When referring to the “stages” of sarcoidosis, this is referring exclusively to pulmonary sarcoidosis. The stages of pulmonary sarcoidosis should also not be mistaken to indicate the progression of the disease- the “stages” are simply a way doctors interpret the results of scans of the chest- read on for more information. If you are looking for information on severe and chronic sarcoidosis regardless of the organ that is affected, refer to our information on advanced sarcoidosis. Sarcoidosis can be considered advanced when the disease has been active for more than 2-5 years and meets a few other criteria. Approximately 5-10% of all patients diagnosed will suffer from advanced sarcoidosis.
The Staging of Pulmonary Sarcoidosis
It’s estimated that at least 90% of patients with sarcoidosis will experience lung involvement. Chest x-rays are often used to determine the nature of the disease. However, the results of this imaging can cause confusion for sarc patients- your doctor might tell you that the images indicate a certain “stage” of sarcoidosis. What does this mean? Is it like the stages of cancer? Being told you have “stage three” or “stage four” pulmonary sarcoidosis sounds bad- but what does it really mean?
Hopefully, your doctor gives you an accurate explanation of what the stages mean. However, too often we hear from patients who are concerned about which stage they have, what it means, or how long until they progress to the next stage. The stages of sarcoidosis should not be viewed in the way that stages of cancer are- they do not indicate progression of the disease.
In cancer, staging is a way to indicate the size of the cancer tumors, if it has spread to surrounding tissue, or spread to other organs entirely. It indicates progression- in stage IV cancer, the cancerous cells have spread to other parts of the body, making it harder to recover from and requiring a more aggressive, full-body treatment.
In sarcoidosis, staging is a way to indicate the location of granulomas- the lungs, the lymph nodes, or both- and the nature of the disease. If anything, the stages are an easy way for doctors to categorize their sarcoidosis patients, and should not be seen as an indication of severity.
Stage one sarcoidosis indicates granulomas in the lymph nodes. Stage two indicates lymph node involvement in addition to granulomas in the lungs. At first, this might appear to be a progressive diagnosis compared to stage one. However, stage three sarcoidosis indicates granulomas present in the lungs, but not in the lymph nodes. This demonstrates how the stages are not a progression. A patient may even go between these stages- you might have stage two sarcoidosis, and then with treatment or time become stage one, or three, or go into remission altogether.
Stage four sarcoidosis is a little bit different than the other three. Stage four indicates scarring in the lungs- pulmonary fibrosis- which is irreversible. Because of this, stage four is the most severe presentation of sarcoidosis. This also contributes to the misconception that the stages of sarcoidosis follow a progression.
The stage of sarcoidosis does not indicate a level of severity- in fact, each “stage” can be at a different level of severity. An individual might have granulomas in their lungs but nowhere else (stage three) and be completely asymptomatic. This kind of sarcoidosis is often caught by accident on an x-ray for another injury or illness, and may not even require treatment. In another case, someone might have granulomas only present in their lymph nodes (stage one), but experience severe pain and swelling, or other complications.
Make no mistake- all stages of pulmonary sarcoidosis can be severe. Any stage could cause serious symptoms and debilitating fatigue. They can require treatments that lead to nasty side effects or other complications. Sarcoidosis is often mistakenly portrayed as a disease that isn’t serious and will go into remission, and here at FSR we know that is unfortunately not always the case. That’s why we make a point to provide patients and physicians alike with as much educational information as we can. Below is a resource explaining the stages of sarcoidosis. Download the brochure to share with your friends, family, doctor’s office, sarc support groups- whoever you think could benefit from it! Check out our on-demand educational content for resources on other types of sarcoidosis.
This is all very good, but i have Neuro Sarcoid and this lung thing doesn’t help me at all……
How does Cardiac Sarcoidosis and fit into this? I have lung, liver and heart involvement.
I started with Sarcoidsis of lymph nodes with later caused problems within my sinus tract, then to my skin now neuro. where do this fit in as stages.
