Online Health Chat with Daniel Culver, DO, and Brian Southern, MD

October 21, 2015


Sarcoidosis is an inflammatory disease that affects multiple organs, but it most commonly affects the lungs and lymph glands. Although it occurs throughout the world and can affect individuals of all ages and 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.

About the Speakers

Daniel Culver, DO, is a staff physician in the Department of Pulmonary, Allergy and Critical Care Medicine at Cleveland Clinic's Main Campus. His clinical interests include sarcoidosis, pulmonary alveolar proteinosis, critical care and interstitial lung diseases.  Dr. Culver is a fellow of the American College of Chest Physicians and a member of several professional associations, including the American Thoracic Society, the American Osteopathic Association and the World Association of Sarcoidosis.

Brian Southern, M.D., is a staff physician in the Respiratory Institute and assistant professor of molecular medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. He has a secondary appointment as an associate staff scientist in the Lerner Research Institute Department of Pathobiology, where his research focus is idiopathic pulmonary fibrosis (IPF). In addition, Dr. Southern conducts an outpatient clinic where he cares for patients with interstitial lung disease and sarcoidosis.

Let’s Chat About Sarcoidosis:

Simply About Sarcoidosis

Summertime: Is sarcoidosis hereditary? If so, what are the chances of me having it if my mother had it?

Daniel_Culver,_DO: Sarcoidosis definitely has a hereditary component. Some of the genes regulating the immune response have been most strongly implicated. However, there are also exposure issues and perhaps "immune memory" issues that go into the risk of sarcoidosis. Your chances of getting it are higher if your mother had it. Depending on your racial background, the odds of getting it compared to someone with no family history of sarcoidosis range from two to five times higher.

MRQUARTERMAIN: Does this malady have anything to do with lung cancer?

Brian_Southern,_MD: Sarcoidosis and lung cancer are completely separate entities. However, patients with cancer can sometimes develop sarcoid-like reactions in their bodies. Additionally, there is a lot of conflicting data regarding whether sarcoidosis puts one at a higher risk for cancer. A recent study looked at many smaller studies (a meta-analysis) and determined that there is likely a small increased risk of cancer in patients with sarcoidosis.

flyinghigh: Is this disease similar to fibrosing mediastinitis, and if so do you treat these patients with vasodilators?

Brian_Southern,_MD: If there is a lot of lymphadenopathy in the chest, sometimes this can be mistaken for fibrosing mediastinitis. However, these are two completely different diseases. Certain vasodilator therapies are used in patients who have pulmonary hypertension related to their sarcoidosis, but these therapies are not used for sarcoidosis itself.

mandyb: What role, if any, do you think sugar plays in the improvement or worsening of sarcoidosis? Does sugar contribute to the inflammatory effects of sarcoidosis?

Brian_Southern,_MD: There has been some data in the rheumatoid arthritis literature suggesting that sugar can increase inflammation in the disease. There has been no concrete evidence demonstrating this in sarcoidosis that I am aware of. I have patients who swear by avoiding sugar, and they feel their disease has improved. But again, there has not been any concrete evidence sufficient to make me recommend avoiding sugar carte blanche.

glt716: I have been told that I am in remission. My chest X-ray is basically clear. Statistically, if it comes back, would it start as a stage 2? ( I was stage 2 when I was diagnosed). I worry every time I have chest pain or a cough if I should call the doctor.

Daniel_Culver,_DO: If you had a chest x-ray with infiltrates, and they cleared up without therapy, the chance of sarcoidosis coming back is less than 5 percent. If they cleared up with therapy, then the chance of it coming back is dependent on how chronic the disease is and whether other organs are involved, as well as your race. If you have made it three years off therapy without evidence of recurrence, then it is very unlikely that the disease will come back.

Sarkie1: I find that doctors really do not have a set plan on when to treat sarcoidosis. How do you determine when to treat and when to watch and see?
Daniel_Culver,_DO: That is a challenging question. The decision to treat can broadly be categorized into two groups, as per Athol Wells: situations of "danger" and situations where there is a quality of life consideration. The later obviously involves the patient's preferences about the burden of their symptoms versus the toxicities of the medications. For danger, we look at whether it is likely that the effects on the organs will be harmful over the long run. Some factors that come into play include: which organ is involved, how many organs are involved, chronicity of the disease, severity of the effect on the organ, evidence that the disease is active, likelihood of remission, evidence of progression versus stability, digression of symptoms and the patients' preferences.

porovets: What lab tests would show you have this problem?

