Online Health Chat with Joseph Khabbaza, MD & Manuel Ribeiro, MD
Tuesday, June 27, 2017
Sarcoidosis is a common and potentially severe disorder. Approximately 60 percent to 70 percent of patients with sarcoidosis will experience mild symptoms with a quick recovery. Other patients will develop long-term complications with little or no response to conventional steroidal therapy. Anyone can get sarcoidosis, but the disease is found more commonly in African-Americans and affects individuals of Irish, German, Scandinavian and Puerto Rican descent. Sarcoidosis often affects more than one organ, so patients may need to see more than one type of physician.
Within Cleveland Clinic's Respiratory Institute, the Sarcoidosis Center serves as a single point of access for patients to receive the best care for their condition. With innovative methods of care, research and technology, we are committed to providing the most comprehensive care to patients with single and multi-organ disease involvement.
At the Sarcoidosis Center, we make sure patients quickly see the best doctors for their case by using a multidisciplinary approach. Our team of doctors, who have expertise and an interest in sarcoidosis, includes specialists in pulmonology, cardiology, electrophysiology, neurology, ophthalmology, dermatology and rheumatology. At Cleveland Clinic's Sarcoidosis Center, we:
- Offer individualized patient care with access to a spectrum of specialists
- Provide leading-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
- Minimize the degree to which sarcoidosis can affect quality of life for patients
- Conduct research to understand the disease process of sarcoidosis and to find alternative treatments for care
About the Speakers
Joseph Khabbaza, MD, received his medical degree from the State University of New York Upstate Medical University and completed his residency at The Ohio State University Medical Center. Following this, he finished his fellowship at Cleveland Clinic and was appointed to our staff in 2015. His specialty interests include interstitial lung disease (ILD), sarcoidosis, lung nodules, COPD and asthma.
Manuel Ribeiro, MD, earned his medical degree in Brazil, at the Federal University of Bahia, in 2006. He completed a residency in internal medicine at Jackson Memorial Hospital/University of Miami in Florida (2006-2010; Intern of the Year, 2006-2007; Chief Resident, 2009-2010). In 2010, he was elected into the Alpha Omega Alpha Honor Medical Society. Dr. Ribeiro completed three years of pulmonary and critical care fellowship training at Cleveland Clinic (2010-2013; Chief Fellow, 2012-2013). After completion of his fellowship training in 2013, Dr. Ribeiro returned to Brazil, where he served as coordinator, Respiratory Medicine Service at Hospital Cardio Pulmonar in Salvador. He rejoined Cleveland Clinic in 2016.
Let’s Chat About Sarcoidosis Management and Treatment Options
tmorris1273: How do you get sarcoidosis? Is it contagious? Is there anything that can be done to prevent it? Thank you.
Joseph_Khabbaza,_MD: Sadly, to this day no one quite knows why sarcoidosis develops in some people. It is likely a combination of genetic make-up and environmental factors. Nothing can be done to prevent it, and it is certainly not contagious. Interestingly, many 9/11 first responders who had high exposures to Ground Zero for weeks after the attacks developed a sarcoidosis-like condition, which supports that exposures may play a role in some people.
boomer46: Is pine pollen considered a causative agent for sarcoidosis?
Joseph_Khabbaza,_MD: As far as we know, no causative agent has been identified in sarcoidosis.
Cammie: What are the types of sarcoidosis?
Joseph_Khabbaza,_MD: Technically, sarcoidosis can involve any part of the body. The lungs are the most common site, as 95 percent have involvement there. Next are skin, with 15 percent having involvement there, lymph nodes at 15 percent, eyes at 11 percent and liver at 11 percent.
cvinson: Does sarcoidosis affect any particular race more often?
Joseph_Khabbaza,_MD: Sarcoidosis seems to affect African Americans about three times more.
mdtrent12: When you say based on the type of sarcoidosis you have, do you mean degree, or can you list the types?
Manuel_Ribeiro,_MD: Great question. I mean the location of your sarcoidosis. The most common type is lung sarcoidosis, but it could also happen in the lymph glands, skin, eyes and other organs as well.
sarcprincess1974: I have heard a lot lately about sarcoid patients passing away, and I’m wondering what are the underlying reasons for that?
