Online Health Chat with Daniel Culver, DO and Kristin Highland, MD
May 6, 2013
Sarcoidosis is an inflammatory disease that affects multiple organs, but most commonly affects the lungs and lymph glands. Although it occurs throughout the world and can affect individuals of all ages, races and both genders, sarcoidosis most commonly strikes adults between 20 and 40 years of age. Since sarcoidosis mimics many other diseases, the number of people who actually have sarcoidosis is thought to be considerably higher than the number reported. The disease can appear suddenly and then disappear, or it can develop gradually and produce symptoms that come and go for a lifetime. Treatment is aimed at improving the quality of life for patients with sarcoidosis.
About the Speaker
Daniel Culver, DO is a staff physician in Cleveland Clinic’s Department of Pulmonary, Allergy, and Critical Care Medicine. His clinical interests include sarcoidosis, pulmonary alveolar proteinosis, critical care, and interstitial lung diseases.
Dr. Culver completed his fellowship in pulmonary critical care medicine after completing his residency in internal medicine at Cleveland Clinic. He did his internship at South Pointe Hospital, Warrensville Hts., OH after graduating from medical school at Ohio University College of Osteopathic Medicine, Athens, OH. Dr. Culver is a fellow of the American College of Chest Physicians and a member of several professional associations, including the World Association of Sarcoidosis.
Kristin Highland MD is a staff physician in Cleveland Clinic’s Department of Pulmonary, Allergy and Critical Care Medicine. Her research interests are in scleroderma interstitial lung disease and pulmonary hypertension. She is recognized as a national and international clinical expert in pulmonary manifestations of connective tissue diseases and has served on the Interstitial and Diffuse Lung Disease steering committee for the American College of Chest Physicians.
Dr. Highland completed fellowships in rheumatology and pulmonary disease at Medical University of South Carolina (MUSC) Medical Center of Medical University of South Carolina, Charleston, SC, and further medical training in the United States Air Force, Altus, OK. She completed her residency in internal medicine and family medicine at (MUSC) Medical Center of Medical University of South Carolina, Charleston, SC. Dr. Highland graduated from medical school from Indiana University School of Medicine, Indianapolis, IN.
Moderator: Welcome to our Online Health Chat with Cleveland Clinic experts Dr. Daniel Culver and Dr. Kristin Highland. We are thrilled to have them here today for this chat. Let’s begin with some general information while the doctors begin answering your questions.
Let’s Chat About Sarcoidosis
Sarcoidosis Diagnosis and Follow-up
atgreen: I am a 71-year-old African-American female. I was diagnosed with sarcoidosis in last August. Is it possible that I have had the disease for years and just did not know it?
Kristin_Highland,_MD: Yes. Sometimes sarcoidosis can be found incidentally.
drdebt: Are the granulomas found in pulmonary sarcoidosis of the same make-up as osseous sarcoidosis? While I understand bone sarcoidosis is typically treated by rheumatologists, is the treatment different? It seems like the same medications are used.
Daniel_Culver,_DO: In general as far as we know, all the granulomas in different organs have the same make-up. The therapy for all of them can be similar. So, it is less important what specialty defines your physician, and more important that he or she is willing to look at the whole picture, and not just one organ—we call that ‘the quarterback.’ For bone sarcoidosis, probably 90 percent of patients do not require treatment. When it is treated, sometimes the antimalarial hydroxychloroquine can be effective. Sometimes we need to use more powerful medications.
soccermom: Can sarcoidosis be the diagnosis even if there is not significant damage to the lungs shown in scans? I have significant damage to liver (almost to cirrhosis level), which doctors think may have happened many years ago. My liver biopsy showed granulomas. All possible liver disease diagnoses (including alcoholic cirrhosis, hepatitis, HIV, etc.) have been ruled out, and the symptoms of sarcoidosis seem to match many symptoms. A CT scan of my lungs showed only a couple of calcified granulomas, but I do have reduced lung capacity. All of my blood work comes back normal. Does a diagnosis of sarcoidosis make sense for a situation like this? If so, is there concern that additional damage may occur, or do you think it was active years ago and this is just the result of the earlier damage? I am a 45-year-old female.
Daniel_Culver,_DO: Finding granulomas only in the liver makes it tough to make a diagnosis of sarcoidosis. There is an entity called idiopathic granulomatous hepatitis, and also a disease caused primary biliary sclerosis that can look a lot like sarcoidosis in the liver. I would need to see a granuloma in another organ to make a confident diagnosis of sarcoidosis.
A very frequent misconception is that the radiologists' term ‘granuloma’ means sarcoidosis. What the radiologist is really talking about is far larger than an actual granuloma. It is a collection of calcified scarring or a nodule that is calcified. It is usually due to a prior fungal infection, not to sarcoidosis. So, a radiology reading of a few calcified granulomas generally has nothing to do with sarcoidosis. It may be useful to come to Cleveland Clinic to see Binu John, MD, who is a liver doctor with a particular interest in these issues.
Livertx: My gallbladder was crystallized and removed. Could that have been because of sarcoidosis? Later on I had a lump removed that was sarcoidosis.
Kristin_Highland,_MD: It is hard to know. Typically granulomas should be reported in an organ with sarcoidosis involvement.
LSB1076: I was diagnosed in 2007 with atypical sarcoidosis in my lymph nodes and have not received any treatment due to a lack of insurance. How important is it to have a check up and what should be done? My symptoms come and go, and are related to muscle, joint, and bone pain. I control my symptoms with ibuprofen and Epsom salt baths. I am obese; I am five-foot tall and weigh 212 lbs. However, I have been eating healthier and walking two to three miles a day, so I have lost 10 lbs in the last two months.
Kristin_Highland,_MD: Congratulations on your move towards a healthy lifestyle. We typically recommend that everyone with sarcoidosis has a baseline ECG (heart tracing) and a yearly eye examination. Yearly pulmonary function testing and blood work are also ideal.
mk6291: I have a lot of different symptoms, but none seem to be as bad as others have. How do you know when they should be treated?
Kristin_Highland,_MD: Anything that threatens vital organ functioning should be aggressively treated.
Kerm09: Is there a connection between daily serious fatigue and pulmonary sarcoidosis?
Kristin_Highland,_MD: Yes. Many patients with sarcoidosis also have sleep disorders and fibromyalgia. Ask your provider for a referral for a sleep consultation.
Peaches7: I have bouts of extreme exhaustion that cause dizziness and a physical draining that prevents me from continuing anything until I go to bed for however long is necessary. This can be between 15 minutes or several hours. My doctor's response is that I shouldn't be having this. I have it and it interrupts my life. It makes me extremely undependable because I have no idea when it will strike and how long it will take before I can resume my activity. I'm aware of my customary exhaustion from sarcoidosis. However, this seems to be excessive. Any ideas on how to overcome it or what is causing this problem?
Daniel_Culver,_DO: I would ask for a consultation with a sleep specialist and start with a sleep study.
Riky1010: Approximately three years ago I had a cyst removed from the top of my head. When I received the biopsy results they were good, but the doctor stated that I should get a chest MRI because I had cells consistent with sarcoidosis. So I had an appointment with another physician. An MRI showed a scar or something. The doctor attempted a biopsy, but could not reach it. Could this tiredness and other problems like having a fever without being sick be related? I really am tired and listless. What else should I look for?
Daniel_Culver,_DO: You raised two important points:
- The diagnosis of sarcoidosis requires looking at all the evidence—just a finding of a granuloma in a skin cyst would normally not be enough to be certain about the diagnosis. It may be and may not be sarcoidosis, depending on the entirety of the rest of the tests and the pathology under the microscope of the granuloma.