I was thinking the same. I have neuro sarcoid too. Did have lung involvement but not everyone does.
I also have neurosarcoid. Is there any chart for that or is it something just for sarcoid? I go to Cleveland Clinic every year to see a specialist. I was diagnosed 10 years and I’m doing the best I ever have now.
I have Neuro and Cardiac Sarcoidosis and wish more information available on these varieties. Sadly, this didn’t help me at all.
Christie, I also have sarcoid, and am having some complications that my GP cannot seem to help me with. Can you give me the name of the physician you see in Cleveland? email@example.com Thank you.
This was very helpful to me. I have Stage 4.
What is Neuro Sarcoid? I have been experiencing CNS symptoms. The doctors are saying my sarcoid has spread to my Liver. According to your staging I have Stage 2.Granulomas in my lungs and lymph nodes.
The sarcoid is in my Lungs,lymph nodes and bone marrow. Thw MRI I had of my abdomen and Liver stated it spread to my Liver. and my Lymph nodes are all enlarged cuurently even celiac and groin.
I would be interested in knowing who you see at the Cleveland Clinic? Especially the second week in August they are doing another Chest CT. If my disease has progressed at all they are discussing oral chemo.I may want a second opinion.
Does anyone have issues with coughing due to this disease? I have not been diagnosed yet, two doctors have said that this is what they think it is. They found a lot of swollen lymph nodes in my lungs at the emergency room by accident. I have an appointment with a lung specialist, but I am trying to get any info I can.
Yes. I get stages where I will cough all day and night for weeks and then it stops. Very frustrating and nothing helps.
Can it spread from lung to other organs? I have lung. Going on 5 years now. Yearly flare ups. I’m told prednisone is my only treatment. I hate taking it, you all know I’m sure. It died horrible things to our bodies. Life time use can’t be good for us.
Plaquenil can be used to treat it also. Didn’t help me though. The prednisone nearly did me in, had to stop that treatment too. So I’m just living with effects of the lung sarc.
I see Dr. Debasis Sahoo he is great!!
I’ve had Sarcoidosis since the late 70’s. And yes it can spread to other parts of your body. It started in my eyes and I loss sight for about a month. I had a very knowledgeable eye specialist that had knowledge about sarcoid and I was given a liquid form of prednisone which brought back my sight and it went into remission. After about 5 or 6 years it spread to my lungs because my medical doctor did not follow up with the diagnosis from my eye specialist. Finally, I was able to find a good internal specialist and I was put on 40mg and I gained 30 pounds in one month. I was on and off prednisone for about a year and has been in remissions for over 15 years. On June 2, 2017 I had a biopsy and I found out that the sarcoid has now spread to my liver. Prednisone is the only thing that has helped me. I have begun to do my research which has really helped me and not depend totally on the doctors. I take a lot of vitamins to replace what the prednisone takes away. We need especially calcium, vitamin D, Vitamin E, potassium and a Multi-Vitamin. I also take Geri-lanta before I take the prednisone to help with the heartburn, sour stomach, acid indigestion and bloating. I eat a lot of veggies and it has really helped me. Don’t give up because I have gone through a lot and it’s hard but you can do it. I’ve also gone through the depressed stage. I am putting on my first Health Fair to make more people be award of this rare disease called sarcoidosis.
I use to but they had to have breathing treatments and I was put on prednisone for about 1 week and then it stopped.
That is fantastic. If you also give me the name
Please get a second opinion because before I found out that I had sarcoidosis they were trying to prescribe medicine to me with knowing what was wrong with me. They tried to tell me it was asthma and then they said it could be lupus. Do your research and I wish you the very best of luck that they will be able to help not only you but all of us. Stay strong and I’m rooting for you.
I’m not sure if there is such a thing as stages because my sarcoidosis started in my eyes and then my lungs , Afterwards my skin. I was given shouts under the skin to clear it up and then my sinus but has recently cleared because of the allergy shots I was taking. I was told I was in the 1st stage when my sight went out.