Joseph_Khabbaza,_MD: Because sarcoidosis is such a different disease in each individual person, it is hard to say for sure. In sarcoidosis that is advanced and requiring long-term treatment with medications that lower the immune system, bad infections can lead to serious illness. In the small percentage of sarcoidosis patients who have heart involvement, there is a slight increased risk of sudden cardiac death if not treated.
Dkbucks11: If you have chronic sarcoidosis, what is the likelihood it could go into remission with the right treatment? If not likely, will the medications to manage symptoms leave me with a reasonably normal life?
Joseph_Khabbaza,_MD: Oftentimes, sarcoidosis goes into remission without any treatment at all. In about one-third of patients, it will go into remission after treating with immune suppression. If you are able to be treated long-term on medications that are not prednisone, you may be able to have a close-to-normal life. However, there are so many variables that would go into that.
sarcprincess1974: On my mediastinoscopy results, it showed Myceliophthora mold. I am having trouble finding much information on this. I’m wondering if that has anything to do with getting sarcoidosis?
Joseph_Khabbaza,_MD: There is no evidence at this time that Myceliophthora mold exposure leads to sarcoidosis.
Ironstar10: Are we any closer to a cure for sarcoidosis, or can we still only treat symptoms?
Joseph_Khabbaza,_MD: Technically, immune suppression cures sarcoidosis in many while alleviating symptoms as well. The treatment of sarcoidosis centers on suppressing the immune system; however, many of those medications have their own side effect/symptom profile.
boomer46: Hello. Is it true that once a patient is diagnosed with sarcoidosis and it is successfully treated with steroid therapy, i.e. prednisone for a year, that patient still has the disease?
Manuel_Ribeiro,_MD: He or she could still have the disease, but not necessarily. In fact, depending on which type of sarcoidosis the patient has, there is a big chance the disease will go away within two years.
TGTG: My husband has a new diagnosis of lung sarcoidosis. Is it safe for him to fly?
Joseph_Khabbaza,_MD: It is safe to fly with lung sarcoidosis. In a small amount of patients that have advanced scarring, supplemental oxygen is needed. It is safe to fly with oxygen, but generally the airline provides a form to have your physician fill out with details about the oxygen delivery.
Nanat426: Is it just me or does hot weather make it seem harder to breathe? The weather here has been in the 100+ range, and it really seems to impact how short of breath I am. It also seems to increase fatigue.
Joseph_Khabbaza,_MD: Weather can affect breathing for sure. Some people feel breathing is better in warmer weather; some feel it is worse. The same holds true for colder weather and humidity.
mdtrent12: Do you recommend using natural cleaning products, such as vinegar and peroxide?
Joseph_Khabbaza,_MD: I am not aware of any specific recommendations regarding cleaning products.
mdtrent12: It’s summer. Can my sarcoidosis get amped-up from being out in the sun?
Manuel_Ribeiro,_MD: Probably not. There is no evidence sun exposure can make sarcoidosis worse.
boomer46: Is there any relationship between sarcoidosis and aortic aneurysm?
Manuel_Ribeiro,_MD: No. Sarcoidosis can affect the heart and very rarely the blood vessels. However, aortic aneurysm is not one of its manifestations.
bkacz: I was diagnosed with sarcoidosis then 14 years later diagnosed with CVID, common variable immune deficiency. I’m seeing an immunologist now, and she says the sarcoidosis is GLILD, granulomatous lymphocytic interstitial lung disease. Are the treatments the same? Is it possible the IVIG infusions would cause a flare?
Manuel_Ribeiro,_MD: The treatment for sarcoidosis and GLILD are very similar, but there are some differences. The IVIG should not cause a flare of the sarcoidosis or the GLILD.
cteeps34: Does sarcoidosis have any link to RA and lupus? I was diagnosed with sarcoidosis about 15 years ago. Now my rheumatologist says I fall under the umbrella of lupus, RA and sarcoidosis.
Manuel_Ribeiro,_MD: Yes. Sarcoidosis has been linked to other autoimmune diseases such as RA and lupus. One does not cause the other, but sometimes they can happen in the same patient, which seems to be your case.