- Sarcoidosis patients may have quite a few symptoms, but they are also allowed to have illnesses and symptoms in life that are unrelated. Distinguishing the two is a very tricky part of managing sarcoidosis for us, and there's no easy answer.
live4g0d: Does sarcoidosis cause legitimate pain? I have had severe pain in my back for at least a year before I found out that I had sarcoidosis. The pain led me to a doctor who discovered sarcoidosis. However, my doctor does not think that sarcoidosis causes pain. If it is the cause, which type of specialist should I need to see to get this resolved? I am concerned that I am limiting my diagnosis by only seeing a pulmonologist, but do not want to seem crazy.
Kristin_Highland,_MD: Yes. Patients with sarcoidosis often have pain and an overlap with fibromyalgia, a chronic pain syndrome. That does not mean that you necessarily need immunosuppressive therapy. You may benefit from seeing a pain specialist or someone who specializes in fibromyalgia.
sckw: I struggle with varying degrees of pain in specific locations in my chest. Is this caused by inflammation due to sarcoidosis?
Kristin_Highland,_MD: Probably. Chest pain is common in sarcoidosis.
kian17: How do you confirm that joint pain is related to sarcoidosis? Arthritis has been ruled out. Will it show up in a PET scan?
Kristin_Highland,_MD: There are characteristic radiographic findings for sarcoidosis-associated arthritis. Plain x-rays of the affected joint would be a good start.
joyfulinlord: I have sarcoidosis. My physician says my lymph nodes will never go down—they are all swollen in my lung area. I have multiple nodules. Do you think my lymph nodes can go down?
Kristin_Highland,_MD: Possibly, but they may not. If you are asymptomatic, I would try not to worry too much.
BetsyRoss8: I was diagnosed with sarcoidosis about one and one half years ago. My symptoms included noticeably swollen lymph glands in my neck and a hoarse voice. I have had several tests to monitor my disease and nothing was of concern. For that I am extremely thankful. My question has more to do with a curiosity about the onset of my symptoms. It came at a time when I allowed my daughter to get a cat. Is sarcoidosis any way related to allergies? Also, since I don't have any problems with the disease currently, I am not sure which type of doctor I should follow up with. I have been to an ENT specialist, a pulmonary specialist and my primary care physician. My lymph glands in my neck are still noticeably swollen and my voice is still very hoarse.
Kristin_Highland,_MD: It sounds like you may still have some sarcoidosis activity given your current symptoms. Typically, most patients regularly see a pulmonologist, but there are many other experts in other disciplines. A ‘hypersensitivity reaction’ can have a similar pattern to sarcoidosis on lung biopsy, but I would not have expected all your current symptoms to be cat related. The only way to know for sure is to limit your cat exposure.
Jbug: I have pulmonary sarcoidosis. Can sarcoidosis affect the sinuses? I have had two sinus surgeries, several sinus infections and a loss of smell and taste. Is there a way to test to see if my sinuses are affected by sarcoidosis?
Kristin_Highland,_MD: Yes. Sarcoidosis can affect the sinuses. Consider asking your sinus doctor to take a biopsy. It can sometimes be difficult to treat and may require a more aggressive approach to therapy.
MommaWesty: Does this disease affect your balance? Can it cause dizziness?
Kristin_Highland,_MD: Yes, it can. Sarcoidosis can affect various parts of the nervous system that can be responsible for balance and can result in dizziness.
sarcoid: My spleen was full of sarcoidosis and was removed. I also have known spots of sarcoidosis on my liver. Would spots of sarcoidosis on liver cause chronic nausea and vomiting and flare-up of gastritis? Also, if my liver enzymes have jumped higher in numbers in six months, but not out of normal range, is this anything to worry about?
Daniel_Culver,_DO: Your symptoms are probably not due to liver sarcoidosis unless you have substantial blockage of the bile ducts or severe liver disease. However, it could be due to involvement of the stomach lining. Sometimes this is only found when the gastroenterologist does a biopsy of the stomach lining. However, there are of course a lot of other reasons for the symptoms that have nothing to do with sarcoidosis.
In terms of the liver tests, unless they are continually going up, or more then threefold the upper limits of normal, they will almost never lead to problems in the long run, or cause symptoms. Therefore, we almost always just leave those alone.
PF: My 34-year-old son has severe blood clots. There has been no medication tried that has successfully prevented them. He is presently on an injection called Arixtra® (fondaparinux). He has been to Mayo Clinic. He presently is a patient at National Jewish Health in Colorado, and also at the University of Colorado in Denver. I am wondering if anyone else has blood clots with sarcoidosis as his legs are full of them.
Kristin_Highland,_MD: Yes, there are two articles in the literature that describe this association. One of these reports actually came from National Jewish Health in Denver. (Jeffrey Swigris, DO is the first author.)
Cardiac Sarcoidosis Diagnosis
papayatina: I was diagnosed with sarcoidosis in my lungs over 30 years ago and it seemed to resolve. Is there a test that can tell if I still have it? Now I have atrial fibrillation (a-fib) and some chest pain, but I am negative for ischemia on stress echo. I want to know if I could have cardiac sarcoidosis. How can I find out if I do?
Kristin_Highland,_MD: In many patients with sarcoidosis, it can disappear without any specific treatment. Since your diagnosis of sarcoidosis was so long ago and supposedly resolved, it is somewhat unlikely that your cardiac symptoms are related. However, to check to see if you have sarcoidosis, it would not be unreasonable to have a chest x-ray (or CT) and pulmonary function tests. Please share with your cardiologist your history of sarcoidosis. A cardiac PET (positron emission tomography) scan or cardiac MRI can show changes consistent with sarcoidosis.
Kronos: I received a heart transplant on April 20, 2011 due to cardiac sarcoidosis. Is it likely the sarcoidosis will return to my transplanted heart? How can post-heart transplant biopsies be tested for sarcoidosis and how reliable are these tests?What type of post-heart transplant medicine should I be taking and at what doses?
Kristin_Highland,_MD: Possibly, it may return to your transplanted heart. Cardiac sarcoidosis can sometimes be difficult to measure by biopsy as it skips around. Your transplant cardiologist may want to get a cardiac MRI or PET. The good thing is that your antirejection medications also may treat sarcoidosis. Your transplant medications should be discussed with your transplant cardiologist.
Nfitz203: My husband was diagnosed with pulmonary sarcoidosis two years ago. He is a 35- year- old white male. We recently discovered, through an MRI that he has a sarcoidosis bone lesion on the spine in the back of his neck. He also has been diagnosed with a conduction issue with his heart, but his doctors do not think it is sarcoidosis related. His uncle had sarcoidosis in his heart and needed a heart transplant. Are there things we can do to prevent his sarcoidosis from spreading further (specifically to his heart) and prevent his lung condition from worsening over time?
Kristin_Highland,_MD: In regards to the bone findings, those are common in many patients with sarcoidosis and likely do not require specific management. In terms of the cardiac issue, there are several forms of cardiac sarcoidosis. Those that affect the conduction system (most common) and those that affect the function of the muscle itself (probably what his uncle had). Your husband should be seen by an electrophysiologist (cardiologist that specializes in rhythm) as we generally have a low threshold to put a defibrillator in sarcoid patients with conduction issues. A cardiac PET or MRI can often be useful to screen for cardiac involvement by sarcoidosis. If this seems to be present, then his sarcoid therapy would be more aggressive.
mia1953: What is the prognosis for cardiac sarcoidosis?
Daniel_Culver,_DO: The prognosis is much better than it was in the past. If it is found early, there is better than 90 percent long-term survival. Finding it early, finding more mild cases and the use of defibrillators have probably all contributed to the better prognosis. Markers of worse outcome include poor ejection fraction, poor exercise tolerance and high grade dysrhythmias (like ventricular tachycardia).
