Appointments

866.320.4573

Request an Appointment

Questions

800.223.2273

Contact us with Questions

Live Chat Hours: 9:00a.m.-3:00p.m., M-F EST

Expand Content

Sarcoidosis

Online Health Chat with Dr. Joseph Parambil

September 27, 2011


Introduction

Cleveland_Clinic_Host: 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 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.

Joseph Parambil, MD, is an Associate Staff Member in the Department of Pulmonary, Allergy and Critical Care Medicine. He is also Assistant Professor of Medicine at Cleveland Clinic’s Lerner College of Medicine. Dr. Parambil is a member of several professional societies, including the American College of Physicians, the American Society of Internal Medicine, the American College of Chest Physicians, the American Thoracic Society, and the Pulmonary Hypertension Association. He has presented a number of times on topics such as disease pathology, connective tissue disorders, and the causes and associations of pulmonary infarctions, among many others.

To make an appointment with Dr. Parambil, please call the Sarcoidosis Center of Excellence at 216.444.3613 or toll-free 1.866.783.3679. You can also visit us online at my.clevelandclinic.org/lungs-breathing-allergy/default.aspx.

Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Joseph Parambil. We are thrilled to have him here today for this chat. Let’s begin with some of your questions.


Insurance Issue

melle: I was diagnosed with systemic sarcoidosis, neurosarcoidosis, and autonomic neuropathy. My insurance company is patently refusing to authorize IVIG (intravenous immunoglobulin) regardless of what diagnosis we use. I am currently unable to work at all due to neuro symptoms, i.e., tremors, muscle spasms, loss of fine motor skills, headaches, light sensitivity, foot drop, etc. Is there any other treatment for the autonomic neuropathy that we can/should be looking at, as my insurance company just continues to say "no!" And when is it time for me to look into something more than my short-term disability through my employers? I fear my FMLA (Family and Medical Leave Act) will run out before I get relief from symptoms in this current flare that doesn't seem to end.

Dr__Joseph_Parambil: This is a difficult situation that we face constantly in trying to get medications that we believe will be beneficial to patients but have been continuously denied by insurance providers.

The symptoms you describe from the neuropathy are very difficult to treat if IVIG is not obtained for you. You can try certain supplements such as CO-Q10. The other thing that may help is a graduated water-based exercise program along with exercises that emphasize spindle stretch (Tai Chi, Yoga, Pilates, etc.)


Fatigue

ncwoolgatherer: Please discuss the fatigue factor of sarcoidosis, its root cause(s), and what can be done to alleviate or at least minimize its debilitating effect on quality of life. I am especially curious to know if there are any specific recommendations for diet and/or exercise.

Dr__Joseph_Parambil: Fatigue is a common problem in sarcoidosis; about 40 percent of patient with sarcoidosis have fatigue. The root cause is not exactly known, and most of the available treatments for these symptoms, which can be disabling, are non-specific stimulants, i.e., Folcian. A regular exercise program and a healthy sleep schedule are important components of disease management, and drugs are usually instituted only after restructuring exercise and sleep.

clevelandborn: What is the cause of fatigue with sarcoidosis?

Dr__Joseph_Parambil: Fatigue is a common problem in sarcoidosis and is seen in almost 40 percent of patients. The exact cause for this is unclear but is related to the immune dysfunction associated with this disease. The best way to explain this will be the example of the 'flu.' When afflicted with flu, even though the virus primarily targets the nose and lungs, fatigue is a huge part of this disease because the immune system is activated to fight off this infection. Similarly, in sarcoidosis, the immune system is chronically activated, giving you chronic fatigue.


Diagnosis

trish23950: What tests are performed to diagnose sarcoidosis?