Imzlim: How often do sarc patients develop fibromyalgia, and what course of treatment is usually taken when this occurs?
Manuel_Ribeiro,_MD: Sarcoidosis is a different disease than fibromyalgia. However, the symptoms can be very similar. There are many options to treat fibromyalgia-like symptoms in sarcoidosis, depending on what is the underlying cause.
Ironstar10: Is there a correlation with lymphomas or other cancers developing in those with sarcoidosis either from the disease itself or from the medications used? I know when I was first diagnosed, they were pretty sure it was lymphoma due to the size of the nodes and how active they were on PET scan. Of course, that sticks in the back of the mind now, and I don't want to find out later that was also present or developed later but not looked for because of the sarcoidosis diagnosis.
Manuel_Ribeiro,_MD: Yes. There is a correlation with sarcoidosis and lymphomas. One does not cause the other, but they can be seen in the same patient occasionally. In addition, they can look alike at the beginning of the presentation because both diseases cause enlargement of lymph glands. However, if you had a good evaluation and your physician concluded that you had sarcoidosis, that's a good thing.
mselzer: Does sarcoid mimic MS?
Joseph_Khabbaza,_MD: Some manifestations of neurosarcoidosis can mimic some signs of MS. If you are having these concerns, a neurologist should be involved in your work-up as well.
Lyn67: Can sarcoidosis affect possible breast cancer?
Joseph_Khabbaza,_MD: We do not have any evidence that suggests that at this time.
Something About Skin
bkacz: Are there any treatments for cutaneous sarcoidosis that work?
Joseph_Khabbaza,_MD: Many people with cutaneous sarcoidosis experience a great response to a course of prednisone alone. If the lesions return with a prednisone taper, then prednisone is increased while starting a second agent such as methotrexate. Then, the prednisone is tapered off again. If there are still issues with cutaneous sarcoidosis despite a second agent, then an IV infusion called infliximab is pursued, which can be helpful. However, it is not common for cutaneous sarcoidosis to need infliximab.
LCBradley: Is it possible to have dermatological sarcoidosis but still experience fatigue from it?
Joseph_Khabbaza,_MD: Great question. Any type of sarcoidosis can be associated with fatigue. That is why it is important to rule out other causes of fatigue such as obstructive sleep apnea, as that is easily treatable.
mdtrent12: Can you explain cutaneous sarcoidosis?
Manuel_Ribeiro,_MD: Cutaneous sarcoidosis is one of the most common manifestations of sarcoidosis. It can affect up to 25 percent of patients. It can really affect any area of the skin, including the face, and it has many different types of appearance. For some unknown reason, it has a predilection for scars and tattoos.
mdtrent12: Is there any information you can give on facial rashes. Mine is red, sore and hot to touch.
Manuel_Ribeiro,_MD: Sarcoidosis commonly affects the skin, so this could be sarcoidosis. As always, it is important to rule out other causes. If this is indeed sarcoidosis, topical steroids are an option, but oral medications can also be used.
mdtrent12: A local dermatologist is having a hard time identifying my facial rash. Is cortisone topical and prednisone the only remedy for a sarcoidosis rash? It gets hot and flaming almost like an allergic reaction.
Joseph_Khabbaza,_MD: Those are the first treatments. Generally, prednisone by mouth is very effective at treating a sarcoidosis rash. If it does not respond to prednisone, the rash may not be related to sarcoidosis. A biopsy would be helpful to confirm.
The Deal with Diet
srdetter: Is there any evidence that veganism helps with sarcoidosis?
Manuel_Ribeiro,_MD: No. Even though a healthy diet can be helpful for your health in general, there is no evidence that a specific type of diet is helpful for sarcoidosis.
mdtrent12: Have any patients had success controlling sarcoidosis symptoms with a strict plant-based diet?
Manuel_Ribeiro,_MD: There is no evidence that a specific diet helps with sarcoidosis. However, a healthy diet is good for other aspects of your health, so it is very important.
LCBradley: My most frequent symptoms are fatigue, hot flashes and joint pain. Is there a special diet or recommendations on how to help minimize these symptoms?
Manuel_Ribeiro,_MD: There are no specific diet recommendations to make those symptoms better. However, a healthy diet can help you in other aspects. For example, being at your ideal body weight can help with joint aches in general. A good exercise regimen is also good for fatigue.