Lymph Node Sarcoidosis
theresag: I have had pulmonary sarcoidosis for the last six years that was confirmed via open lung biopsy. I believe that I also have sarcoidosis of the lymph glands in my neck under the jaw. I have unbearable pain there, and the gland continually goes up and down. I had an ultrasound of the right side of my neck. I was told that there is no solid mass and that the lymph nodes are not big enough, so a biopsy would be risky. The pain is driving me mad as it has been like this for several years. I am tired and have lost faith in doctors who seem to give me the flick off. This was also the case until a doctor eventually did a biopsy (lungs), although he said it was unlikely that I would have this rare disease. To everyone's surprise it did turn out to be sarcoidosis. What I would like to know is what to do now. If it is lymph node sarcoidosis, would the treatment be the same as that for pulmonary sarcoidosis? Most importantly, how do I get a doctor or specialist to listen?
Kristin_Highland,_MD: The treatment for lymph node sarcoidosis and pulmonary sarcoidosis is often the same. You may find a list of sarcoidosis experts in your area on the Foundation for Sarcoidosis Research website, www.stopsarcoidosis.org.
54realdeal: I have neurosarcoidosis. I have been taking 20 mg of methotrexate since January 2012 and I am doing well. My right knee is very painful and gets very stiff. Could this be from the sarcoidosis, maybe early arthritis or something else related? Suggestions on seeking treatment?
Kristin_Highland,_MD: Sarcoidosis can affect the joints, but methotrexate is often helpful for this. There are many other causes of knee pain. I would ask your provider to start with a knee x-ray and then if necessary get a knee MRI and/or referral to an orthopedic surgeon or rheumatologist. A local injection of steroids might provide you some relief.
live4g0d: I have sarcoidosis in my lungs and lymph nodes. I think it is in my spine as well because of the unbearable pain. They just found a spot on my brain as well. My doctor is in no rush to treat me, nor does he believe that the pain is sarcoidosis related. Is it in my best interest to come to Cleveland Clinic, or should I trust that my doctor knows what he is talking about?
Kristin_Highland,_MD: If there is a possibility of neurosarcoidosis (i.e., the spot on your brain), I would seek an expert consultation as this may require aggressive management.
Audiesue13: I have been diagnosed with sarcoidosis and have extreme spine and pelvic pain. My CT scan shows defined lytic lesions throughout spine and pelvis. Could this be neurosarcoidosis? I am multiple myeloma negative.
Daniel_Culver,_DO: The lytic lesions are probably bone sarcoidosis as opposed to neurosarcoidosis (involving the nervous system). Bone sarcoidosis does not always require treatment, but in your case it may be warranted. If there is any question about the possible of neurosarcoidosis, you should get an MRI of the brain and spine and/or a spinal tap (lumbar puncture).
drdebt: I can find virtually no research or information on treatment outcomes for osseous sarcoidosis. It all seems to relate to pulmonary sarcoidosis. I was recently diagnosed thru PET scan and bone biopsy, and prednisone if of no help. Is there a different treatment matrix for osseous sarcoidosis vs. pulmonary? And is the goal of the treatment strictly palliative, or is there reason to believe treatment (such as methotrexate and anti-TNF[tumor necrosis factor]) -a will reduce granulomas or stop further growth?
Kristin_Highland,_MD: Osseous sarcoidosis is often an incidental finding and does not need to be specifically treated. Methotrexate and the TNF (tumor necrosis factor)-alpha therapies would be the therapy of choice if osseous sarcoidosis does need to be treated.
kian17: I’ve had pulmonary sarcoidosis since 1994, which is stage 4. My x-rays have been unchanged for six years, but I've become more fatigued and feel more short of breath. Doctors blame it on being 50 lb overweight and tell me to lose the weight to feel better. How can I lose weight when I'm so fatigued and short of breath? Could the shortness of breath be caused by something else?
Kristin_Highland,_MD: You may consider being evaluated for pulmonary hypertension with an echocardiogram and perhaps a heart catheterization. Pulmonary rehabilitation can often help people with severe lung disease get active and improve their exercise tolerance in a safe way.
Colantuono : I was diagnosed with pulmonary sarcoidosis in 2008. I have had multiple hospitalizations. My question deals with sarcoidosis and the stomach. Using methotrexate, Imuran® (azathioprine) plus high doses of prednisone, my pulmonary symptoms are relieved at the present. I still require a nebulizer two to three times per day and oxygen therapy at night. My stomach and bowel habits have drastically changed with vomiting and loose watery stools, but my physicians will not consider a link to sarcoidosis because it is rare. I have lost an extreme amount of weight and I am considered a failure to thrive. Can a test rule out the possibility in my gastric system?
Daniel_Culver,_DO: I would consider having someone do some endoscopic biopsies to look for sarcoidosis involvement. The medications could also be causing these issues. If they are the culprit, there are other options available to try instead, such as TNF (tumor necrosis factor) blockers.
Lookgoodfeelbad: I was diagnosed with sarcoidosis in 2003. In September I started experiencing issues with my skin. Can you provide more information on plaque sarcoidosis? What method can I use after the flare up to clear the marks left on my skin?
Kristin_Highland,_MD: Skin sarcoidosis can be difficult to treat and often requires some of our stronger medications (i.e. Remicade® [infliximab]). The post-inflammatory pigmentation often takes awhile to fade, but can be permanent. In that case, you may consider consulting a dermatologist for recommendations on make-up that provides more coverage than the typical make-up that you can buy in a store.
UpstateNYGirl: I was diagnosed with sarcoidosis two years ago. I have bilateral node involvement and my lungs are clear. In the past year I have been having one to two short pre-syncope episodes per month. Sometimes the episodes wipe me out for a day. I have been through significant testing that has ruled out heart, ears and brain. What type of tests would you recommend? I'm so scared its something related to sarcoidosis that my local doctors don't have the experience or knowledge to pinpoint. Also, do you recommend some kind of follow-up testing annually to track sarcoidosis outside of breathing tests?
Daniel_Culver,_DO: You need to be seen by a cardiologist that specializes in heart rhythm. You many need an electrophysiologic testing. For a list of sarcoid specialists, go to the Foundation for Sarcoidosis Research website: www.stopsarcoidosis.org
AstroLady: Is there a blood test that can diagnose sarcoidosis?
Kristin_Highland,_MD: ACE levels are sometimes elevated in sarcoidosis, but not very sensitive (i.e., can also be normal). A biopsy is often required.
HWLady: I recently had a positive ANA. Can this be caused by sarcoidosis?
Kristin_Highland,_MD: No. Sarcoidosis can coexist with autoimmune (rheumatologic) disease.
wt628: If I have an appointment at Cleveland Clinic, will I be seen and tested by a team of all the physicians in the Sarcoidosis Center of Excellence, including pulmonary, cardiac, neurology and rheumatology? I have diagnosis-confirmed systemic sarcoidosis, involving the parotid, lymph, lung and long bone. The only biopsy done was with the parotid. No testing was done on the lungs which have atypical round lesions but no hilar involvement at last CT. I have various symptoms and paroxysmal supraventricular tachycardia (PSVT) along with palpitations.
Daniel_Culver,_DO: Many of the larger sarcoidosis clinics have specialists available with an interest and expertise in various organ systems, such as cardiac, dermatology, etc. However, it is sometimes useful to be prudent about how many specialists get involved. Whether to see a specialist might depend on the specific situation, the manifestations, and the comfort level of the sarcoidosis ‘quarterback’ at that center. To my way of thinking, that is a more cost-effective, simpler and direct way to deal with the problems.
Our usual practice at Cleveland Clinic is to try to pre-schedule really salient or vexing organs with their specific specialists and then add others on the fly if needed.
In your case, the PSVT may or may not be relate to sarcoidosis. I would think that some sort of cardiac imaging study and a visit with an EP (electrophysiology) doctor at the same time might be at least useful.