Brian_Southern,_MD: There are no specific lab tests to diagnose sarcoidosis. The diagnosis is made based on a biopsy showing evidence of granulomatous inflammation. There are lab tests that can support the diagnosis, such as ACE and sIL2r levels.

Effects on Organs

Jeni11: What can be done about lung scarring?

Daniel_Culver,_DO: At this time, there is no known therapy that reverses lung scarring. There are some newly approved treatments in another scarring disease of the lung, IPF. These treatments slow progression of scarring in that disease. There are rumors that trials may be coming soon to test these drugs in sarcoidosis.

Raphael: It may just be a coincidence, but around the time that I was diagnosed with sarcoidosis, my calcium and creatinine levels seemed to increase. What effect, if any, can sarcoidosis have on blood calcium and the kidneys?

Brian_Southern,_MD: Great question! The inflammatory cells in sarcoidosis can produce Vitamin D, which can result in increased calcium levels. The increase in calcium can result in kidney stones and kidney dysfunction. Additionally, sarcoidosis can directly involve the kidneys and cause kidney dysfunction. The first step would be do evaluate your Vitamin D levels (both 25-OH and 1,25-Vitamin D) to determine if your sarcoidosis is driving the increased calcium. If not, you may need to have some testing on your kidneys to determine if there is direct sarcoidosis involvement of the kidneys.

Nanat426: If you have parotid biopsy-proven sarcoidosis, does it make lesions in the lungs and (long) bone automatically sarcoidosis? I have never had any procedures to make sure lung nodules are sarcoid, and there seems to be no "good" spots in bone involvement to biopsy. Therefore, my pulmonary doctor is saying "possible" bone involvement. I have also been diagnosed with SFN. We have found a TNF inhibitor that has seemed to help the lungs but not the bone pain. Do you have any other suggestions for a person who has liver problems? The rheumatologist was thinking about leufonamide. Do you have any recommendations for a rheumatologist at Cleveland Clinic who has a specialty of sarcoidosis? (Dr. Highland was ill when I went for my appointment there.) Thanks so much for all your work and doing these webinars. They are very helpful for people who don't have access to specialists.

Daniel_Culver,_DO: With biopsy-proven sarcoidosis in one organ, I usually think most of the other organs that show abnormalities are also due to sarcoidosis provided that:1) the imaging looks typical for sarcoidosis; 2) the manifestation is one usually seen in sarcoidosis, and 3) the symptoms are consistent with sarcoidosis, as well as the behavior of the other lesion. Otherwise, we would run around biopsying every inch of some people!

aeliram: I was diagnosed multiple organ sarcoidosis about four years ago. My spleen was removed and was full of granulomas. My lungs showed many granulomas, but since then I have been on prednisone, Plaquenil, methotrexate, Humira and now the last couple of years Imuran. Even though the CT two years ago showed most granulomas either small or cleared, I still have shortness of breath. Does this sound like a normal occurrence to you? Thank you so much for your time and consideration. Marilea

Brian_Southern,_MD: Hi Marilea. Thanks for sharing your story. Unfortunately, this is a common experience. It is good to hear most of the disease has improved. Patients may continue to have shortness of breath or cough even if the disease has gone into complete remission. We think this is due to airway hyper-reactivity that has occurred as a result of the previous inflammation from sarcoidosis. The treatment approach to this is usually similar to what we would do in asthma (with inhaler therapy).

The Pain Source

dflow: I have lower back pain and also pain in my left buttock. The pain management doctor says it is coming from my sacroiliac. He did injections into it five months ago, and it did seem to help for three months. The pain came back with a vengeance, and he did injections again two weeks ago. It may have helped some but the pain is still there, especially if I do any manual labor. Also, I felt something pop in the center of my lower back, and then there was bad pain on the left side of my lower back and buttock. I had an MRI and the orthopedic doctor said my spine was full of arthritis and I had spinal stenosis. I also attended physical therapy for six weeks and sometimes was pain free, but it always came back. The pain management doctor said there was a lot of dark areas he noticed while giving me the injection in my sacroiliac. Is there any surgery that might be appropriate for me?

Multiple Maladies

pclark861: I have sarcoidosis of the lungs. I have been diagnosed for about nine years now. I see my pulmonary doctor regularly or as needed, but lately I have had some serious vertigo and also my heart palpitates a lot more than usual lately. I have some new joint pain going on as well, but I am thinking that is just part of the joint aches that can come with the disease. I wonder if I should be seeing another specialist besides my pulmonary doctor and my neurologist. Thank you.