Dr__Joseph_Parambil: The diagnostic test for this disorder is usually tissue biopsy. Most often, the tissue is obtained from the lungs. Other areas include skin, conjunctiva, liver, or even lymph nodes elsewhere in the body. Once the tissue is obtained, we look for granulomas in this tissue to make the diagnosis.

dj2003: I was diagnosed with lymph/spleen/liver/eye sarcoidosis in 2008. I would like to know how important it is that I obtain further diagnosis for sarcoidosis? I continue to have eye symptoms, I have unexplained Pap tests, strange sores on my body, and for the past year my chest has been expanded by over 1". These all may or may not be sarcoidosis. So how important is it that I travel to Los Angeles or Denver to get a complete diagnosis? Thanks DJ

Dr__Joseph_Parambil: Once the diagnosis of sarcoidosis is established by documented granuloma, there is no need to further pursue additional sites of biopsy to prove this diagnosis. For you, the main issue here seems to be continued eye symptoms for which an ophthalmologist can adequately identify ocular inflammation if present and attribute it to sarcoidosis. It is extremely rare/unheard of for sarcoidosis to be associated with unexplained Pap tests and for your chest wall to expand by an inch.

Laurag: I have had high ACE (angiotensin converting enzyme) serum levels for the past five years (which lowers with prednisone) but no pulmonary involvement. My doctors aren’t sure whether I have sarcoidosis or not. I have another condition (Ehler Danlos) that would mimic some sarcoidosis symptoms, and my doctors aren’t really sure which they are treating. Do you just wait for certain pulmonary symptoms to arise to confirm if it is sarcoidosis? Are there additional tests that should be run?

Dr__Joseph_Parambil: ACE levels are not diagnostic of sarcoidosis, although they are elevated in this disease. Several pulmonary disorders and other unrelated diseases have been associated with elevated ACE levels. To make the diagnosis of sarcoidosis, one usually needs to have a tissue biopsy demonstrating non-necrotizing granulomas.

debbie1967: I am in my 40s, never smoked, active throughout life. This February, I started having insomnia and fatigue. I have been a competitive beach volleyball player and in February also noticed decrease ability to play (would get out of breath easily, shaky hands). Checked heart, lungs, did chest X-ray, found 3-4 >4mm granuloma, pulmonary was not concerned as we did repeat in a month and no change in size. Meanwhile, continued to decline in exercise capability (as I cannot catch my breath), and periodic waves of debilitating fatigue (no energy), wouldn't sleep just rest. Would this be telltale symptoms of sarcoidosis? I have a healthy diet.

Dr__Joseph_Parambil: The finding of scattered small indeterminate nodules on chest imaging sometimes read by radiologists as granulomas is not equivalent to the disease sarcoidosis. People who live in the Midwest and the South are endemically exposed to specific fungi in the soil that can cause these small nodules in the lungs.


Lung Involvement

lacroixg: Is lung damage progressive with sarcoidosis (prominent subcarinal and bronchial nodes), and can calcified granulomas from earlier episodes cause exercise intolerance?

Dr__Joseph_Parambil: Lung damage is considered progressive in sarcoidosis only when there is evidence of PF (pulmonary fibrosis). It is not based on prominent subcardinal and bronchial nodes. Calcified granulomas do not cause exercise intolerance.

debbie1967: In turn, I hear that nodules on the lungs are a more common finding (and are not cause for worry) than people think, like 1 in 10 or something?

Dr__Joseph_Parambil: Yes you are correct.

ajscott: When the disease is very advanced and the patient shows marked decline, how long can this phase typically last? What is the average lapse between rapid decline and eventual fatality?

Dr__Joseph_Parambil: It is hard to decipher from your question about the advanced nature of the disease and the nature of decline because sarcoidosis is a systemic disease and the main concern in the U.S. about disease progression is lung fibrosis. If lung fibrosis is what you are talking about, then this tends to progress a lot slower than idiopathic pulmonary fibrosis. Nevertheless, there is increased risk of progression and once lung fibrosis sets in, life span is reduced.


Neurosarcoidosis

petku001: Hi. I was diagnosed with neurosarcoidosis in July 2009. I've been taking 2000 mg of mycophenolate per day since Aug 2009. I live in the Baltimore/Annapolis area and was diagnosed while I was in the Anne Arundel Medical Center. After reading accounts from other patients, I tend to think my sarcoidosis is manageable. My main symptoms are constant fatigue and difficulty breathing. The difficulty in breathing comes from the fact that my nose/nasal passages became stuffed immediately when my other symptoms -- severe muscle pain, dual Bells-Palsy, etc. -- appeared in May 2009. To this day, my nose is constantly stuffed/clogged 24 hours a day, every day. I’ve been to a pulmonologist and an ENT who was not familiar with sarcoidosis, but haven’t had any success with the treatments. My questions are: How do I find an ENT doctor who is familiar with the effects of sarcoidosis? What treatments would you suggest? I apologize for the long question. Any help you can give me would be GREATLY appreciated. Thank you.

