due to different reasons.

    stage 2 - there are some nodules present within the lungs, with paratracheal lymph node enlargement.

    stage 3 - it is worse than stage 2, and most patients already show a tendency toward fibrosis.

    stage 4 - pulmonary fibrosis is already present, and pulmonary function is compromized. (in my case, FEV 1 is 47-48%, when it should be over 90%).

    a patient with stage 4 sarcoidosis can live quite long, but it all depends on future exacerbation episodes and treatments. I'm going through an exacerbation right now, and my doctor is seriously considering putting me on immunosuppresive drugs in order to decrease inflammation and prevent fibrosis from spreading and affecting my respiratory function even more. In some cases, sarcoidosis stays in a latent stage for many years, so the disease will progress slowly. In fact, sacroidosis is known as a slowly progressive disease.

    This doesn't mean that stage 4 sarcoidosis is like stage 4 cancer. In some patients who suffer from stage 4 sacoidosis, only small portions of lungs have been affected by fibrosis; in this case, the pulmonary function can be even 70-80%, which is quite good. This patients can live very long, but the pulmonay function will decrease over time. I hope it helps. All the best... smile

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    • Posted

      Hi Magdafloasiu

      I'm also a stage 4 sarcoidosis in the lungs. Please on this post you sended. Fev 1. Is this the test where we have to Breath into the machine. And gives your the reading of how much oxygen is in the lung. As mine goes from 70 to some times 55%? I don't use oxygen tank just use a Foxair inhaler. I work on sea. Only problem is the shortness of breath. Well now is it just that? Some times I get confuse with these graphs the doctor shows me. And always tell me oxygen is down or up. And it does infect my heart rate aswell. So is it that the FEV1 You talking of?

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    • Posted

      Hi,

      I was diagnosed with sarcoidosis since 1984. Since then my right eye been affected. Now the doctor wants to put me on Methotrexate. I'm worried about taking this medicine.

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    • Posted

      Hello the question I would like to ask you my boyfriend is at stage 4 and he is on oxygen everyday all-day and when he go to the hospital they really don't do anything but give him a steroid shot and let him lay there for hours . I just went to the store and got him some vitamins to see if that would help with him feeling better. I made him an appointment in Atlanta but it's still far away before he get the right medicine.what type medication you take to make you feel good on a daily basis.

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  • Posted

    If you want to find out more about pulmonary function, there is an article called "Pulmonary Function Tests" published on NCBI website. Here is the link (I don't know if admins will remove it or not - although they should not since it is a government not a personal site): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229853/
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    • Posted

      Oh my gosh!  I am so sorry for not responding back to you...I guess I didn't  have a reminder come to my email...or I may have just missed it. 

      I want to thank you for that wealth of knowledge.  My doctor tried to explain the stages but I'm afraid she isn't really that knowledgeable about sarcoid.  I'm in stage 4 as well and my oxygen levels go from 58 -90 at any given time.  I'm a mess when it drops to 58 and have to go to the hospital...which I cannot stand doing!  I am afraid I may end up with an oxygen tank and that nose "thingy" for full time.  I guess it will depend on how many days my oxygen drops to 58, right?

      Again, I apologize for the late response.  I do appreciate you taking the time out and giving me so much info on the stages.  I also will check into that site you are referring.

      Warm regards,

      Frustraatedd

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    • Posted

      Hi Frustrated,

      no need to apologize! It is quite strange that your oxygen levels vary so much. Mine drop from 94-95 down to 82-87, depending on physical activity. In my country, doctors prescribe oxygen when FEV1 is below 50%, regardless of desaturation, which is quite stupid. There are patients with Fev1 70% but the desaturation is so serious that they cannot do anything around the house. These people should be put on oxygen because serious oxygen fluctuations usually lead to heart problems.

      I use supplemental oxygen in the morning, after waking up for about 2 hours and in the evening for 3-4 hours. My doctor told me to use the oxygen all night long, but the machine is too noisy - I have a small apartment, so even if I put the machine outside my room, I can still hear it. If you have a bigger apartment, you can put the machine in another room; oxygen cannulas can be extended to almost any length, so it should not be a problem.

      Oxygen therapy isn't that bad. Yes, people are usually reticent, but only after you have it in your house and use it whenever you need (or want), you understand how valuable it is. Additionally, oxygen is very important for your internal organs, including heart and brain, to function properly. So, in my opinion, the earlier you are put on oxygen, the better it is for your overall health condition.