Brian_Southern,_MD: That is a good question. Some of the symptoms you are describing could relate to nerve involvement in sarcoidosis (small fiber neuropathy), and you would also want to exclude heart involvement. Joint aches/pains are very common with sarcoidosis. I would recommend seeing a sarcoid specialist who is comfortable with diagnosing and treating forms of the disease such as small fiber neuropathy and cardiac involvement.

dzilisch: Thank you for taking the time to address our questions. I’ve been part of the Inspire Sarcoidosis group for a number of years. During that time, I’ve noticed a number of members develop pretty rapidly progressing degenerative problems of the spine. I’m no exception. I had no back issues and was pretty active until I was diagnosed with sarcoidosis in 2010. Now I have a Grade 1 (mild) anterior listhesis of L5-S1 without spondylolysis and (severe) spinal canal stenosis at that level. I have been told that the stenosis is my primary issue. Can you explain how sarcoidosis affects the spinal canal? Does the chronic inflammation speed up otherwise age-related degenerative changes? Can sarcoid inflammation or lesions in the spinal canal be distinguished from stenosis due to other causes? Will surgery fix the stenosis if it’s caused by sarcoidosis? If hardware is implanted, do people with sarcoidosis have a higher risk of developing a metal sensitivity?

Daniel_Culver,_DO: That is a great question, and an interesting observation. I am not aware of any literature that supports the observation you have made, but it could potentially be true. Some of the spine instability could potentially be related to steroids prescribed for your sarcoidosis. If there is weight gain, that could also increase the chance of spine problems. But, I am not sure I can think of a viable explanation for sarcoidosis causing inflammation of the connective tissue parts of the spine that would lead to problems like spondylothisthesis. As far as hardware goes, I think you are probably fine. Metals should not be an issue any more than they are in the general population.

SStone: Since being diagnosed with sarcoidosis, the many doctors I have seen keep diagnosing me with what they say are conditions that have nothing to do with sarcoidosis: Reynauds, osteoarthritis, plantar fibrodemas, degenerating discs in spine, true iron deficiency anemia. Has the sarcoidosis caused these conditions or are they just part and parcel of sarcoidosis?

Daniel_Culver,_DO: This is a really good question, and something I struggle with all the time. With sarcoidosis, you are clearly allowed to develop other problems, but sarcoidosis can cause symptoms or issues that are not correctly attributed to the disease. Sometimes, I think that after the diagnosis, more and more tests get ordered and more things are found, and many of the issues that come up after developing sarcoidosis are due to the toxicities of the medications used to treat it. The list you gave is usually not associated with sarcoidosis; however, Raynaud's could be a part of the autonomic effects of small fiber neuropathy. The best advice I can give you is to keep an open mind about which symptoms are part of sarcoidosis and which are not, and work with a doctor who is willing to dig in and do the same.

Irishpal: My sarcoidosis was discovered when I was rushed to the ER with heart attack-like symptoms then diagnosed with pericarditis.  I have multi system sarcoidosis in the lungs, skin, eyes and lymph nodes. No one has told me one way or another if the pericarditis means I technically have a form of cardiac scar? My MRI of the heart muscle did not detect active sarcoidosis or scarring there, but isn't pericarditis still cardiac sarcoidosis? I am also a recent stage 3 thyroid cancer patient. Are there any unique risks associated with having both conditions?

Daniel_Culver,_DO: Pericardial involvement is rare, fortunately. I think it does not have anything to do with cardiac sarcoidosis, which means to me inflammation or scarring of the heart muscle itself. So, I would not look at you as having a high particular risk of cardiac sarcoidosis as opposed to other patients. As far as the thyroid malignancy, I am not aware of any association between the two. Rarely, malignancy can cause a granulomatous reaction that resembles sarcoidosis, but I doubt it would be so extensive as the one you had, so it is more likely you just had both diseases separately.

SF2014: Can you explain the relationship between sarcoidosis and postural orthostatic tachycardia syndrome? I was diagnosed with POTS by a tilt table test. Is it necessary to have further testing to determine the cause of my POTS, or is it assumed to be caused by sarcoidosis?

Daniel_Culver,_DO: POTS may well be due to sarcoidosis, and if no other cause is found I might be very suspicious that the two are linked. You would then fall under the category of small fiber neuropathy with autonomic involvement. Some testing would be helpful to confirm the association, such as a QSART (quantitative sudomotor axonal reflex test). You might also have other autonomic symptoms, like flushing, sweating, palpitations, diarrhea/constipation, swallowing problems, dry eyes, vaginal dryness, erectile/sexual function problems. If some of those are present, I would also be more suspicious.