Dr__Joseph_Parambil: I think that the specialty of the physician is less important that his or her desire to be a quarterback for your care and knowledge of sarcoidosis or willingness to learn. Usually, one is treated by the pulmonologist or rheumatologist, but there is no reason why a general physician cannot do it as well.


Medications

lagalbraith: I have pulmonary sarcoidosis diagnosed in 1995. Over the last 16 years, the fibrosis in my lungs is gradually increasing. I was taking Plaquenil and methotrexate, recently just stopped Plaquenil. What do you find to be the best to prevent increased fibrosis?

Dr__Joseph_Parambil: Some patients with pulmonary sarcoidosis progress toward PF. Methotrexate has been described to cause PF. If the fibrosis in the lungs has been gradually increasing, besides stopping your Plaquenil (hydroxychloroquine), your doctor may want to consider stopping the methotrexate as well.

There is some data to support the use of Remicade® (infliximab) and similar drugs in patients with significant fibrosis of the lungs.

ncwoolgatherer: Is it unusual for symptoms to recur when you try to wean off of an immunosuppressant like CellCept® (mycophenolate mofetil)?

Dr__Joseph_Parambil: No, it is not unusual for symptoms to occur when you are trying to wean off immunosuppressants.

solid: I was diagnosed with sarcoidosis after emergency admission to the hospital (Aug 2009) with acute kidney failure caused by hypercalcemia. Lung involvement was "minimal," and after four months of prednisolone has not so far reappeared. However, after discontinuing the prednisolone in Jan 2010, I immediately became moderately neutropenic. A bone marrow biopsy in July 2010 confirmed the presence of sarcoid granulomas and provided my hematologist with a textbook sample for her collection! In 20 years I was the first case she had seen, so she could offer no prognosis, but recommended going back on the prednisolone to lower the inflammation. I declined the steroids and 12 months later my blood figures remain static. Was I correct to refuse the prednisolone, and do you know of any comparable cases that would provide some sort of guidance as to the outlook for the future? Thank you for your time.

Dr__Joseph_Parambil: Sarcoidosis can involve the bone marrow with subsequent neutropenia. Due to the risks of infection based on the severity of the neutropenia, treatments with prednisone are often offered. However, if your neutropenia is mild and you have not had frequent infections, remaining off immunosuppressants and periodically following you is adequate.

lagalbraith: I bruise very easy. For example, putting on my eye glasses gave me a black eye. I am currently taking only methotrexate and folic acid. I also recently bumped my leg, the bruise very severe and spread to my ankle. Can this bruising be related to sarcoidosis. I have been to a hematologist and they have found nothing out of the ordinary.

Dr__Joseph_Parambil: Drugs like prednisone and methotrexate can predispose you to easy bruisability by several mechanisms. They can reduce platelet numbers and function, as well as increase skin fragility. So, with a combination of these mechanisms, you tend to bruise.

jep13: What is the relationship between sarcoidosis and calcium?

Dr__Joseph_Parambil: Around 5 percent of patients with sarcoidosis also have elevated blood calcium levels due to the production of certain hormones from the granulomas to increase absorption of calcium from the intestines. Similarly, nearly 20 percent of patients with sarcoidosis have increased urinary excretion of calcium that predisposes them to kidney stones.


Sarcoidosis and Other Conditions

dottidot52: I am a 59-year-old female and have had sarcoidosis since the age of 23, mostly affecting the lungs. At the age of 29 I developed lichen sclerosis of the genitals. Since both are autoimmune diseases. Did the sarcoidosis cause the lichen sclerosis? Also, I was once told that sarcoidosis can cause arthritis. I also now have severe arthritis in my spine, neck, shoulder, knees, and foot. How does one find out if it is cause from sarcoidosis?