      Yesterday, I found out that I developed cataract in the right eye - it is in incipient stage - and I also have some inflammation in the left eye. The eye doctor said that It is related to cataract - I also believe so - but he didn't prescribe any drugs to me. I will go for a checkup after three months and I'll ask about treatment. Do you have any eye problems due to sarcoidosis? Are you taking medicines? Thank you!

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    • Posted

      And yes, I forgot to mention, I use supplemental oxygen every time I do any physical activity, including vacuuming the house, cleaning the bathroom, etc., to avoid stressing my body too much. In this case, supplemental oxygen has the role to replace the oxygen the body is losing during specific activities. 
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    • Posted

      Hi Magda ~

      Thank you for responding.  As far as my oxygen, I'm going for a study in a week or so..don't recall the date.  My doctor is really proactive with this because I've had two pulmonary embolisms..one in each lung at the same time.  That was caused by surgery I had two days prior on my spine and the nurses didn't check my leg pumps  so I wouldn't get any embolisms..good job nurses!   Anyway, since then, I've had pretty good care from my cardio doctor and pulmonary doctor...both agree that my oxygen fluxuates way too much.  I can't do much as far as any cleaning; one because of my back and neck and the nerve damage in my legs...from an auto accident...and two, from the sarcoid and sjogrens.

      I do have problems with my eyes from sarcoid...I do get check every 6 mths.  I had so sever dry eyes that I would get a scratch on my cornea and this went on for over a year.  They'd clear it and it would happen again...my eyes were just way to dry...even with drops.  I was referred to the Kellogg Eye Center and it was there that I was diagnosed with sjogrens.  I do have special lenses called "prose lenses" it took me 6 months to learn how to put them in because they are much larger than a regular contact.  It also has fluid in it so my eyes are protected plus the bonus it gives 20/20 vision.  However, I've had so many problems with the "creepy crawlies" I don't put them in because I don't want any to get into the lens thus being closer to my cornea. 

      The creepies are  parasites...I'm pretty sure that's what it is.  However, my cornea specialist says most of the stuff I'm feeling is from sjogrens.  Both sarcoidosis and sjogrens are such nasty diseases...I really feel for any one who is suffering from these two or even one of them.  I've had sarcoidosis since 2005 and dx'd with sjogrens in 2013 but I do believe I had it the year prior when my eyes were so out of control. 

      So, if you feel that your doctor isn't giving you the care or helping with the dryness, ask to see a cornea specialist because many are very familiar with sarcoidosis and sjogrens...at least in the US.

      I will let you know about the oxygen...I'm guessing I'll be on oxygen as well...that's also part of sarcoidosis. 

      Anyway again thank you for your input...I really appreciate it.  Take care

      Frustrated

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    • Posted

      Thank you for your quick response, Frustrated! My only problems with the eyes are cataract and inflammation. I wanted to see if you get any treatment for similar issues. My eye doc told me that it is quite strange to develop cataract at 30+ years old. This is a disease affecting especially 70/80-year old people. He believes that cataract has developed in my case due to recurrent inflammation inside the eye, which can be related to sarcoid, actually untreated sarcoid.

      My ACE levels have been high for more than a year, so the disease has been probabily active during all this time, causing inflammation within the body. My pneumologist did not put me on anti-inflammatory drugs because I had TB and she was afraid that anti-inflammatory meds will reactivate that, which will be terrible, and because my ACE levels were only slightly higher than normal (e.g. 31 - 33 when the normal range is between 21 and 27, as far as I can recall). Now, that ACE levels rose from 33 to 39 within several months, my doctor said that sarcoid exacerbation won't solve by itself and gave me some anti-inflammatory drugs for a short period. We'll see how it goes.

      Anyways, I will pay attention to dry eyes as well. Once a person gets a systemic disease, more health problems will occur. Until now, I've never heard of sjogrens; but I read about it, and it's a terrible disease. I'm so sorry that you have to deal with it as well. Life isn't easy, but hang in there!

      All the best, smile

      Magda

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    • Posted

      Hi Magda ~

      For the inflammation of my eyes, the eye doctor  put me on steriod eye drops.  That pretty much took care of that problem  As far as the cataracts, that is something that does develop later on in age, however, it's also part of the sarcoid and the spin off from steroids.  For that reason,  I see an eye doctor every 6 months.  The cornea doctor I see every 3-6 mths depending on the situation. 

      As far as inflammation of parts of your body, my doctor referred me to a Rheumatologist which deals with the inflammatory part of sarcoid.  I was put on steroids for almost 2 years but afterwards, I was put on methotrexate and plaquenil.  I'm currently on that.  It looks as though I may have to take this for quite a while since my sarcoid is still very active.  These meds also help with the sjogrens.  Both diseases are an inflammatory problem.