Artgirl: I am curious about the link between non-Hodgkin's lymphoma and sarcoidosis. My oncologist talked about finding small pockets of patients where this has been happening. I have been treated twice for NHL. The first infusion of bendamustine, a year ago last July, left me with breathing problems that have not abated. It is being linked to the sarcoidosis. Thanks for any comments.

Daniel_Culver,_DO: The "sarcoidosis-lymphoma syndrome" is widely recognized. It can occur with either disease happening first or with both at the same time. Individuals who have sarcoidosis do have a higher chance of developing non-Hodgkin's lymphoma, but the overall risk is low nonetheless. The chemotherapy agents can cause lung scarring or inflammation, but that would be different than sarcoidosis.

The Pain Source

dflow: I have lower back pain and also pain in my left buttock. The pain management doctor says it is coming from my sacroiliac. He did injections into it five months ago, and it did seem to help for three months. The pain came back with a vengeance, and he did injections again two weeks ago. It may have helped some but the pain is still there, especially if I do any manual labor. Also, I felt something pop in the center of my lower back, and then there was bad pain on the left side of my lower back and buttock. I had an MRI and the orthopedic doctor said my spine was full of arthritis and I had spinal stenosis. I also attended physical therapy for six weeks and sometimes was pain free, but it always came back. The pain management doctor said there was a lot of dark areas he noticed while giving me the injection in my sacroiliac. Is there any surgery that might be appropriate for me?

Diagnosis Difficulties

INspirD: I have had one strange symptom after another since March of this year. In June things got so bad, I really thought I was dying. I finally got in to see a rheumatologist. After hearing my history and symptoms, he felt it could all be sarcoidosis. However, all labs were normal. These labs were taken at the end of August when a lot of my symptoms had subsided. My results were: ACE=50 U/L, Rheum factor=<11 IU/ml. Others all normal as well. The doctor says to come back for repeat labs when/if I experience more symptoms. I am still having symptoms but things are better. I have not had any type of biopsy although I've had chronic unilateral facial swelling and an enlarged lymph node in my neck that comes and goes and has since this all started. I've had a brain MRI that showed some demyelination, which the doctor said is sometimes seen in sarcoidosis. I am a survivor of a rare cancer called primitive neuroectodermal tumor. That was hard but this is worse due to not knowing what's happening. Do you have any recommendations?

Daniel_Culver,_DO: I'm sorry to hear about your problems. Sarcoidosis is tricky because it can mimic so many disorders, and it is a diagnosis of exclusion, so it is often discussed when strange syndromes occur. If your parotid gland is swollen, a biopsy of the tail of the parotid might yield a diagnosis of sarcoidosis, as long as an ENT doctor does not think that the swelling is due to parotid duct obstruction (e.g. from a stone). Otherwise, you are likely stuck with getting a needle biopsy or complete removal of the neck lymph node to get a diagnosis. However, if the lymph node is waxing and waning, it is quite likely that the findings will show reactive lymphoid tissue, meaning that the lymph node is just a bystander, and you must search for the cause of what is making it become inflamed. Are your dental issues all okay?

CT1974: Hi. Thank you for letting me submit my question. I’ve been having severe hip pain for almost one year. I also have wrist, finger and left foot pain. I have seen several doctors, but nothing has been found on lab tests or radiology. I also had three mold episodes of uveitis. Finally, I went for labs, and had an ACE=68, which my general practitioner dismissed and said was negative, but my new rheumatologist considered abnormal. I also have erosions on my first metatarsal head. Again the PCP dismissed it. I've been on methotrexate for two months and was prescribed prednisone, which gave me immediate relief. The rheumatologist is suspicious of sarcoidosis, but I have negative chest x-rays, although I can't go up the stairs without bad shortness of breath and tachycardia. I need some opinions, as I do not have a definite diagnosis. I also have a lot of other weird symptoms, but this post is already long, I really appreciate your time and attention.

Brian_Southern,_MD: Sometimes, sarcoidosis can present like this with involvement of only the joints. This is much more difficult to diagnose because other diseases can also present in the same fashion. Sometimes, a synovial biopsy will prove that you have sarcoidosis. You should be screened to make sure that you do not have another inflammatory joint disorder or autoimmune disease. Rheumatologists will typically order a panel of blood tests to screen for these. If a firm diagnosis cannot be made, I would recommend continuing the treatment as you are on, as it seems to be helping.