Dr__Joseph_Parambil: There is no association between sarcoidosis and genital lichen sclerosis. Now, sarcoidosis can cause arthritis. However, the joint symptoms are more related to inflammation of the surrounding ligaments and soft tissue rather than direct joint involvement. Therefore, if your X-rays show degenerative changes of your spine and knees, then this is more mechanical in nature rather than being related to sarcoidosis.

classicgem: I was diagnosed with sarcoidosis in my bones, joints, and muscles. My ankles were constantly swollen even after months of prednisone. Six months later, I had ruptured a tendon in my ankle and needed emergency surgery. I am still having complications and need another ankle surgery. I just had ACL and meniscus tear reconstruction surgery two weeks ago. My rheumatologist and orthopaedic doctors are baffled. Is sarcoidosis impeding my recovery, and should I expect more problems with my bones, joints, and muscles? My doctors are trying to help, but have never dealt with this. Any help is welcomed. Thanks.

Dr__Joseph_Parambil: Sarcoidosis can affect bones, joints, and muscles. It sounds like the rupture of the tendon in your ankle could be related to sarcoidosis.

Sarcoidosis should not impede recovery from your recent ACL /meniscus repair unless you are still on prednisone, which has been shown to interfere with wound healing.

reynokd: After a biopsy confirmed diagnosis of sarcoidosis in 2008, I have developed fibromyalgia. Is it common to develop additional autoimmune diseases after being diagnosed with one?

Dr__Joseph_Parambil: Yes. It is not uncommon to be diagnosed with other autoimmune diseases in patients with sarcoidosis.

debbie1967: Cardio and pulmonary exercise tests showed "normal," and to try to get back to exercise when I'm not fatigue. There was a suggestion of possible anxiety. How can one distinguish the difference between anxiety or hypothyroid and sarcoidosis?

Dr__Joseph_Parambil: Sounds like sarcoidosis is not an issue here. To distinguish anxiety from hypothyroidism involves a simple blood test and checking TSH levels. If normal, you are not hypothyroid.

Elizabeth: I have had sarcoidosis in one lung and 1/3 of my other lung for many years. I have multiple symptoms in my body and am familiar with sarcoidosis, but I haven't been able to find answers to these questions. Thank you for your help. Can sarcoidosis cause weakness, pain, and cramps in my legs and arms? Can it cause my leg muscles to atrophy? Can it cause balance loss? Can it cause pain in my left ribs when standing for too long? Can it cause a palpable lump in my neck, and hoarseness and clearing of my throat frequently, especially after eating?

Dr__Joseph_Parambil: Sarcoidosis can cause weakness, pain and leg cramps, as well as balance difficulties. This is usually due to the presence of neuropathy of the small nerves that is seen frequently in sarcoidosis.

It is unusual, however, for sarcoidosis to cause hoarseness and clearing of your throat, especially after eating. This may be more related to esophageal reflux or post-nasal drip.

snowflakes: I have small fiber neuropathy (SFN) and I have been having problems with low blood pressure, temperature regulation and problems with urinating. Is this related to the SFN. I am currently taking IVIG only.

Dr__Joseph_Parambil: Yes. Low blood pressure, temperature regulation and problems with urination are seen with SFN due to involvement of the autonomic nervous system. Thus far, the only promising agent used for this has been IVIG, which you are already on.

Sheilamd: I have pulmonary sarcoidosis and I was taking prednisone starting at 40 tapering down to 5, now I am off. It cleared up my lungs. My issue is now that my legs and ankles and hands are swollen and numb abdomen. I am always in pain and sometimes can hardly move. I also have drooping of my face at times by my lips. Can I have neurosarcoidosis without there being any spots on my brain? They did an MRI of my brain and it was fine. I go back in September for a follow-up chest X-ray and ACE blood work to make sure my lungs are still OK. I just want to know what the next step I should take. I do have a rheumatologist, but he is at a loss of my constant pain. I do have signs of arthritis in my back and knees, but he said nothing that should be causing me this much pain.