Irish1961: What is significance of ACE levels? I started with sarcoidosis in my lungs. Six months after treatment with prednisone, I had significant pain and inflammation in my feet. An MRI indicated either sarcoidosis or myeloma. Now I am being treated with Plaquenil® (hydroxychloroquine) 200 mg twice daily, methotrexate12.5 mg subcutaneous injection, and 3 mg prednisone (in the process of weaning down). I tried to drop a dose of Plaquenil® (hydroxychloroquine) and cut the methotrexate dose in half, but the Joint pain returned and I had increased fatigue. A repeat MRI looked good prior to my dropping the dosage of medications. I have no inflammation in my feet. What is best test to check for active sarcoidosis?
Daniel_Culver,_DO: ACE levels are elevated in some people with sarcoidosis, but not all. It can be used as a biomarker (something to follow) in organs that cannot easily be monitored with conventional testing. However, if the ACE level is not elevated to begin with, it is not helpful. There is no blood test that can really be relied on with a high degree of confidence. Some investigators look at soluble interleukin-2. Importantly, the symptoms that you are having may or may not be related to sarcoidosis activity, but could be related to prior damage. Sometimes, the answer is not to treat sarcoidosis, but to attempt to manage the symptoms. Another way to try to differentiate activity is a trial of moderate dose steroids. Improvement after steroids might suggest sarcoid activity and would argue for more aggressive immunosuppression.
Sarcsick: Is it necessary to continue prednisone? I already have been on it for three non-stop years. I no longer have pulmonary symptoms, but I still have a high ACE Level-84.
Daniel_Culver,_DO: Please see other questions about the ACE level in this web chat. As a short answer, stop measuring it!
Jollie: My nephrologist suspects sarcoidosis due to very high hypercalciuria and very high vitamin D (1,125-D). He says nothing else causes high vitamin D (1,25-D). I have had pulmonary function tests, which were normal. I have swollen lymph nodes in both arm pits. Do I need to pursue sarcoidosis further? What do you think about a parotid biopsy for diagnosis?
Daniel_Culver,_DO: I agree with your nephrologists—this is most likely sarcoidosis. I am not sure that some infections wouldn't also look similar, so a biopsy seems warranted to me. It seems like chest imaging would be useful. Lymph nodes in the arms pits are not very common for sarcoidosis. I am very skeptical about the diagnosis unless there are also enlarged lymph nodes in the chest.
Jollie: Specialists in sarcoidosis are very hard to find in my area. My nephrologist is treating me for high hypercalciuria. He suspects sarcoidosis because of very high vitamin D (1,25-D) level. I also have enlarged lymph nodes in both armpits. My chest x-ray is negative and my pulmonary function tests are normal. I just had emergency exploratory surgery for an intestinal blockage, but no known cause was identified. Is sarcoidosis something I should continue to pursue?
Kristin_Highland,_MD: Yes. Consider getting a lymph node biopsy. The Federation of Sarcoidosis Research website, www.stopsarcoidosis.org, has a list of sarcoidosis experts that may be in your area.
h2ctcjmb: I'm a 47-year-old black woman who was diagnosed with sarcoidosis in 2010 after my PET scan lit up like a Christmas tree. A cardiac surgeon also did a biopsy of one of my lymph node, but it had not affected my lungs or heart. However, it did enlarge my spleen and every lymph node in my body contains inflammation. My question is that my doctors do not seem worried about the diagnosis and have not ordered any follow up with additional testing since my original diagnosis. Should I have follow-up testing to see if it has spread to other organs?
Daniel_Culver,_DO: This is a common situation. Generally I agree with the strategy of your doctors that PET positive result alone is not a indication to treat. I usually tell patients, ‘If it's not causing a problem, it's probably not going to cause a problem.’ In other words, I would need to see some symptoms or a threat to the function of an organ to be interested in treating. Routine monitoring without fancy testing is usually sufficient for those purposes.
sarcx2: When sarcoidosis affects the salivary glands, why do biopsies sometimes not always show sarcoidosis, but just chronic inflammation?
Daniel_Culver,_DO: Sarcoidosis can be a ‘skip lesion’ meaning that the area biopsied might not actually be the exact area involved. That is one of the challenges in sarcoidosis.
Sarcoidosis vs Cancer
maryperdarryl: I have had sarcoidosis of the lung for about 10 years. It is considered to be active, but I am not on any treatment. I am not having any symptoms other than shortness of breath upon exertion. I am yes somewhat out of shape at five foot and five inches tall and weighing 110.8 lbs. I believe I need to tone up, and I am starting to swim. My platelets are always high. Upon last checkup two weeks ago, my platelets were 803,000 with a normal bone marrow biopsy. Have you seen this before? Having been a smoker, how can you distinguish lymphadenopathy in the lung as sarcoidosis vs lung cancer?
Daniel_Culver,_DO: Sometimes sarcoidosis causes low platelets, but unless your spleen was removed, I cannot fathom how it would cause high platelets. Usually lung cancer and sarcoidosis can be suspected as different entities based on the CT scan appearance. If there is a really a difficulty, other than a biopsy, sometimes we try a short course of steroids under the idea that cancer would not shrink with steroids unless it is lymphoma.
Med123: What are the similarities and differences between sarcoidosis and lymphoma? Please explain the standard and novel new approaches for treating sarcoidosis. How common is it for lymphoma (diffused large B-cell) to develop from sarcoidosis, which is what happened to my mother?
Kristin_Highland,_MD: Differentiating between sarcoidosis and lymphoma can be very challenging as presentations can be very similar. It is extremely important as sarcoidosis treatment can make lymphoma worse. If there is any question, an entire lymph node needs to be removed and sent for full biopsy analysis.
Livertx: Does breast cancer sometimes get misdiagnosed when it is sarcoidosis?
Kristin_Highland,_MD: Breast sarcoidosis can be a real problem when getting mammograms, MRIs and PET scans. The only way to know for sure is to have a biopsy and to look at tissue under the microscope. To make matters more complicated, cancer can cause a sarcoidosis-like reaction. If there is any question, have a biopsy.
Sarcoidosis with Other Medical Disorders
andyisagirl: Hi, I am 33 years old and have systemic sarcoidosis in many organs, including my heart (defibrillator and pacemaker implanted in January 2013), as well as autonomic and small fiber neuropathy. I have failed long-term, high-dose prednisone, methotrexate, Remicade® (infliximab), and Arava® (leflunomide). I am currently on Imuran® (azathioprine)100 mg and I have been getting 40 grams of 10 percent intravenous immunoglobulin (IVIG) every three weeks for four years now. I am five feet tall and weigh 114 lbs. I lost 140 lbs from sarcoidosis. It helps some, but I am starting to have a lot of continuous pain, insomnia and fatigue. What options do you feel I still have left to try? What do you think about stem cell transplant for treating sarcoidosis?
Kristin_Highland,_MD: If your main issues are fatigue, pain and insomnia, this may not actually represent active sarcoidosis, but more a consequence of a history of sarcoidosis. Many patients with sarcoidosis can have sleep disorders and fibromyalgia at the same time. I would seek a consultation by a sleep specialist and also a consultation with a pain specialist to come up with a better pain regimen. Believe it or not, getting on an exercise regimen might also be helpful. Stem cell transplantation is still very experimental and with significant risks. I suspect it would not be of benefit.
mzclown: Sarcoidosis has become a ‘round robin’ for me. The pain and stress from sarcoidosis affect my blood sugar and diabetes. My one remaining kidney is at chronic kidney disease stage 3, and my liver is affected, too. This makes my blood pressure rise, and makes the pain and stress rise. This then makes the sarcoidosis worse. This goes round and round. All of the stress is causing more symptoms in my body and various conditions. Where and how do I grab hold, stop the progression and deal with all of the effects on my body?