FloridaSand28: Back to food questions. I have neurosarcoidosis. What about the studies at Temple with extra virgin olive oil and brain inflammation?
Joseph_Khabbaza,_MD: I believe that study looked at Alzheimer's disease specifically. To date, there is no specific diet that has been linked to improved outcomes in sarcoidosis. A healthy diet in general is the recommendation.
Guitarman 2: I have chronic sarcoidosis in the lungs. Should I avoid Vitamin D milk and dairy products?
Manuel_Ribeiro,_MD: In general, you should stop taking extra Vitamin D. However, you don't need to change your diet.
Mulling Over Medications
mabel155: Six years ago, I was diagnosed with sarcoidosis. I took deflazacort for two years. What are the side effects of this medication? Are there any natural treatments for this disease?
Manuel_Ribeiro,_MD: Deflazacort is a type of corticosteroid, such as prednisone. There are many side effects from this type of medication. Some examples are weight gain, increased blood sugar levels, increased blood pressure and osteopenia/osteoporosis. There is no natural treatment proven to treat sarcoidosis, but there are other medications we can use with fewer side effects than corticosteroids.
mdtrent12: I have a friend with a different autoimmune disorder. He gets IGG hemoglobin infusions. Is this ever used for sarcoidosis?
Manuel_Ribeiro,_MD: You probably mean IVIG (intravenous immunoglobulin) infusions. If that is the case, then yes. IVIG is used for sarcoidosis if the patient has a specific type of manifestation called small fiber neuropathy.
TGTG: Hello. Thank you for this health chat. Is there any role for inhaled corticosteroids in lung sarcoidosis? Specifically, the lymph nodes are inflamed at the top of his lungs.
Manuel_Ribeiro,_MD: Yes, there is a role for inhaled steroids in lung sarcoidosis. Sometimes, that's the only treatment we prescribe to control a patient's symptoms. It should not affect the lymph node inflammation, but it could make his cough or shortness of breath better.
stylesbyme2: I was diagnosed with sarcoidosis in 2008, and I’ve been on Remicade monthly and 90 grams of IVIG biweekly. Now all of a sudden, my heart rate shoots up but my oxygen is 99. I have had heart tests and pulmonary tests. During my six-minute walk in Cleveland hospital, I was made to stop because my heart rate was so high and my recovery time took forever, but my oxygen saturation was 99. What could be wrong?
Manuel_Ribeiro,_MD: Many things can cause your heart rate to go up during exercise. It is not necessary from the Remicade or the sarcoidosis. Sometimes, it’s just the normal response from your body to exercise. However, if this is happening frequently, at rest, or is bothering you significantly, it’s important to bring it up during your next doctor's appointment.
Dkbucks11: I have what I'm told is Stage II sarcoidosis. (I went to Cleveland Clinic a few years ago). Yesterday, my pulmonary specialist prescribed 40mg of prednisone and 1000mg of CellCept for a full month. Does this seem like a reasonable amount of each, or am I going to be a zombie or maniac until these drugs are tapered down in a few months?
Manuel_Ribeiro,_MD: Those are medications and doses that can be used for sarcoidosis. However, you are right that sometimes the side effects are significant and can impair your quality of life. Let your doctor know if the side effects are bothering you.
Mattsonauburn: What other medications can be used in place of the corticosteroids?
Joseph_Khabbaza,_MD: These medications are called "steroid-sparing agents" because they’re used to try to avoid long term prednisone. The best and most studied in sarcoidosis is methotrexate. Azathioprine, leflunomide and mycophenolate have also been used. For sarcoidosis that is refractory to all of those agents, an IV infusion of a medication called infliximab is the next step.
tbawt: I have cardiac sarcoidosis, which was discovered in late 2013 when it presented with Stage IV heart block. It was treated with prednisone, mycophenolate and a variety of heart medications. In July 2016, I dropped from 750mg/2xday of MMF to 500/2xday. Within 2 weeks, the sarcoid flared up again, resulting in even more significant heart failure. Two questions: (1) Is it possible that a reduction in MMF could result in a flare-up that quickly, or was it more likely something else was at play? (2) I have side effects with MMF. What is the current drug of choice for ongoing treatment?