Ethelm: I am severely allergic to adhesive and can't have the Holter test. Is there another way of gathering the data gathered by the Holter test? My cardiologist has not been forthcoming with alternatives. What is the specific data gathered by the Holter test? Thank you.

Daniel_Culver,_DO: The Holter test is designed to look for rhythm problems that could indicate active or burned out cardiac sarcoidosis. Mainly, we are looking for episodes of fast rhythms, especially ventricular tachycardia, that can be a prelude to sudden death. Other considerations about how badly you need a Holter include the symptoms, the results of other image studies, the results of the cardiogram and the EKG. If monitoring the heart rhythm is really felt to be important, your doctor could implant a loop device under the skin to monitor the rhythm for a month or more.

lmartin: How often should a sarcoidosis patient follow up for scans and breathing function tests if they are not experiencing any active symptoms?

Daniel_Culver,_DO: If you are talking about pulmonary sarcoidosis, I would place symptoms as the most important, breathing test as number two (maybe annually for a while), and the plain chest-x-ray (not CT scan) as the least important. The frequency of follow-up depends on how long the disease has been present and whether treatment was required recently.

dzilisch: Do muscle biopsy findings of “denervation associated with reinnervation, single muscle fibers surrounded by mononuclear cells, granulomas, fibers of varying sizes intermingled randomly, no necrotic and regenerating fibers, no inflammatory changes, some fibers with decreased reactivity or target formations, a single ragged blue fiber, no cytochrome c oxidase negative fibers, mild increase in perimysial connective tissue, and normal glycogen and lipid contents” support a diagnosis of sarcoidosis myositis/myopathy or some other chronic neurodegenerative disease, or could the quadricep denervation/reinnervation be a complication of L5-S1 level stenosis? Do I need additional testing to make that determination? I had a mildly positive ANA in 2010 and again last month. My CK level has been normal. Organic Acid Test showed high neurotransmitter metabolic markers: 5-Hydroxyindoleacetate, Quinolinate and Picolinate, and high oxidative damage marker: p-Hydroxyphenyllactate. Thanks.

Daniel_Culver,_DO: An EMG may be helpful to distinguish these. I don't think spinal stenosis would cause those findings. Even though there is no granuloma there, it could still be muscle sarcoidosis, as the granulomas can be really tricky to find, since they are patchy. Overall, it sounds like you need to see a skillful neuromuscular person.

The Pain Source

dflow: I have lower back pain and also pain in my left buttock. The pain management doctor says it is coming from my sacroiliac. He did injections into it five months ago, and it did seem to help for three months. The pain came back with a vengeance, and he did injections again two weeks ago. It may have helped some but the pain is still there, especially if I do any manual labor. Also, I felt something pop in the center of my lower back, and then there was bad pain on the left side of my lower back and buttock. I had an MRI and the orthopedic doctor said my spine was full of arthritis and I had spinal stenosis. I also attended physical therapy for six weeks and sometimes was pain free, but it always came back. The pain management doctor said there was a lot of dark areas he noticed while giving me the injection in my sacroiliac. Is there any surgery that might be appropriate for me?

Finding a Physician

Cillz: Hi. I was diagnosed in 2013 with pulmonary sarcoidosis. During testing, they also found out I had hyperthyroidism. They treated my thyroid problem after a few months on carbimazole. I no longer take medications for my thyroid, as my levels are normal. They did not treat the sarcoidosis though. I feel better but still really tired. How do I know if I should be on some medications to help sarcoidosis or not? I feel there is not much information here in New Zealand about it. Can we get more information here in New Zealand about sarcoidosis?

Brian_Southern,_MD: Hello. You should have a thorough evaluation to try to determine if your sarcoidosis is active (chest x-ray, breathing tests, EKG, eye exam, blood work, etc.). If it is active and you are having significant symptoms, treatment would be recommended. Many patients with sarcoidosis can continue to have fatigue even if the disease is no longer active. There are options for treating sarcoidosis-related fatigue. Roger Allen is one sarcoidosis expert in Australia, but I don't know anyone in New Zealand. You may want to check with the World Association for Sarcoidosis and Other Granulomatous Disorders (WASOG), where they have a lot of resources for people with sarcoidosis.

Sarkie1: I live in Florida and there does not seem to be any sarcoidosis specialists, just doctors who claim to be familiar and able to treat sarcoidosis but then I find are not really educated on the disease. What would you recommend for someone in my situation? We do have Mayo Clinic, but I'm not sure of their expertise either?