Kristin_Highland,_MD: Talk to your primary care provider about getting help with your depression and anxiety.
mzclown: My 14-year battle with sarcoidosis since its diagnosis has been met along the way with doctors saying, ‘I don't know.’ Now I feel as if Dr. Highland didn't see the depth of my problem. I am already being treated for stress and depression. I have had renal failure and a heart attack, lost one kidney, contracted two strains of MRSA (methicillin-resistant Streptococcus aureus) and then necrotizing fasciitis in the sarcoidosis skin lesions. My battle with sarcoidosis is complicated. As I asked, where do I attempt to stop the merry-go-round? Each thing that happens causes damage and a flare of inflammation, as well as a rise in blood pressure, complications and pain. The pain is everyday, often at level eight and above for hours with no relief with peripheral neuropathy in my legs, bad knee joints and skin sarcoidosis. Do I start with trying to ease the pain? Do I start with trying to bring the inflammation down? Right now I'm attempting to ease symptoms through diet.
Kristin_Highland,_MD: I would have the nodules in your breast tissue evaluated. They may be a consequence of sarcoidosis, and if not bothering you would not require specific therapy. However, breast cancer also can cause breast nodules and should be excluded. Lymph nodes related to sarcoidosis also do not require specific therapy unless bothersome. You may want to confirm that these lymph nodes are related to sarcoidosis and not something else.
Cansurvive: I was diagnosed with cancer in 2009 at the age of 33 years old. I then was diagnosed with sarcoidosis, which initially was thought to be more cancer until it was biopsied in my lungs. I am in remission from the cancer, but don't know which health issues I have are side effects from all the treatments and what are results of the sarcoidosis. I am sick and in pain all of the time. I also have an awful skin condition that no dermatologist has been able to help me with, and I am just miserable. I have spent so much money on medications and doctors but nothing and no one has been able to help, as no one I have been to knows much about sarcoidosis (for the record I have not been to Cleveland Clinic). I cannot function half of the days of the month and need some help. I have no medical insurance which further complicates the situation. How can I get some help? Or at least some answers without going further into debt?
Kristin_Highland,_MD: There is some association that has been reported between cancer and sarcoidosis. It is difficult to know the cause of your symptoms. Cleveland Clinic does have a Patient Financial Advocate available who you can contact, as we do see indigent patients within a certain geographical area.
Kimmmy: I have sarcoidosis and seronegative rheumatoid arthritis. Is there a way to determine which one is causing the flare?
Kristin_Highland,_MD: It can be difficult. Sometimes there are radiographic findings that would suggest one disease over the other. Nevertheless, the approach to therapy is very similar for each disease.
jamfam: Are you aware of any validated studies connecting sarcoidosis and lung cancer?
Daniel_Culver,_DO: No, there are not. Generally, they run in different directions, since more than 90 percent of lung cancer is related to smoking, whereas smoking seems to be somewhat protective from the development of sarcoidosis.
Sarcoidosis Progression and Stage
5stardrywall: How can I determine the stage of my sarcoidosis? I was diagnosed with sarcoidosis in 2003. What factors determine my chances of needing a lung transplant?
Kristin_Highland,_MD: Sarcoidosis stage is defined by chest x-ray. However, the severity of sarcoidosis can be determined by organ involvement. In terms of lung transplantation, this is determined by a ‘lung score’ that depends on your lung function, exercise tolerance and oxygen requirement. There are many requirements to qualify for lung transplantation that depend on your weight and other medical problems.
Spartangirl: If your high resolution CT scan of chest shows progression of sarcoidosis in the lungs with a negative cytology with bronchoscopy and washings, is it necessary to add to the weekly dose of methotrexate if the pulmonary function test is normal?
Kristin_Highland,_MD: It may not always be necessary to be on therapy despite radiographic findings if you are asymptomatic and pulmonary function testing is normal.
alliweb1: I have sarcoidosis in my lungs and lymph nodes that was diagnosed two years ago. Last week I had a CAT scan and it showed spots on my spleen. I also just had an EGD (esophagoscopy gastroscopy duodenoscopy) and it showed inflammation in my stomach—which the gastrointestinal doctor said could be sarcoma. They are both causing me pain. It sounds to me like the sarcoidosis is spreading, but I'm not a doctor. Do I go see my sarcoidosis specialist at Cleveland Clinic or whom about this matter? And, would they need to take a more aggressive approach in helping it not to spread or keeping down the inflammation? I take a lot of medications but only Plaquenil® (hydroxychloroquine), an inhaler and pain medications for the sarcoidosis.
Kristin_Highland,_MD: If you already have a Cleveland Clinic sarcoidosis specialist, it would be a good idea to review all of these findings with him or her.
Sarcoidosis and Organ Transplant
santilla: In February 2010, I had a cervical fusion of my C 4,5 and 6 vertebrae to alleviate pressure on my spine, and resolve numbness in my hands, arms, legs and feet. The numbness was resolved, however, roughly one and one half year later. I developed a sarcoid lesion in my spinal cord at the C5 level. Is it remotely possible that the cadaver bone used in my fusion was somehow the cause of my sarcoidosis? Can bone carry sarcoidosis and transfer it to the healthy recipient?
Kristin_Highland,_MD: We don't believe this has been described previously from bone. However, sarcoidosis has been documented to be transmitted after other types of transplantation, including lung, heart and bone marrow.
Heredity of Sarcoidosis
Summertime: My mother had sarcoidosis when she was in her late 30s. Is this disease hereditary? What should I be looking out for? Are there steps that you can take to reduce your chances of getting it? Does sarcoidosis increase your chances for other disease such as cancer?
Kristin_Highland,_MD: Sarcoidosis can run in families. The pulmonary manifestations of sarcoidosis are the most common, but sarcoidosis can affect any organ system of the body. Therefore, if you develop a new symptom, I would let your provider know about your family history so that he or she can keep sarcoidosis in his or her differential diagnosis. There is nothing that can specifically be done to prevent sarcoidosis. There has been some recent interest in sarcoidosis and cancers coexisting in the same patient, but it is not a specific risk factor for cancer.
Spartangirl: Can you use Plaquenil® (hydroxychloroquine) with a family history of macular degeneration?
Kristin_Highland,_MD: Yes. Just get routine eye examinations every six to 12 months.
celticroots: I’m connecting with you from Ireland. I have lupus pernio that is active. My methotrexate has been increased to 15 mg and Plaquenil® (hydroxychloroquine) was started at 200 mg twice per day. Some literature recommends eye tests, but that has not been suggested here.
Kristin_Highland,_MD: The American College of Rheumatology recommends yearly eye examinations for anyone on Plaquenil®. Sarcoidosis can affect the eye and thus we typically recommend yearly eye examinations for that reason as well.
bradshaw: Is there any new treatment beside Plaquenil® (hydroxychloroquine) and gabapentin?
Kristin_Highland,_MD: There are many therapies available for sarcoidosis. We choose which therapy depending upon the specific sarcoidosis issue.
megirn: What is your opinion of transitioning from prednisone to methotrexate? Also, for neurologic pain, Cymbalta® seems to help, but insurance only covers one per day—even though my doctor has prescribed this medication two times per day. Can you recommend any alternative for the nerve pain?
Kristin_Highland,_MD: We typically recommend that patients with sarcoidosis get an EKG to look for any conduction delays that might be an indicator of cardiac sarcoidosis. We also recommend a yearly eye examination and yearly labs to screen for involvement in the bone marrow, kidney and liver, and also to test calcium. If there is pulmonary involvement, at least yearly pulmonary function tests should also be performed.
monkeymom: I have multi-organ chronic sarcoidosis. My body is constantly swollen and filled with inflammation. My throat swells to the point that it appears as if I don't have a neck and my vocal cords are affected too. I can feel the inflammation in my neck along my jaw, I look like a hamster holding food in its pockets. Do you have any advice on how to get rid of the inflammation?