Manuel_Ribeiro,_MD: Yes, it is possible that your sarcoidosis flared up as you went down on the dose of MMF. If you are having significant side effects from MMF, some other options are methotrexate, leflunomide and azathioprine. You could talk to your doctor to see if any of those options are good for you.
wrshultz: I have two questions regarding methotrexate (MTX) ramp-up and prednisone weaning for treating cardiac sarcoidosis based on a positive steroid receptive response from the initial 12-week prednisone therapy. (1) What is the optimum timetable and dosage for adding MTX and weaning from prednisone? (2) Are there any mineral supplements (calcium, magnesium, potassium, etc.) that should (or) should not be taken during this treatment?
Manuel_Ribeiro,_MD: The best timing to start methotrexate will depend on your type of sarcoidosis. In many situations, we prefer to start methotrexate together with prednisone, right at the beginning of the treatment. In general, you should not take Vitamin D if you have sarcoidosis.
wrshultz: Regarding the question about MTX ramping/prednisone weaning, can adding MTX to current prednisone treatment cause decreased exercise tolerance? After 12 weeks of prednisone (30mg daily), I reached an increased exercise tolerance versus pre-treatment, plus my LVEF went up from 46 to 61. Four weeks after adding a once weekly injection of MTX (10mg /.4ml of 25mg), I have started to experience decreased exercise tolerance (defined as shortness of breath and increased heart rate above expected for exercise load). Can adding the MTX reduce the LVEF or cause of flare of inactive sarcoidosis lung scarring/mild PH? Thanks again, Bill.
Manuel_Ribeiro,_MD: Methotrexate can frequently cause fatigue one or two days after you take your weekly dose. However, it should not cause shortness of breath or increased heart rate after exercise. It should not reduce your ejection fraction or cause a flare of the sarcoidosis, either. It is important to be evaluated to see if you are having any side effects from the methotrexate, or if you need to intensify/change the sarcoidosis treatment.
Ironstar10: Can a person develop an allergy to methotrexate over time? Would a rash that doesn't itch on the backs of the hands and moves up the arms along with on tops of the feet be a concern for this? It’s just small, raised bumps. Or are these typical of skin sarcoidosis involvement, which hasn't been evident or diagnosed before?
Joseph_Khabbaza,_MD: An allergy would be unusual to develop over time. Rashes are non-specific, so it is hard to say what that may be. Seeing a dermatologist for a skin biopsy would be most helpful, as that would suggest whether it is from a drug reaction, sarcoidosis or other cause.
wrshultz: My question is regarding endurance exercise during up titration of MTX and prednisone tapering. My lab results after four weeks of 10mg MTX weekly injections and continued 30mg if prednisone daily showed the following changes in my blood chemistry: WBC was borderline high and RBC, HGB and HCT were borderline low versus previous labs taken after 12 weeks of prednisone only. I've also developed a large bruise inside my left thigh that has not dissipated much over a week's time. My MTX dosage was just increased to 15mg weekly, but I was reluctant to up titrate that amount based on the blood numbers and bruising. Is this normal for the MTX and prednisone concurrent therapy? How do these changes affect my ability to participate in endurance-based exercise (long distance cycling, running, etc.)? Thanks again for having this discussion forum.
Manuel_Ribeiro,_MD: Bruising could be a side effect of the prednisone, because prednisone can cause weakness of your blood vessels. It should not be a side effect of the methotrexate. Regarding exercise endurance, going down on the prednisone dose should help because prednisone can even cause muscle weakness occasionally.
Speaking of SFN
derekl: Hi. I have had sarcoidosis and small fiber neuropathy (SFN) for six years, which had been under control until now. Recently, I had a flare up that affected my heart. Dr. Parambil added prednisone, which was successful based on my clean PET scan. Currently, I’m on 25mg of methotrexate and 80gm IVIG every four weeks, and I’m weaning off the prednisone from 20mg now down to 5mg. Lately, I've had burning in my right foot and shin, and to a lesser extent in my left leg and foot, some days worse than others. Should I be concerned, or is this something to be expected? Thank you.