Has anyone had these abrasions that show up on your skin?kinda look like bruises but they itch sometimes, also is anone experiencing any joint pain?
No, not yet. Both the emergency room doctor and my family physician believe that I have sarcoidosis. I am waiting on my appointment with a lung specialist.
I have had Sarcoid since 2008 it started in my lungs and has spread to my heart and brain. Have been on many meds, but two meds that have seemed to helped me the most have been Remicad infusions and high doses of Cellcept (Mycophenolate). I have been treated at the Univ. of Chicago by many Drs. I have had to stop working three years ago, however my quality of life is still very good. The side effects from the meds. for me have been worth the gains from the medications. Cellcept which is mainly a transplant med. works, but does not help when it comes to joint pain.
Still not been formally diagnosed was due to have lung biopsy in March when daughter became severely unwell. Have had ct thorax scans findings consistent with sarcoidosis. Always thought my ailments down to another condition. I have. Have another ct scan on the 5th August as having wait and see approach. Do have health problems have had for years get flares. Eye problems.fatigue.pain.skin.chest pain.asthma.chezt tightness.etc. so the Judy is still out.hsve inhalers use sparingly.take osteocars. Y vitabiotics morphine at times .Use to work in a wheelchair due to his dislocation and c.arthritis.
I have sarcoid of the lungs and suffered from a persistant, irritating cough. I hate medication and avoid at all costs. I invested in a Himalayan salt lamp and haven’t looked back, my cough is only a memory at this stage. I was skeptical but said id try anything once. I attended a salt clinic which was amazing but too expensive to use every day. Salt lamp does the same thing!
I was really sick in Feb 2017, had an x-ray done. The results were that i had Pneumonia and that my X-ray showed some abnormalities. So i was referred to a pulmonologist who agreed that it was abnormal, He sent me to get a CT which confirmed nodules through out my lungs. I went on Prednisone for 20 days and it did nothing. So the next step was a Biopsy which i had last Thursday. My doc says that it is likely that it is Sarcoidosis. Here is the unusual part (at least it seems that way to me, maybe i am wrong I dont know) My Cousin was also sick in Feb and was dealing with chronic Bronchitis and Pneumonia. She has been sick off and on for the last 9 months, never really getting fully better. Her X-ray also shows Nodules through out her lungs and a mass. She also had X-rays, CT and a Biopsy, her Doc says its likely Sarcoidosis. Is it just a coincidence or was there a chance that we contracted the same strand of pneumonia and its done something to our lungs and not Sarcoidosis.
Neurosarcoidosis is any sarcoidosis affecting the CNS- brain, spinal chord, etc.
Here’s an educational brochure that might be useful…we’re working on developing more current resources for patients with various manifestations of sarcoidosis as well, so keep an eye out!
Let me know if you have any questions!
Foundation for Sarcoidosis Research
Hi Mary Ann,
We have some brochures on cardiac and neurosarc from several years back that might interest you:
We’re also working on developing more resources covering ALL organ manifestations, as we know that sarcoidosis certainly affects more than just the lungs! The purpose of this blog was simply to dispel any confusion surrounding the “stages” of pulmonary sarcoidosis and the belief that they are a progressive designation, like the stages of cancer.
Keep an eye out for our new resources being posted soon!
Foundation for Sarcoidosis Research
I’m glad to hear you’re doing well!
Here at FSR we’re working on building new resources to cover ALL of the organ manifestations of sarcoidosis, but for now here’s a brochure of ours from several years back on neurosarcoidosis: https://www.stopsarcoidosis.org/wp-content/uploads/2013/03/Neurosarcoidosis-brochure-online-use.pdf
Feel free to reach out to me with any additional questions you might have, and keep an eye out for the new resources coming soon!