Kristin_Highland,_MD: It sounds like you need to be on immunosuppressive therapy. Steroids are often our first-line treatment, but there are a number of other therapies commonly used in sarcoidosis. You may want to find a sarcoidosis expert in your area. The Federation of Sarcoidosis Research website, www.stopsarcoidosis.org, might be useful in finding a provider in your area.
BBye: I was diagnosed with sarcoidosis four years ago, first of the skin and then one year later in the joints. Two years later it affected the lungs and other sites. About two years ago I was treated with drip chemotherapy with Cytoxan® (cyclophosphamide). The sarcoidosis is active again, but my insurance company will not allow this treatment. What is the best treatment for sarcoidosis?
Kristin_Highland,_MD: Recommendations on therapy depend somewhat on organ involvement. Our ‘best’ or more aggressive therapy is Remicade® (infliximab), but there are others. Sometimes financial help can be provided by pharmaceutical companies.
bear5: I am a 72-year-old white male with sarcoidosis and inflammatory arthritis for the past four years. I now have moderate pulmonary fibrosis and I am on and off supplemental oxygen, becoming more out of breath and experiencing a consistent cough. I have been on methotrexate and prednisone, and it is no longer effective. My insurance company has turned me down for intravenous infusions of Remicade® (infliximab), for which I have filed an appeal. However, I also do not have a spleen due to war injuries many years ago, so I am also concerned about lowering my immune system even further— even if I am approved for Remicade®.
Daniel_Culver,_DO: It may be important to consider with your doctor whether you have active versus burned-out disease. You may also consider looking for whether there is pulmonary hypertension (high blood pressures in the lung) associated with sarcoidosis that is causing your shortness of breath.
There are some other options to consider short of Remicade® (infliximab). With your spleen missing, you are correct about the risk of infection. However, I also think that I would not absolutely 100 percent exclude infliximab if that is the only option.
Medication Side Effects
Lampvb16: I have been diagnosed with sarcoidosis confirmed by a video-assisted thoracic (VATS) procedure. My problem is finding someone to manage my condition. I have not been able to find a physician in my area to deal with it in the bones. My problems include pain, aches, fatigue and now depression from feeling so horrible. The methotrexate and prednisone regime seemed to cause so many other problems. In fact, now I am acquiring myopathy brought on by the steroids. I can barely walk the stairs. Up until this time I was a perfect bill of health for a 54 year old. I did not take any medicine for anything and my BMI was good. This year I gained 25 lbs.
Kristin_Highland,_MD: Visit the website of the Federation of Sarcoidosis Research, www.stopsarcoidosis.org, to find a sarcoidosis expert in your area.
gpdust: My husband just started treatment for sarcoidosis, which it was diagnosed by process of elimination. Three weeks into high doses of prednisone, he has blurry vision in both eyes— yet they say not to stop or replace the steroid. Do you have any advice?
Daniel_Culver,_DO: Steroids can cause many side effects for the eyes, most commonly glaucoma (high pressures in the eye) and cataracts. Cataracts generally take awhile to develop, usually longer than a few weeks. However, it sounds like you should at least have the pressures in your eye checked. And of course, there are options besides steroids. If you are being told there are no other options, you may consider getting a second opinion.
dorih: My son is receiving methotrexate and 10 mg prednisone for treatment of sarcoidosis for one year. What should he do to lessen the terrible side effects including, swelling, stretch marks and acne? He had the worst case Children’s Hospital of Pittsburgh has ever seen.
Kristin_Highland,_MD: The side-effects that you are describing are most likely related to prednisone. You may discuss with his physician to titrate up (increase) his methotrexate (if possible) vs. a consideration to change from an oral to a subcutaneous route of administration to improve bioavailability and thus effectiveness of the methotrexate. There may also be the possibility of adding another agent so that the prednisone can be weaned down or tapered off.
gpdust: If steroids are presenting a problem for the patient to handle, what other drug alternatives are there for treating sarcoidosis?
Daniel_Culver,_DO: This is a topic that is near and dear to me. I believe we probably overuse steroids, but there are several alternatives. Each has advantages and disadvantages, differing expenses and risks, and differing times to work well. We use a good bit of methotrexate and/or Arava® (leflunomide) in The Sarcoidosis Center of Excellence at Cleveland Clinic.
Long-term Medication Use
mabel155: I was diagnosed with sarcoidosis in April 2012. My lungs and my kidneys were affected. I was put on a strict diet for my kidneys, and prescribed deflazacort steroids 45 mg at that time. In August it was reduced to 30 mg, and in November it was reduced to 15 mg. I have returned to feeling normal, but I began to develop small red spots on my arms and legs. The redness has increased to large rashes or blotches that appear anywhere on my body, but not my face. Is this a reaction to the long term use of steroids? Friends and relatives are concerned about me being on steroids for over a year. Should I be concerned?
Kristin_Highland,_MD: Steroids are not without side effects. They can cause eye problems (such as cataracts and glaucoma), are a risk factor for diabetes and obesity, and can also cause thinning of the bones (osteoporosis). In general, patients should be on the lowest feasible dose of steroids possible and, at times, other immunosuppressive therapy may need to be added to allow for reduction in steroids. Please keep in mind that steroids cannot be stopped abruptly if you have taken them chronically as they also place you at risk for adrenal insufficiency and an unsafe drop in blood pressure. Steroids can cause changes in the skin as well, but if might be safe to see a dermatologist to make sure this is not anything else (like skin sarcoidosis).
vcog: I have had sarcoidosis for 30 years—29 years I have been treated with prednisone. I am currently on a maintenance dose of 10 mg per day. As a result of my prolonged use of prednisone, I am also a diabetic, have high blood pressure and high cholesterol, which are all pretty much under control. What could cause me to have low magnesium and a rapid heart beat if my control is good? My vitamin D level is fine.
Kristin_Highland,_MD: There are many causes of a rapid heart beat. You should have your provider do an EKG to better determine your heart rhythm to determine whether further work-up is indicated. Magnesium can be low due to a loss in the GI (gastrointestinal) or renal (kidney) tract. This is probably unrelated to your sarcoidosis and could be rectified with a supplement.
smiller: I currently have mostly neurologic involvement with sarcoidosis and I am on Remicade® (infliximab) and CellCept® (mycophenolate mofetil) for management. I have had four infusions (600 mg) to date of Remicade® and see little— if any—improvement. I am worried about the potential side effects. How long should I give the infusions to work before deciding they are not worth the risk and just get off the Remicade®?
Kristin_Highland,_MD: Typically, we would see some improvement within about six doses of Remicade®, at a dose of 5 mg/kg. Sometimes radiographic (MRI) improvement precedes clinical improvement. We often treat patients with long-term Remicade® if necessary, if there is a response.
54realdeal: How long should I stay on methotrexate?
Kristin_Highland,_MD: You can stay on methotrexate indefinitely. Your laboratory values for blood count and liver function tests should be monitored at regular intervals.
KJr: When my husband was 62 years old in 2005, he was diagnosed cardiac sarcoidosis presenting with ventricular tachycardia. An ICD (implantable cardioverter defibrillator) was implanted. Ischemic heart disease was excluded. The subsequent development and biopsy of hilar lymph nodes confirmed sarcoidosis. He was treated with steroids and methotrexate. Hi follow-up PET scans have showed complete clearance of the pulmonary and splenic lesions. There is a scar remnant in the heart and no evidence of active disease. He had one episode of ventricular tachycardia in 2008, and his ICD delivered a shock. He remains asymptomatic and recent EF (ejection fraction) is 49 percent. His other medical problems are hypertension, diabetes mellitus and hypothyroidism, but all are under good control.