Manuel_Ribeiro,_MD: This could be expected in your case of small fiber neuropathy, but it is always better to discuss your specific situation with Dr. Parambil next time you see him.
Seriously: What is the treatment for small fiber neuropathy from sarcoidosis?
Joseph_Khabbaza,_MD: Small fiber neuropathy secondary to sarcoidosis is generally treated with IV infliximab and sometimes IVIG (IV immunoglobulin therapy).
derekl: Can sarcoid and small fiber neuropathy cause dizziness, and if so how is it treated?
Manuel_Ribeiro,_MD: Yes. Small fiber neuropathy can cause dizziness. One good option to treat SFN is IVIG (intravenous immunoglobulin).
srdetter: I have vibrations and a tingling sensation that wake me up from sleep. During the day, I am fine. Could this be sarcoidosis related?
Joseph_Khabbaza,_MD: This could be related to sarcoidosis in the form of small fiber neuropathy. It would be important to first have a sleep study and rule out obstructive sleep apnea as a cause, as that is quite common and easily treated.
sarcprincess1974: I have an extreme sensitivity to touch. I get extreme pain for a few minutes, then it’s gone. Is there a correlation between that and sarcoidosis?
Joseph_Khabbaza,_MD: That could be a sign of small fiber neuropathy related to sarcoidosis.
mdtrent12: Can you explain small fiber neuropathy?
Manuel_Ribeiro,_MD: Small fiber neuropathy was recently found to be a manifestation of sarcoidosis. For some unknown reason, patients with small fiber neuropathy have a decreased number of very small nerves under the skin. This can cause symptoms such as tingling, numbness and pain in the hands and feet.
tbawt: How is SFN evaluated and are there any tests to diagnose it? Is it caused by sarcoidosis, a symptom of it or just a secondary diagnosis?
Manuel_Ribeiro,_MD: We evaluate SFN with questions about symptoms, and we also do a few tests (such as skin biopsy) to try to confirm or rule out the diagnosis. Sarcoidosis is one of the many causes of SFN, so it is important to rule out other causes during the medical evaluation.
Seriously: How serious can small fiber neuropathy get from the sarcoidosis. If it is treated, will it go into remission?
Manuel_Ribeiro,_MD: Small fiber neuropathy can cause symptoms that significantly affect a patient's quality of life. In our experience, we can improve those symptoms in about two-thirds of the patients with the available therapy.
Seriously: My sarcoidosis came back in my eyes after 16 years. I was treated with prednisone for six months. After being weaned off prednisone, I developed a lump on my lingual tonsil, extremely severe acid reflux, and a tingling, twitching sensation throughout my body. I am currently being treated by Cleveland Clinic in south Florida. I just had a biopsy for small fiber neuropathy. My question is: Is there a way to find out if it is the sarcoidosis that has traveled to the different parts of my body or are my symptoms a result of being treated with prednisone. Also, will the small fiber neuropathy get worse, and can it affect more organs? Thank you for your help.
Manuel_Ribeiro,_MD: If your biopsy is positive for small fiber neuropathy, it is more likely from the sarcoidosis than the prednisone. Prednisone should not cause small fiber neuropathy, but it is important to rule other causes of small fiber neuropathy with your physician. Small fiber neuropathy can get worse and cause dizziness and nausea, but not necessarily.
onilah: I have laryngeal sarcoid, as well as cutaneous and pulmonary. I have been off prednisone since January. My voice for the most part is gone. Do I need to resume prednisone to get my voice back?
Manuel_Ribeiro,_MD: You may need to resume the prednisone. However, there are other options. Talk to your physician about steroid-sparing agents, such as methotrexate, to see if they could be helpful in your case.
Chest and Lung Links
mdtrent12: I am a 53-year-old female who was diagnosed with sarcoidosis in the lung and chest lymph only in January 2017. My breathing is not bad; it has improved. I have an awful facial rash and sore arms and legs since taking Plaquenil. Does all this indicate that I have a chronic diagnosis, or is there still a chance this can go into remission?
Manuel_Ribeiro,_MD: If you were diagnosed in January of 2017, you still have acute sarcoidosis by definition. It could still go into remission. Based on the type of sarcoidosis you have, your physician can possibly tell you how high is that chance of remission.
cvinson: How can sarcoid in the lungs affect your overall health? Presently, I don't have symptoms, but I am concerned about how the disease may be silently affecting my body.