Foundation for Sarcoidosis Research
HI Pamela, I was blessed with a family doctor that actually cares for his patients. When I first went to see him he found everything he could on NS. There was so many doctors that wouldn’t want to see me because they didn’t know what it was or anything about it. It’s a shame that there are doctors in the medical field that doesn’t care about their patients. The first specialist I went to see was in Pittsburgh.His name was Dr. Scott. He has published a study in the New England Medical Journal. I really liked him but I found that Cleveland Clinic had a program for sarcoid. Dr.Carver is the cardiovascular doctor which helps with the Sarcoid Foundation. But since I have neurosarcoidosis I see Dr. Rebecca Kuenzler. I can’t say enough good things about her. She is excellent at what she does. She found the right cocktail of medicine and now I’m the best I’ve ever been. I truly hope this might help you! Sorry it took so long to rely. If you have any others questions please feel free to ask!! Good luck and God Bless
HI Debra I have been going to Cleveland Clinic for 10 years and since I have Neurosarcoidosis I see Dr.Kuenzler. She is a neurologist and is excellent at what she does. Dr.Carver is the cardiovascular doctor you would probably want to see. He works closely with the foundation. I hope this helps you. If I can answer any other questions please let me know. Good luck and God Bless!
Absolutely, I see Dr. Kuenzler a Cleveland Clinic. I’ve been seeing her for about ten years and she is awesome. I highly recommend see her if all possible. God luck and God Bless!
Thank you so much! That was very nice of you!
Thank you Maggie
Hi Samm I have had Sar in both my lungs now for 15years, been on Steroid’s non stop for about 13 years.
Hi Vicki, I take both, the Plaquenil is ok for me at 200mg once daily, Docs started me on it twice a day, but couldn’t cope with it. But now the Plaquenil and pred are ok for me. Don’t get me wrong, I do have some awful side effects, but some days are worse than others. In my case I don’t have a choice. I am on oxygen also. Wish they could find a cure for this awful disease.
Yes according to my pulmonologist
I’m on methotrexate at 15mg per week and 10mg prednisone daily and hoping to go into remission. It’s been a year now after being in remission for 16 yrs prior I have lung sarcoid
I do. But it’s not consistent where I can say yes, all the time or only when____. I suffer from coughing when eating and shortness of breath on occasion. Especially when weather becomes damp with rain. Sometimes I cough all night too and when I lay on my left side for some reason.
I have no ideal how long I have had sarcoidosis, but I know I have had issues getting sick easily, all of my life, like catching the flu even after a shot, and having that go into pneumonia. In my 30’s I started getting migraines, salivary gland stones, weird issues, this progressed into my 40’s, I threw up for 3 days and was just given phenergan and sent home, a few days later came home from work was having trouble breathing, it hurt very much to breathe, I went to the ER and a Dr. there told me from my white blood cell count and labs, he thought I had sarcoid, I had never heard of it, but that it just had not manifested enough to be seen on film, I did have hive type lesions prior to all of this on my lower legs and
across my upper back,shoulders and arms which of course I took steroids for, less than two years later right after Christmas I get pneumonia again, I only missed 4 days from work, I continued to feel weak and cough, a month later, I was getting out of the shower and noticed my legs were extremely swollen,(pitted edema) my knees and ankles had been sore for a couple of days prior, the eye Dr. I worked for saw my ankles, so I showed her my legs, she said I needed to see someone asap, I left work a little early and saw a family Dr. he prescribed lasix, the Dr. I worked for called me the next day Sat. and asked what happened, she said go to the ER right now, this is not normal, so I did, after they did a body scan, they came back and said there was no clot but an abnormal swelling in the hilar region of my lungs and referred me to a pulmonary Dr. he told me he thought it may be related to my recent bout of pneumonia, to continue the lasix and he would schedule me for a follow up CT scan in three months, in the mean time the edema did not go away and the pain in my joints got a lot worse, to the point of crying because I could not do normal activities, I saw a rheumatologist who ran a lot of labs and said my sed rate was elevated but still within normal limits so he could not help me, so two weeks before the follow up CT, the swelling starts to go down, I still had some, but the worst was gone by the time I had my CT, I went in thinking it would be good news, it was all routine until I went to get up from the CT table and two techs were standing there to help me up and send me for more x-rays, I could sense something was very wrong, I was told my pulmonary Dr. would give me the results, I filled out a form and had the results sent to the Dr. I worked for, after I read them I called the specialist and he was out for two weeks in europe, so I talked to his nurse, she said I hate to tell you this but it looks like you have lung cancer, I asked about sarcoidosis, she said that it was slow growing and she consulted with some of the other specialist and they all said it grew way to fast and far to be sarcoid, so she made me a work in appointment with a thoracic surgeon, he said he still thought it was sarcoidosis and did a mediastinoscopy, at which time he removed the lymph nodes from my lungs because he said they were eaten up by it. It took close to a year for the swelling in my chest to go down, I think partially because I could not take time off from work, I still get swelling in my legs and ankles also my fingers and both thumbs will hurt, I have had to take steroids quite a bit over the years since, so I do not believe it goes away.