Dr__Joseph_Parambil: Perhaps your problems relates to small fiber neuropathy. The facial drooping is not part of small fiber neuropathy and can indicate a neurologic problem. It would be advisable to have a neurologist evaluate you. Cranial nerve involvement in sarcoidosis is often difficult to see on an MRI, so sometime the diagnosis is made on clinical grounds. Small fiber neuropathy is a recently recognized phenomenon in sarcoidosis that is a common cause of pain and autonomic symptoms.


Remission

ahmc: What percent of sarcoidosis cases go into remission or become symptoms free? After how long a period without symptoms would you say a person is free of sarcoidosis?

Dr__Joseph_Parambil: Most of the data regarding sarcoidosis going into remission is related to the lungs. For this purpose, there is the ‘Scadding Stages (I-IV).’ Patients with Stage I disease have a 60 percent to 70 percent likelihood of going into remission whereas patients with Stage IV disease have <10 percent likelihood of going into remission.

CanOkie: What are the chances of remission for someone who has never had lung involvement, but has had sarcoidosis in the skin, spleen, joints, and bone marrow for several years?

Dr__Joseph_Parambil: When sarcoidosis affects the skin, the likelihood of the disease being mild or spontaneously going away depends on the area affected. People who have facial involvement (Lupus pernio) have a more aggressive form of the disease with lower likelihood of remission.

Similarly, when the bones are involved, the disease tends to be more aggressive. However, involvement of the spleen, joints, and bone marrow has little effect on the eventual course of the disease.

ahmc: 22 years ago I had enlarged lymph nodes in my chest with symptoms of compromised upper respiratory health. By difficult process of elimination, a diagnosis of sarcoidosis was made. I had symptoms for about three years, after which my only problem has been prolonged recovery time from ordinary colds (four to six weeks). How does one determine if sarcoidosis has gone away or not? Can other symptoms appear years after going without major symptoms?

Dr__Joseph_Parambil: It is almost impossible to determine if sarcoidosis has gone away, and most treating doctors would consider the disease to be in a control state if there had been improvements in imaging or other test finding when compared to previous values. However, it would be important to regularly follow with the specialist that follows your sarcoidosis, because symptoms can appear several years after being symptom free.


General Questions

Sarcoid101: What are your current areas of research for sarcoidosis? Do you have any ongoing clinical trials that are recruiting patients? If so, how do patients find information about the trials and registration?

Dr__Joseph_Parambil: We have ongoing trials currently on sarcoidosis. Most of them are geared toward looking at various agents that block key factors thought to play a role in the formation and maintenance of granulomas.

Information about these trials at Cleveland Clinic can be found at clevelandclinic.org/sarcoidosis.

64mcmgirl: As a patient, it's difficult to know who will be making sure that nothing falls through the cracks and which doctor we should be asking what. Other than minor health concerns (colds, flu, sprains, broken bones), whom do you feel should be a sarcoidosis patient's care coordinator -- a primary care manager/general physician or a specialist? And if a specialist, which specialty: pulmonary, rheumatology, etc.? Who should be stepping up to bat making sure all systems are being properly checked? Obviously I know that I have to care for myself, but who will make sure that I don't miss something that I don't know that I am missing?

Dr__Joseph_Parambil: This is a very good question, as sarcoidosis is a multi-system disease with involvement of doctors from multiple specialties.

Here at Cleveland Clinic, we have a Sarcoidosis Center of Excellence that is quarter-backed by the pulmonologists; and after discussions with the various specialists, a unifying treatment plan is tailored for the specific patient and followed by the pulmonologist.

A similar approach can be done at other institutions with the quarterback being a rheumatologist, or even a PCP with a specific interest in sarcoidosis.


More Information

For more information about our center of excellence you can visit Dr. Parambil, please call the Sarcoidosis Center of Excellence at 216.444.3613 or toll-free 1.866.783.3679. You can also visit us online at my.clevelandclinic.org/lungs-breathing-allergy/.

A remote second opinion may also be requested from Cleveland Clinic through the secure eCleveland Clinic MyConsult Web site. To request a remote second opinion, visit www.eclevelandclinic.org/myConsult.

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 www.clevelandclinic.org/webcontact.

This chat occurred on 9/27/2011

This information is provided by the Cleveland Clinic 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. ©Copyright 1995-2011 The Cleveland Clinic Foundation. All rights reserved.