Daniel_Culver,_DO: Dr. Divya Patel trained with us. She is in Jacksonville at University of Florida, and she is excellent in sarcoidosis. CCF Weston also has several physicians who are familiar with the disease.

ducklb: My son is 54 years old and retired from the Navy after 21 years. He was diagnosed with sarcoidosis on March 6, 2015. The surgeon performed a r/para trachael. The diagnosis was sarcoidosis. He was admitted for paralysis of both legs, mainly left side weakness. He was put on 60mg prednisone. He was diagnosed with neurosarcoidosis. Since then, he has had two stokes and a heart attack and now has weakness on his left side and continues to have abdominal pain. He has an enlarged liver (18cm) and has uncontrollable diabetes mellitus and is insulin dependent. His HTN average is 150/90. His primary care physician knows nothing of this disease. His neurologist tries to help with his nervous system, but admitted freely that the case was too complicated for him and he had no idea how to treat with prednisone. Anyway, we found Mt. Sinai Sarcoid Clinic, and they agreed to help over the phone, so he is now on Cellcept. (He took 500mg bid x14 days, then 1000mg bid x14 days and now is on 1500mg bid along w/prednisone 50mg daily and we are watching his blood work.) However, now he has heaviness in the chest, not pain, and is very weak in the legs. We have no doctor who will treat him. What should we do?

Brian_Southern,_MD: I'm sorry to hear about your son. This is a difficult case. In cases like this, I would strongly encourage you to have him evaluated at dedicated Sarcoidosis Center where they can take a careful approach to his different issues. We would be very happy to see him at the Cleveland Clinic Sarcoidosis Center of Excellence if this is a possibility.

rremington: Does or will Cleveland Clinic consult with patients and doctors out of state if the doctors in your area are not very well educated.

Daniel_Culver,_DO: We have a tool called MyConsult that allows your doctor to send your medical records, then we will review them and make a suggestion(s). It is not uncommon for us to answer direct questions from other doctors if they are specific and call us.

Treating Symptoms

lindap: You mentioned there are options for treating sarcoidosis-related fatigue. My eyes lit up at that! What would some of the options be?

Brian_Southern,_MD: There has been one randomized controlled trial demonstrating that Focalin XR was effective in treating sarcoidosis-related fatigue. There has also been a small trial demonstrating that Nuvigil (armodafinil) is effective. These are the first two options we usually offer patients suffering from sarcoidosis-related fatigue. The precursor to Nuvigil, Provigil, is also sometimes used. These are the major options that are available and seem to be somewhat effective.

Imzlim: Currently, I am being treated for neursorcoidosos. I take 6ml methotrexate once a week, but I am unable to work due to extreme fatigue and brain fog. Will these symptoms lessen or go away with treatment or are they something I will have to learn to live with?

Brian_Southern,_MD: Good question. Many patients with sarcoidosis experience fatigue and brain fog. These symptoms will often improve and sometimes completely resolve with treatment, as the inflammation subsides. However, sometimes these symptoms persist. In these cases, we often recommend symptomatic therapy for the fatigue/brain fog (Focalin, Nuvigil or Provigil).

infoseeka: I have sarcoidosis that was diagnosed by biopsy seven years yrs ago. It is Type 1 on the old Scadding scale and deemed no need for steroid treatment. Late into the third year, I went into "clinical remission," as my blood tests looked good and my hilar lymph nodes shrank on all scans. Most importantly, my constant dyspnea disappeared. BUT, I still have the other symptoms: chronic joint and muscle pain, chronic fatigue, low grade fevers, hyperhydrosis and feelings of sickness, which all get worse the more I get active? Many pulmonologists I have seen say it is impossible to have sarcoidosis now, as I am in "remission." Afterward, 12 months of CPAP has had no influence on my symptoms at all. Anti-inflammatories still help with muscle pain and fevers a lot. I have been trying Ritalin and gabapentin the last few months, and that seems to help, too, but my symptoms still get worse the more active I get? I have lost my life savings, recently my decade-long job and career, everything nearly. Can this still be sarcoid-related after going into "clinical remission"? Help!

Brian_Southern,_MD: Although the common philosophy is that once sarcoidosis has been in remission for a period of time it is unlikely to recur, we have seen cases where sarcoidosis does "come out" of remission. The first issue would be to determine whether you are dealing with active sarcoidosis or what many call "post-sarcoidosis" syndrome. This syndrome can consist of all of the symptoms you mentioned and can occur even if sarcoidosis is in remission. In these cases, we often try to target the symptoms with therapies that improve quality of life.