yes, small scaly sore spots that take forever to go away, I also have two compression fractures of my T11 and T12 vertebrae, 5 herniated disc,osteoarthritis and spondylosis, but it never really hurt me too much until after the sarcoidosis became active.
Has anyone had breathing problems with there sarcoids that stem from there diaphragm
Yes, mine has spread to my liver and pancreas
My husbands Sarcoidosis started in his spleen liver and lymph nodes 7 yrs ago just 6 months they have now found it in his lungs. He is taking methotrexate honestly he has been on it for over a year and with no changes seems like the granulomas are getting worse he is getting his eye checked every three months.
my husband is taking methotrexate have you considered this option
Yes it makes him sick but he could not take the prednisone
Hi. I havent got officially diagnosed yet but my only promblem is that i am short of breath when doin physical activity. The doctor did say that he sees small bumps in my lungs
Yes radiating joint pain. Also has anyone experienced headaches upon standing?
Yes, I cough all day and night my head aches and nothing helps. I hate coughing, sometimes I get cramps from coughing so hard.
Thank you so much die the information. My hubby us a sarcoid. He was diagnised in 2013. Glad ti hear that Geri lanta will help with bloating. Yes… its a struggle but you cant give up.
Yes.. all on my shins.. joint pains in my ankles, feet, and neck.
I am new to this group. I got diagnosed about a year ago by accident. I was diagnosed with thyroid cancer initially. Received a paralyzed vocal cord. I had a 2.7cm nodule in my right upper lung. It is now 3cm. I just had a bone biopsy a couple of days ago. My hematology has been wacky. I am exhausted and in pain all the time with my bones and joints. Has anyone had it go to your bone?
I also have a 1.0cm pre vascular nodule that was positive for the follicular carcinoma. I got treated with radiation, and waiting a clearance for this in April.
Yes, irritating dry cough
I have it in my lungs. I recently got a biopsy bone marrow. May I ask? Did you have any symptoms or lab work done before your biopsy. I am wondering if you had bone and joint pain, and if your hematology was altered? Thank You
I’ve had Sarcoidosis for years, and it has attacked lungs, skin, kidneys, you name it. To Barbie, most doctors who specialize in sarcoid agree that there is in most patients first a genetic predisposition to have sarcoidosis (thus you and you cousin are blood relatives so genetically possible), and second it is trigger by major inflammation from a serious infection (each had pneumonia). You sound right on target to me!
placquenil is also a treatment that gives less side effects if in earlier stages this works well and have for my father for about 10 years until his body got immune to it now he is back on prednisone.
Had sarcoid for 3 years that we know of. It was so bad in my gal bladder they had to take it out. Was going into remission, and it just flared up very fast into my lungs. CT confirmed. Now waiting on doctors to help. Been hurting to breath. Can’t sleep because i keep taking shallow breaths and i wake up gagging. Even with my cpap.
My sarcoidosis is causing me to have high calcium levels. I was hospitalized because it became critically high. And for me prednisone does nothing. All the way up to 80mg a day, for Just over a year and was still growing. Made me take a ton of insulin, very rapid heart 24/7. That was it. They stitched me to methotrexate and humara and the pain started going down and the ct was showing improvements.