      That's awful that you've been through TB...that's scary stuff!  You said it could become active if the wrong drug is given to you, is it something that lies dormant forever? I'm guessing you have to be very careful with just being out in public since TB can be contracted airborne, right?  JeezzLouiseee...that is awful. I'm so sorry you are dealing with those issues and sarcoidosis.  Sarcoid can knock you out with being so tired and all the other goodies it has in store.   I'll add you to my prayer list with hopes your TB stays put and doesn't come back.

      Sjogrens is somewhat new or rather brought out in the limelight for a decade or so.  It's only a few doctors that have actually studied it and are now treating, in my case, people in Michigan, Ohio, Illinois, Indiana not sure what other states.  US currently has 4 clinics throughout.  I'm sure it will cover more as soon as word gets out  to specialize in sjogrens because it will bring the doctor more money and oh how they like the money...there will definitely be more clinic available.   My doctor told me that Europe has many areas that have clinics set up already.  He did study for a while in Europe to see just how it's handled.  Well, I do not wish this on anyone.  Currently, my eyes are so badly inflammed, I'm just stalling and praying I do not  have to go in for more "drugs". 

      You take care of yourself...it sounds like you're doing a good job of it!  Kudos to those who take care of themselves...especially when the doctors really aren't trained in either disease...as they should be.

      Hope to hear from you.

      Frustrated

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    • Posted

      I wanted to add that I'm having some computer problems and I'm sure I'll have to have it checked and taken care of.  So, if you do write and I don't respond right away or w/i a day or so, it's because I don't have my compter back :P 

      Ciao bella!

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    • Posted

      Hi Frustrated,

      thank you so much for all your responses!

      Yes, TB is a terrible disease, dormant as long as immunity is high. As soon as the immunity drops too low, the disease reactivates. For this reason, the prednisolone treatment must be given by a pneumologist, as s/he can monitor x-rays and see if TB is back. I have a strange form of TB, which forms nodules with TB infection inside my lungs. I have no sputum, so the disease cannot be diagnosed too easily; however, the good thing is that I don't spread it. I live with my husband and mom, I used to have many colleagues just before 2009, when I was first diagnosed with this disease, and (I'm proud to say biggrin that nobody took TB from me. I'm so happy that I did not spread it because, if the disease is terrible, the treatment is even worse. I used to feel so sick after taking the tablets...they are right after cheamo drugs in terms of toxicity.   

      I will definitely talk to my pneumologist next week (she is on holiday now) and I will see another eye doctor to ask for a treatment. I also intend to see my homeopathic doctor soon. In the past, I solved many health problems with homeopthy (I know it sounds incredible), and maybe it can help me with inflammation due to sarcoidosis too.

      Thank you once again for encouragement and advice.

      Wish you the best and hope your comp will be up and running soon smile

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    • Posted

      Hi Magda!

      Oddly, early this morning around 3 am, I woke up to my compter running when I knew for a fact that I turned it off.  So, I wanted to show my husband what it was doing and wouldn't you know, it was running like it did when I first got the computer...really good!  So, hopefully, I have not jinxed myself but I should be able to respond at a better rate than once thought.

      I have to say, that the mexo and plaq are also drugs they give to chemo paitents.  This does make me wonder if it's come to that, what happens when those two don't work...it scares me to death.  I'm not afraid of death but I'm just settling in with all my grandkids because for almost 7 years of their lives, I was terribly ill.  So, I just want to enjoy them a bit..with hope and prayers that may happen!

      I have to agree with you regarding the homeopathy. One of my dearest friends had problems that general drugs weren't helping her in fact, it was adding to her problem. She started with homepathic route and she has found very good results.  She swears by it.  I'm going to get the guts to go see the one she is currently seeing before my friend moves to Colorado. 

      I wish you well and hope to hear how things are moving along with you.

      Warmly

      Frustrated

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    • Posted

      Hi magdafloasiu, I too am having problems with my eyes. My doc says it's the sarcoidosis. I had cateract surgery before I found out I have Sarcoidosis. I was seeing 20/20 and boy did I love it. Never had to wear reading glasses. Now I am at 20/50 and blurred vision.  A few days ago I started coughing and I can't stop. I went from 40mg prednisone to 5 and was doing pretty good. Now a bad flare up in my lungs. Going to see my doc soon.

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    • Posted

      I had the same problem re a flare up in my lungs when I got to 5mg a day. Doctor put me back up to 20mg and been reducing for the past 18 months now at 2mg a day with no problems. I’m stage 3 sarcoid. Don’t worry keep at it 
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