Sewgirl: Is there any way to stop the rapid hair loss?

Brian_Southern,_MD: Hair loss can occur in sarcoidosis and, more commonly, with some of the treatments for sarcoidosis. I have had some patients report improvement in their hair loss with minoxidil (Rogaine).

Neurosarcoidosis Notes

bharris1125: Hi there. I went to the emergency room in January with what I thought was a severe sinus infection because of a horrible headache and fever. It turned out that I had meningitis, and I went into a coma and ended up being paralyzed from the waist down. I was diagnosed with neurosarcoidosis in May and started on prednisone and methotrexate. I have gained 70 pounds and my back pain is excruciating. I recently had new MRIs done and was told that the lesions are showing improvement, but I still have significant swelling around the brain and spinal cord. I do not feel that my body is rebounding from any of this because I still have all of the symptoms of peripheral neuropathy, incontinence, muscle and joint pain, fatigue, and the list just goes on and on. Is it safe to assume that there is some permanent damage? Do people with neurosarcoidosis have as good of odds of it just going away?

Brian_Southern,_MD: Hello. Thanks for sharing your story. Neurosarcoidosis has a variable course in different individuals. It can go into remission, behave in a relapsing-remitting way or, in some cases, progressively worsen over time. If you have significant swelling despite long-term therapy, this may be more difficult to treat. If there is "hydrocephalus," sometimes this can be relieved by placing a shunt to remove the fluid and reduce swelling. Your prognosis depends on whether or not you still have active, ongoing inflammation in your brain, which can be seen on contrast MRI.

nurse0879: I have neurosarcoidosis and it's hard to find info on it. Do you have any suggestions?

Daniel_Culver,_DO: Start with the Foundation for Sarcoidosis website  ( There is a lot of good information there. There is also a registry for neurosarcoidosis that is being run through the WASOG website and the ILD Care foundation. I would encourage anyone with neurosarcoidosis to participate.

More on Medications

snickley: One of the medications I take for my pulmonary sarcoidosis is Remicade. I get infusions every six weeks. I see a lot of discussion about building up antibodies to it. How do you know if you are? Is there a blood test that should be done to check? Also, I get severe joint pain about three days after an infusion, and it lasts until about week four or five. Have you ever heard of this before?

Daniel_Culver,_DO: r antibodies are more common with Remicade (infliximab) than with Humira (adalimumab), since infliximab is a partially human, partially mouse antibody. We usually use methotrexate or leflunomide to cut down on the incidence of antibodies. There is a blood test for r antibodies; your doctor can probably arrange it. However, based on the symptoms you are having, I am quite suspicious you are having an inflammatory reaction, such as serum sickness, to the medication.

desperado: Is prednisone the drug of choice for control of sarcoidosis, having tried most everything else. Each time I try to get off prednisone, my symptoms come back. When tapering off from 60, getting down from 7.5 to 5 made me feel terrible. I felt I should stay at 7.5. I felt OK at that level. My kidneys are still struggling. I have issues with my lungs, heart and kidneys. Has anyone had experience with K2 M7? It seems to help with heart palpitations, but I don't know about the kidneys?

Brian_Southern,_MD: Prednisone is the first line of treatment for sarcoidosis and is usually very effective. However, it is not a good long-term therapy due to its many side effects. In order to be able to wean off prednisone, most doctors will consider adding a steroid-sparing agent like methotrexate in patients who need a longer course of treatment. I have not seen any medical literature supporting the use of K2 M7.

mandyb: Treatment often includes multiple lines of medication; for example, Plaquenil, methotrexate and Remicade all at the same time. What is the likelihood a patient can maintain this regimen of multiple medications over a long span of time? What is the average length of time this regimen has been successful in cardiac sarcoidosis? What is the risk of long-term use of these medications?

Brian_Southern,_MD: We have a number of patients who are being treated with multiple agents. The general plan is to try to eventually start to drop off the medications one by one and reach a point where remission is achieved. For cardiac sarcoidosis, we often treat for a time period of two years. Some people recommend one year of therapy, but we have had a number of relapses of cardiac sarcoidosis after one year. This is much less likely after two years of therapy. The major risks with these medications are risks of infection due to suppression of the immune system. Certain agents have also been associated with malignancies in long-term use.