I have pain when taking deep breaths. And gives me a dry cough. Mine is just coming out of remission and flaring up very fast
My calcium levels went up. My rheumatologist said the sarcoid was leaching calcium from my bones.
Make sure you are not taking any supplements that have vit D in it. Also when they check your labs the must check the other stages of Vit D in your body because sarcoid can hide it and give you a false low, so they then give you supplements or tell you to take something OTC. do not do that. High calcium will kill you.
Humira and methotrexate worked for me. I was able to get off meds. But i might be going back on them now….
I was at 30mg methotrexate and humira injections once a week. That worked for me. But i am coming out of remission now after just a year…. I guess my body hates me.
I was diagnosed with sarcoidosis in my lungs and lymph nodes initially. Also had skin rash on my shins (Erathema Nodosum?). Then strange lesions appeared on my humerus (shoulders) on X Ray. Later a bone marrow biopsy confirmed sarcoidosis in my bone marrow. I was in the military deployed during OEF and OIF. The VA diagnosed me but the follow up has been minimal to none because I have been in remission and flare ups have not been seen on Chest X rays. I have joint pain, occasional skin rashes and degenerative discs and hips. Hope this info helps.
Sarcoidosis is curable. I had it in my lungs. I found out about the Marshall Protocol. Swedish scientists discovered that it’s caused by mutated bacteria. The way to cure it is by taking a tetracycline antibiotic. So every time I got debilitating bronchitis, caused by the sarcoidosis, I would ask for doxycycline. My lung doctor was completely shocked at my next lung X-Ray, sarcoidosis gone!!! He didn’t listen at first when I told him what I had learned. After the clear X-Ray he wanted to know more! Do the research, cure yourself. I was pretty ill. I have some resultant COPD, but I’m so much better than I used to be
I’m in remission. It’s curable. Research the Marshall Protocol on the Internet.
I can not find a doctor who knows anything about this, I have lost my job after 38 years and now have no insurance, so can’t get help, I started working at 16, two jobs from 20-33, then one full time job until recently, never had hardly any time off work, never had children, now I’m old and broken so society just wants me to die, and so do I, I believe in God so I will not kill myself, but I hope he takes me soon. I can’t live like this much longer, the world is so cold and uncaring, your pain and sufering does not exist because they can’t feel it.
mine was in my lungs, the thoracic surgeon removed all of the lymph nodes from my lungs, but yes I believe its in other areas, like sinus and eyes.
Teresa….I have the same…..been in remission for quite awhile, but the dry cough and pain when talking deep breaths is now acting up…..doctor said time for steroids, but I am mentally fighting it like crazy……I just keep hoping that I will wake up in the morning and ‘remission’ will be back…don’t know how much longer I can ignore this
Yes I’m experiencing this now
I do believe you can still sign up for the affordable care act. They are trying to change the Act but they have not canceled it all together. There is help out there if you don’t have any insurance….either free clinics, ACA insurance or Medicaid and Medicare. If you are over age 62 …I believe you can receive Medicare ins and if you have low income or no income you can also receive state help for insurance through Medicaid. Pleas…. don’t give up! You have so much to live for. Ive done a lot of research on the antibiotic treatment called Tetracyline and doxycycline. These are two antibiotics that have shown much promise in curing (not remission) Sarcoidosis. Now the hard part is trying to get doctors to prescribe this medicine. I plan to take my doctor some of the research and begging him to prescribe this medicine
husband has it lungs only – no medications given just cat scan every 6 months to a year – frustrating, wish I could help him he coughs all the time and sometimes even throws up because of it – mucus, etc – ANY advice please – diagnosed 2016
@Nio Did your sarcoid cough, bring up mucus before the lamp? My mom has a persistent cough and has to spit mucus several times a day.