My question is regarding methotrexate therapy. He has been on 10 mg once a week along with folate since 2007. His biochemical and hematological parameters have been regularly monitored and are normal. His recent CT chest shows evidence of fatty liver (with upper abdominal slices of CT chest). Could this fatty liver be due to methotrexate?
The medical literature recommends liver biopsy after an accumulated dose of 1g of methotrexate. He has never had a liver biopsy and his total methotrexate dose is now more than 3 g. Would a liver biopsy be indicated in the present scenario?
Methotrexate would have to be stopped if fatty liver is proved or suspected. What would be the other alternative? Is stopping immunosuppressive treatment and observation, a prudent alternative? In light of his cardiac sarcoidosis, would it not be risky to stop such treatment? I’m afraid that recurrence of the disease may worsen his cardiac functions and lead to cardiomyopathy. Is not cardiac sarcoidosis and indication for lifelong immunosuppressive therapy? He is on anti-arrhythmic treatment and ICD downloads have not shown any untoward episodes.
Kristin_Highland,_MD: I think the safest approach would be for him to see consultation with a gastroenterologist for consideration of liver biopsy since he has been on more than 3 g of methotrexate. I would not expect ‘fatty liver’ to be the appearance of methotrexate liver disease, but this may be related to his diabetes. If there is methotrexate-related liver injury, there are other options for immunosuppression. With his history of cardiac sarcoidosis, I agree that he likely may need lifelong therapy of some sort to keep him in remission.
peggyDA1: I have stage 3 lung sarcoidosis. I am completing a six-month prednisone program, and I am now down to 7.5 milligrams. My lungs are clearer. I will need to make decision for on-going treatment. I am a 57-year-old, otherwise healthy, woman. I am interested to know other patients’ comments regarding the use of methotrexate vs low doses of prednisone. Or should I do nothing and hope to remain in remission?
What is the best means of dealing with the fatigue associated with sarcoidosis? What is the impact of stress on sarcoidosis patients?
Daniel_Culver,_DO: In general, I think it is useful to try to taper the steroids at some point in time to see if there is still a need for therapy. The alternative is to throw your hands up in the air and say, ‘I’m going to take medications forever.’ The success of tapering depends on the duration of the sarcoidosis and some other factors. However, a large percentage of patients—even with fairly chronic disease—can successfully come off steroids if they try it. I would make your sarcoidosis prove it needs ongoing therapy. Then, I might try again in the future.
In terms of fatigue, it is very common. I like to recommend exercise with walking 30 minutes per day as a first approach, and consider whether there is sleep apnea or depression as well. Exercise is hard—and you may not want to do it and it can be painful, but it pays dividends as much as any medication, in my opinion, in the long run.
Stress probably makes sarcoidosis worse. Find ways to reduce it if you can. Simplify your life if possible.
Garv: My neurologist states that as long as there are no lesions in brain or spinal cord you should wean treatment of prednisone and methotrexate. You don't continue just because significant symptoms remain.
Daniel_Culver,_DO: He is right. Some of your difficulty may be due to prior damage. If the lesions are now gone, it might be worth weaning therapy, but you will need to be followed very carefully for worsening of symptoms.
Sarcoidosis and Vitamin D
es: I take prednisone for sarcoidosis which I believe causes my vitamin D level to be extremely low. I would take a Vitamin D supplement, but I have had a history of kidney stones, which I think would be aggravated by the vitamin D supplement. Any suggestions?
Kristin_Highland,_MD: Many patients with sarcoidosis have a low vitamin D level (25-hydroxy vitamin D).However, if the active form is checked (1,25) it is often elevated or normal. I would have your provider check this before beginning a vitamin D supplement. I also would be hesitant given your history of stones. A 24-hour urine calcium would also be a helpful value to have before making a decision regarding vitamin D supplementation.
ValJo1958: I have sarcoidosis and my vitamin D level bottomed out. I take 5,000 IU daily per doctor’s orders after taking a prescription of vitamin D to bring it up. I have read that vitamin D reacts differently with sarcoidosis. I had an emergency department doctor tell me that I was vitamin D toxic at one time. I faxed my primary care physician the information that I read and got no response. Where do I go from here?
Kristin_Highland,_MD: Please ask your doctor to check a 1,25 vitamin D level. Patients with sarcoidosis often have a low 25-dihydroxyvitamin D level, which is the measurement that is most commonly checked, but a normal or high vitamin D (1,25-D), which is the active form. If your 1,25 vitamin D level is normal, I would not take a supplement. The granuloma, which is the pathologic lesion in sarcoidosis, is responsible for converting vitamin D to the active vitamin D (1,25-D) form. Thus, patients with sarcoidosis are at risk of vitamin D toxicity, renal stones, etc.. Some actually believe that vitamin D can cause sarcoidosis flares.
Muffie7845:I found out I had sarcoidosis when I was 44 years old and I am 56 years old now. At the time the disease was active. I was not able to tolerate prednisone. I only took it for one month, then it went untreated. The last few times I had it check, it was inactive and scar tissue has settled in. I don't notice much activity with the exception of sinus, allergies and hay fever. It is something I fight with daily and I have problems sleeping every night. Since I don't tolerate strong prescription medications, I would be interested in something all natural to treat this disease. Please advise if there is anything safe I could take for it when and if it flares back up again.
Kristin_Highland,_MD: I am not aware of any homeopathic agents to treat sarcoidosis. Regarding your sinuses, try doing sinus rinses (neti pot or squirt bottle) with saline. Consider adding two drops of baby shampoo to the mixture. That might help with sinus congesting and crusting. A nasal steroid spray can also be helpful.
Hhm: What is your opinion on adding naturalist treatments that reduce inflammation, namely turmeric (tea or pills), such as in Kapparest™. Also, what about proteolytic enzymes to reduce fibrosis?
Kristin_Highland,_MD: There is no data for these agents and sarcoidosis. There is some data on turmeric as an anti-fibrotic, but this is mainly animal data. The problem with supplements is that they are not regulated by the government. There may also be significant drug-to-drug interactions, so if you decide to take these, I would discuss it further with your pharmacist or provider.
sckw: Will diet or nutrition have an impact on chronic sarcoidosis?
It is unknown at this time.
Melliepeas: Can an anti-inflammatory diet help prevent or mediate the spread of sarcoidosis?
Kristin_Highland,_MD: It is unknown.
sckw: Are there specific vitamins and mineral supplements recommended for chronic sarcoidosis?
Kristin_Highland,_MD: No. However, flares have been associated with vitamin D supplementation so vitamin D should be avoided in sarcoidosis patients with high calcium and renal stones.
Clode: I have been diagnosed with a stage 1 sarcoidosis. Only my lungs have granulomas. Can I practice scuba diving in shallow water?
sal246: Can aerobic exercise lessen the effect of lung scarring?
Daniel_Culver,_DO: No, but it can improve your exercise tolerance and overall general health and, thus, your quality of life. Keep exercising!
Clode: My practitioner told me that my lung granulomas never disappear. However, I see the opposite on your website. What is the exact situation? Is there a chance mine will disappear? I was diagnosed with stage sarcoidosis last week.
Yes, there is a chance that sarcoidosis can remit spontaneously.
SydneyperBasil: Is there any cure for sarcoidosis?
No. However, in a number of patients, sarcoidosis can disappear as mysteriously as it appears.
gpdust: Is it typical that sarcoidosis goes into remission, but can reappear at any time? Are there specific triggers to the reappearance?
I am just starting treatment for sarcoidosis and have started on 40 mg of prednisone and 100 mg of dapsone per day. I was first on Bactrim® (sulfamethoxazole and trimethoprim), and they switched to the dapsone as I started to experience blurred vision in the right eye. I am getting a referral to an ophthalmologist. Is this unusual?