The Pain Source

dflow: I have lower back pain and also pain in my left buttock. The pain management doctor says it is coming from my sacroiliac. He did injections into it five months ago, and it did seem to help for three months. The pain came back with a vengeance, and he did injections again two weeks ago. It may have helped some but the pain is still there, especially if I do any manual labor. Also, I felt something pop in the center of my lower back, and then there was bad pain on the left side of my lower back and buttock. I had an MRI and the orthopedic doctor said my spine was full of arthritis and I had spinal stenosis. I also attended physical therapy for six weeks and sometimes was pain free, but it always came back. The pain management doctor said there was a lot of dark areas he noticed while giving me the injection in my sacroiliac. Is there any surgery that might be appropriate for me?

The Pain Source

dflow: I have lower back pain and also pain in my left buttock. The pain management doctor says it is coming from my sacroiliac. He did injections into it five months ago, and it did seem to help for three months. The pain came back with a vengeance, and he did injections again two weeks ago. It may have helped some but the pain is still there, especially if I do any manual labor. Also, I felt something pop in the center of my lower back, and then there was bad pain on the left side of my lower back and buttock. I had an MRI and the orthopedic doctor said my spine was full of arthritis and I had spinal stenosis. I also attended physical therapy for six weeks and sometimes was pain free, but it always came back. The pain management doctor said there was a lot of dark areas he noticed while giving me the injection in my sacroiliac. Is there any surgery that might be appropriate for me?

Advancements and Research

derekl: Have there been any treatment advancements for small fiber neuropathy associated with sarcoidosis, other than IVIg?

Daniel_Culver,_DO: Small fiber neuropathy is common in sarcoidosis, affecting up to 20 percent or 30 percent of people. It may cause either painful nerve symptoms (typically burning or tingling) or dysautonomia, which can lead to light-headedness, flushing, sweating and GI difficulties. IVIg is somewhat effective for some people, but it is expensive, difficult to obtain and sometimes toxic. ARA-290 is a novel compound that we have studied, along with the group in Leiden Netherlands. A preliminary trial was just completed, and the final results are nearly analyzed, so stay tuned for the update. At this point, however, it is not available commercially and would probably have to go through another round of trials before the FDA would even look at it.

WendyDear123: Have any links been established between patients with eye and lung sarcoidosis and the subsequent development of symptoms related to CREST syndrome? Are research studies being proposed or carried out to study this connection?

Brian_Southern,_MD: There have been small studies to try to determine whether there is a link between sarcoidosis and systemic sclerosis (the main disease associated with CREST syndrome). A clear link has not been established, but there are some genetic mutations that appear to be very similar in these diseases. I am not aware of any current ongoing studies examining this topic.

vateton: Is there any new news on the ARA 290 trial, either results from phase 2 or dates set for phase 3?

Daniel_Culver,_DO: Analysis is nearly finished on the data, then a decision will be made about the next steps. I am hopeful that a phase 3 trial targeting sarcoidosis will be the next move, but I am not sure it will be.

Jeni11: Are there any trials or new medications for lung sarcoidosis?

Daniel_Culver,_DO: There are several trials going on now. Two that we are conducting include the CLEAR trial, a trial of therapy against mycobacteria for pulmonary sarcoidosis, and a trial of nicotine patches for pulmonary sarcoidosis. The CLEAR trial tests the question of whether sarcoidosis is due to an (unobserved) infection by nontuberculous mycobacteria. Nicotine has well-known effects on t-cell function and is somewhat protective against the development of sarcoidosis. A very old medicine, ACTHAR gel, is also being used now in sarcoidosis, though it has not been on the radar for several decades. It works via some steroid-dependent effects, but it also has a number of steroid-independent effects, so its overall role in management of sarcoidosis is still a little uncertain.


That is all the time we have for questions today. Thank you, Dr. Culver and Dr. Southern, for taking time to educate us about sarcoidosis.

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Cleveland Clinic
Since sarcoidosis is a multi-system disorder that can affect many different organs, patients affected by this complex disease can benefit from seeking treatment at a multi-disciplinary sarcoidosis specialty center. The Cleveland Clinic Respiratory Institute’s Sarcoidosis Center of Excellence can help you manage your condition by serving as a single point of access for you to receive specialized care. The 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. Our team of specialists, who have expertise and an interest in sarcoidosis, includes pulmonologists, cardiologists, electrophysiologists, neurologists, ophthalmologists, dermatologists and rheumatologists. 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.

Cleveland Clinic Health Information
Learn more about sarcoidosis symptoms, causes and risks, diagnostic tests and procedures, treatments, and wellness tips.

Cleveland Clinic Treatment Guide: Sarcoidosis
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