@ukamerican How long did you have sarcoid in the lungs before you tried teh doxycyline, and became cured? Also, can you clarify what you mean that you have some resultant COPD?
@SG Recruiting. Ya i did. Before i was diagnosed it was extremely bad. Some mornings it was so bad i would have to stop the car on my way to work and get out. It was constant all day.
@nio how long did it take for the lamp to have a good affect on your lungs?
Yes. I have and very itchy. I pat them instead of scratching
Sorry to hear
Please pray because it saddens me to hear you speak this way. I’ve been there and God has kept me. Where do u live. State?
I pray you are doing better.
I was just diagnosed a few days ago with pulmonary sarcoidosis. I saw 4 doctors before one actually took the time to help me. I have been having trouble breathing for 3 weeks, no voice, fevers, high heart rate and extreme exhaustion. Finally, an ER doc did a bunch of tests and found my white blood cell count was over triple the normal count and my heart was 122bpm. I just finished daily IV treatments and nebulizers and am now on 6 weeks of steroid treatment (I go down 10mg per week to ween my system) and antibiotics and nebulizers at home. So many symptoms I had for years but because I have severe fibromyalgia, many of them were said to be because of it. Does anyone else have fibromyalgia along with this? Anyways, I’m not sure the stage I’m at yet as the CT scan results have not come back, but I wish all of you the best with dealing with pulmonary sarcoidosis, it’s not easy, but painful and scary.
I think, based on my own experience, that you are severly depressed. When I got that way, I found God and then a preacher to pray for and with me.
As for help, start with social security disability benefits.
Get Medicare insurance and Medicaid if needed.
Get your physician to send you to a lung specialist, request to be sent to Cleveland Clinic for double lung transplant.
I used the Veterns administration and social security/Medicare got double lung transplant seven years ago, the medicine to prevent rejection has given me sugar/kidney disease and I lost most of my sight prior to transplant. Have had the sores, broken bones and pain, BUT…I am, still on this side of the grass and, thank GOD everyday that I wake up.
GOD BLESS!!! I will pray for and with you.
I have gotten the abrasions your speaking of. on my legs first it was like geting a pimple then it grew and turned black and blue as it disapates it gets painful and very itchy. I was diagnosed after 3 years of suffering with it, with Sarcoid nedusomes. ( prob spelled that wrong lol ) I was told nothing will help but we keep monitoring. My drs keep watching because it can spread to liver and lungs. One time I went in for a spinal surgery, my legs were bad, stupid nurse in hospital thought my husband beat me. I told her what it was and she argued with me saying Sarcoid is only a lung disease. several days later she came back and appologized as she looked into it further and found out she was wrong. It gets worse every year. some summer days I will not go out . Once they disappear I normally get about 2 months of lump and pain and itch free time. These doctors need to do a better study into it .
Sorry for the late reply, l don’t always read all the posts but just came across yours. If you can manage to get insurance get you doctor to refer you to a psychologist for counciling you will be amazed how it helps to talk to someone other than a friend or family member that realizes what you are going through and listens and helps you get through things. Amoung my 10+ auto immune diseases,, chronic daily migraines and numerous other health problems, to add to my list of ailments l just recently had a heart attack. I am not dealing with it well and counciling is helping. Also you may want to talk to o your doctor about some depression medicine, feel better.
Thank you for your kindness and support!
How much methotrexate is he on daily or weekly? Can anyone who is on methotrexate tell me what the maximum dose is? I am on 5 small yellow pills one a week. If it is working for other people I want it too. I was diagnosed in 2015. The first year and a half was relatively good, just very low oxygen levels. Since then it has been a nightmare. It has damaged my lungs severely and is in the lymph nodes and has moved to the heart and caused serious problems there. I am starting to get bad headaches every day for the last 6 months. I am worried that it’s in the brain now. I want a PET scan to confirm or deny it. Does anyone out there who has had it in the brain can tell me what their symptoms were before they learned it was in the brain? Also as it went to other organs what were your symptoms that made you suspicious that the sarcoidosis was on the move again? I thank you for your advice.