Kristin_Highland,_MD: Many people with sarcoidosis do go in to remission. If remission has lasted for at least three years, recurrence is very rare. Your eye symptoms could possibly be related to sarcoidosis versus medication toxicity to prednisone or dapsone. I agree with the need to have an ophthalmologic evaluation. Everyone with sarcoidosis should see an eye doctor on a yearly basis.
TinMan: I was diagnosed in 2010 with lung, spleen and heart sarcoidosis. After receiving an ICD (implantable cardioverter-defibrillator) and a number of shocks, I have had two ablation surgeries. Originally I was told that I am probably not a candidate for remission because of the depth of the sarcoid evolvement—although remission is always a guess.
Recently, however, a PET scan showed no active sarcoidosis. So, as I very slowly begin to reduce my prednisone (with my goal being around 10 mg over time, and I am currently at 17.5 mg), am I any more likely to be headed toward remission, or is the PET scan not an indicator?
Daniel_Culver,_DO: This question is about predicting chronicity of sarcoidosis and about PET scanning. The presence of cardiac disease is a marker that the disease is likely to be chronic, but not an absolute indicator. Most patients followed for longer periods of time at large centers do not have progressive or treatment-requiring disease, even if they have persistent disease. Having cardiac disease makes the chance for spontaneous remission low. There are no modern studies that assess what the exact number is. However, I can tell you that our experience is that people without a lot of damage to their heart eventually do ‘cool off’ and not require therapy with time. How long that is remains difficult to estimate, but I agree that a dedicated cardiac PET with a radiologist who can read it well can be a very useful tool. If your LV ejection fraction is preserved and you have an ICD, I would definitely try to back off therapy. Also, remember that changes in cardiac sarcoidosis are very slow. It may require six to 12 months or longer for it to reappear or to respond to therapy.
Lookgoodfeelbad: What steps can I take to apply for disability insurance having sarcoidosis?
Disability is usually determined by organ impairment. There is a formal disability process that is required. I would begin by contacting your Medicare and disability office for the paperwork.
saniya1983: I want to come to Cleveland Clinic for a second opinion from Johns Hopkins Hospital, but I'm so scared about the stress related to all the testing and anxiety that comes with it—especially since I am at the flare up stage right now and doctors are trying to stabilize me. Any words of wisdom?
Discuss your stress with your primary care provider. You may benefit from an anti-anxiety drug during this period of time.
Concerning a second opinion, please call the Sarcoidosis Center of Excellence at Cleveland Clinic at 216.444.3613 or toll-free 866.783.3679. We would be happy to see you.
Live4g0d: I am searching for one specific doctor to go to handle all of my sarcoidosis needs. I have it in the lungs, lymph nodes and now my brain.
Daniel_Culver,_DO: You are welcome to make an appointment with Dr. Culver or Dr. Highland. Please call The Sarcoidosis Center of Excellence at 216.444.3613 or call toll-free at 866.783.3679. You can also visit us online at www.clevelandclinic.org/sarcoidosis. We would be happy to see you here.
naturfriend: Please refer me to a sarcoidosis specialist in Pinellas County, Florida
(includes Tampa, St. Petersburg and Clearwater area)
Please visit the Federation of Sarcoidosis Research website at www.stopsarcoidosis.org to find a sarcoidosis expert in your area.
Research and New Therapy
Sarcsick: Are there any current trials available for sarcoidosis?
Daniel_Culver,_DO: There are a few, including a trial of a novel therapy for chronic pulmonary sarcoidosis using an infused medication sponsored by Pfizer pharmaceuticals.
I believe there are also ongoing NIH (National Institutes of Health) trials for sarcoidosis using statins (anticholesterol medications), and I believe there is a National Jewish Health (in Denver)-sponsored trial using an anti-oxidant, NAC (N-acetylcysteine).
I may be missing some other sarcoidosis trials here, but I am aware of other trials that are in the works. You can find out what is happening by going to the Foundation for Sarcoidosis research website at www.stopsarcoidosis.org and search for clinical trials.
As a general plea, it would be great if the sarcoidosis community can participate as much as possible in all of the available trials. If we want new therapies, that means we want pharmaceutical companies to be interested in our disease. If we are seen as an area where trials are difficult to enroll or complete, the interest from pharmaceutical companies will be less.
Aerobic1: What are some of the new treatments that are being used to treat advanced sarcoidosis? What have been the results or findings for treatment? I live in Detroit, how would I set up an appointment to have the pulmonary group at Cleveland Clinic see me? How do I find out about some of the advanced treatments that are being conducted at Cleveland Clinic?
Kristin_Highland,_MD: Cleveland Clinic has a sarcoidosis hotline at 216.444.3613 or toll free 1.866.783.3679. We would be more than happy to evaluate you. There are many different medications that we use and data on efficacy is somewhat dependent on organ involvement.
Moderator: I'm sorry to say that our time with Cleveland Clinic experts Daniel Culver MD and Kristin Highland MD is now over. Thank you, doctors, for taking your time to answer our questions today about sarcoidosis.
Daniel_Culver,_DO: Thank you to everyone for their questions.
Kristin_Highland,_MD: Yes, thank you, and we wish you all good health.
To make an appointment, please call the Sarcoidosis Center of Excellence at 216.444.3613 or toll-free 866.783.3679. You can also visit us online at my.clevelandclinic.org/lungs-breathing-allergy/departments-centers/sarcoidosis-center.aspx
For More Information
On Cleveland Clinic
Cleveland Clinic Respiratory Institute’s Sarcoidosis Center of Excellence uses innovative methods of care and the latest technology and research to provide comprehensive care for patients with single and multi-organ disease involvement. We make sure patients quickly see the best doctors for their case by using a multidisciplinary approach to provide individualized care. Our team of specialists, who have expertise and an interest in sarcoidosis, includes pulmonologists, cardiologists, electrophysiologists, neurologists , ophthalmologists, dermatologists and rheumatologists. Cleveland Clinic provides cutting-edge testing including advanced diagnostic bronchoscopies for complicated sarcoidosis cases, such as cardiac sarcoidosis, as well as small-fiber neuropathy and neurosarcoidosis through our Neurosarcoidosis Clinic Our team also is constantly striving to understand the disease process of sarcoidosis and to find alternative treatments for its care through our research. We offer patients access to clinical trials not widely available at other institutions. Our goal is to minimize the degree to which sarcoidosis can affect quality of life for patients
For further information about Cleveland Clinic's Respiratory Institute’s Sarcoidosis Center of Excellence and sarcoidosis, please visit: my.clevelandclinic.org/lungs-breathing-allergy/departments-centers/sarcoidosis-center.aspx
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MyChart®: Your Personal Health Connection, is a secure, online health management tool that connects Cleveland Clinic patients with their personalized health information. All you need is access to a computer. For more information about MyChart®, call toll-free at 866.915.3383 or send an email to: firstname.lastname@example.org
A remote second opinion may also be requested from Cleveland Clinic through the secure Cleveland Clinic MyConsult® website. To request a remote second opinion, visit eclevelandclinic.org/Consult
If you need more information, click here to contact us, chat online or call the Center for Consumer Health Information at 216.444.3771 or toll-free at 800.223.2272 ext. 43771 to speak with a Health Educator. We would be happy to help you. Let us know if you want us to let you know about future web chat events!
Some participants have asked about upcoming web chat topics. If you would like to suggest topics, please use our contact link my.clevelandclinic.org/webcontact/webmail.aspx.
This information is provided by Cleveland Clinic as a convenience service only and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. Please remember that this information, in the absence of a visit with a health care professional, must be considered as an educational service only and is not designed to replace a physician's independent judgment about the appropriateness or risks of a procedure for a given patient. The views and opinions expressed by an individual in this forum are not necessarily the views of the Cleveland Clinic institution or other Cleveland Clinic physicians. . ©Copyright 1995-2013 The Cleveland Clinic Foundation. All rights reserved.Reviewed: 06/13