Thank you for your kindness!
Maybe you should go on home oxygen machine.
Absolutely sometimes my oxygen level goes down to 62. I am on oxygen at home.
Absolutely some times I start coughing and I just can’t stop. I have an oxygen level machine that just goes on my finger, so small I can keep it in my purse. 5 minuets of coughing can take my level from 95 to 72. Very bad!
Sometimes cough drops will help me a little especially if I have one before the coughing gets out of hand.
Coding can help the cough a lot. We can get it over the counter at a pharmacy ie. you have to ask the pharmacist for it ,but you don’t require a prescription. They take your name and address because it can be addicting if you take to much. I live in Canada so it’s cheap too.
Sorry I misspelled, I meant Codine instead of coding.
I would like the brochure too please. My email is firstname.lastname@example.org. Thank you ! If you need my address I can provide it.
Joint pain often. It can be unbearable. Get it in the knees, toes, fingers, wrist…some of everywhere… hurts like hell at times.
Yes, sounds like me! Some times the pain shows up in a entire new place. People say exercise, but how? I’m so tired all the time. I changed the shocks on my car. Afterwards I felt like I blew mine on my body.
Yes! I got it in the skin also, the doctors said it was the worst they ever seen. Its all over my back, butt, legs, arms, chest, and nose. The only thing that helps me is the one med we try not to take, prednisone. The doctors tried everything and I’m tired of all of them. joint doctor,skin doctor, eye, lung, rheumatologist, foot doctor. And of course phycologist. Please somebody tell is there one doctor that can help it all?
I have been there, lost my job, lost all my friends, my kids barley come to see me. I have no energy. And the pain is so bad sometimes I just cry. I was suicidal for years, (14 years) now I just live, and every time I laugh, I thank God, every time I eat, I thank god, and of course every smile, I thank god. Sleep is hard for me so a good hard two hours feels like a new life. People only see the outside of you and think there’s nothing wrong, but you no yourself better than anyone. just hang in there and enjoy every good time you have. I can’t wait for the delicious baby back ribs, that i’m going to cook for my self. enjoy yourself that’s the key.
No, you hate your body! do things to make you happy that’s the key. I have sarcoid, and it caused all kind of other problems. I shattered my hip. But you better believe I still enjoyed myself, I walked 6 blocks on my cane and got my beer every other day. And when I was off the cane I Limped back to school and got my degree. Trust me its better to accept all the pain and illness, and live on. Example: So what my back is out, that want stop me from watching a good funny movie.
I was diagnosed back in 2015 with skin sarcoidosis on my lower legs. Currently having my 3rd flare up now. Joint pain in my hands seem to be a warning before my legs flare up. My tattoos get flared up too. This time has been the worse one so far. Getting another chest xray and blood work done tomorrow, always do when I have a flare up. The spots hardly ever itch but they hurt and burn. Lungs have been negative so far. Fingers crossed I hear that tomorrow too. Haven’t found a dr that knows anything about this yet. Just a bunch of medical bills that are no closer to answers.Wondering if anybody has has skin sarc first then it showed up in your lungs? Keep Looking Up
I was on Prednisone but had a really bad reaction. I nearly jumped out of our car on a highway because I was so over anxious. The lumps are lasting longer now Scotty, Thank God for my Therapist and my one dr who keeps me calmer. She told me that since I cannot take the Prednisone she is keeping me on the anti-depressant (which I am taking for another issue with my brain ) it helps but I still cry and refuse to wear anything that shows my legs. I did notice a few days ago it is spreading to my back and hips. I too am tired of the drs. I just moved to a new state and the drs here are starting basically from scratch even though they have the records from the others. I refuse to go through all the painful tests again. I guess I will add my list of things to Thank God for by thaking him for this Thread. reading all these comments truly has helped in knowing I am not alone. God Bless Scotty and everyone else. Lets be the drs and if we find something that helps let us inform each other . We will probably get furthur than the Drs do.