Joseph_Khabbaza,_MD: For many patients, sarcoid in the lungs has absolutely no influence on overall health. About one-third of patients with sarcoidosis in the lungs have no symptoms and never end up needing any medications. If you are having no symptoms, there is a good chance that the sarcoidosis will never affect your body. You need to make sure you have your basic blood work done that looks at liver function, kidney function, calcium level and blood counts. Assuming those are OK, then there is a good chance you'll be in the boat of not having any issues with sarcoidosis.
LCBradley: Do the majority of patients with skin sarcoidosis also have it in the lungs?
Joseph_Khabbaza,_MD: In general, most people with sarcoidosis have some lung involvement at least on imaging, even without any lung symptoms. Many patients with skin sarcoidosis have no lung symptoms or findings, but everyone is different.
Ironstar10: I have enlarged lymph nodes in my chest due to sarcoidosis but my lungs appear pretty clear. I am on methotrexate 15mg and still get the dry cough and sometimes when laughing I feel like I have a "smoker's cough." (It rattles in the sternal area but not deep down, meaning it doesn't feel like it’s down in my lungs.) Would this indicate the nodes are not shrinking or getting bigger? Would it be helpful to do any more scans to see, or is this just a typical symptom of sarcoidosis in the nodes of the chest?
Manuel_Ribeiro,_MD: Even though those symptoms could still be from your sarcoidosis, they are probably not from the large lymph glands. Enlarged lymph glands should not give you those symptoms. Sometimes, it is helpful to repeat scans. However, it is important to discuss your specific case with your doctor because if we can avoid scans it is always better.
Signs and Symptoms
Lpgabarb: Is sarcoidosis known to move after its primary venue is established? Mine has always presented in the eyes as panuveitis, causing glaucoma, inflammation, etc. It's held mostly in check by three methotrexate 2.5 tablets once weekly. That's all I dealt with up until now (glaucoma tubes, etc.), and my eyes were quiet this year until suddenly the erythema on legs became active. Sarcoid inflammation showed on lung nodules and appeared on my face as Heerfordt's syndrome. One extra methotrexate settled all that down, but the sarcoid reactivated stronger than ever in both eyes. I am going to use the legs as a barometer to determine if it's active somewhere other than my eyes. They're quiet now. Is it your conclusion that I will simply need to remain in an ongoing management mode as I have for five years?
Manuel_Ribeiro,_MD: Yes. Sarcoidosis can show up again years later. It is not usual, but it can happen. If you have had it for five years, then it is likely that you will have sarcoidosis as a chronic disease, just like other chronic diseases (i.e., diabetes, hypertension). However, with the medications we have nowadays, we can most likely keep your symptoms under good control.
mdtrent12: I have eye pain, but my eyes were checked out and found to be fine. I also get what feels like hot flashes that come and go. Can this be attributed to sarcoidosis?
Manuel_Ribeiro,_MD: Yes, this can happen with sarcoidosis. If an ophthalmologist evaluated you and told you your eyes are fine, than the eye pain is probably not from sarcoidosis. However, the hot flashes could be, but before we say that for sure, you need to talk to your physician to rule out other, more common causes.
Guitarman 2: Every spring in March, my sarcoidosis begins to affect me. My ace level goes up, I have fatigue and irritability, and my lungs are affected by granulomas, unless my prednisone dose is increased. I get by with low doses of prednisone 5 mg/day late October to early March, but I have to increase the prednisone dose to 10 mg per day or more in late March through June to get me through. It’s like my body is responding to the allergy season. Is there any way to break this cycle? I have had sarcoidosis since 2008.
Manuel_Ribeiro,_MD: If you have had sarcoidosis since 2008, then it is probably a chronic condition by now. We need to find ways to control your symptoms without many side effects. One possibility would be to try what we call "steroid-sparing agents," such as methotrexate, to try to decrease the amount of prednisone you need every year.
LCBradley: How do you know if you have sarcoidosis if hot flashes and night sweats could be from perimenopause or sarcoidosis?
Joseph_Khabbaza,_MD: That can be a challenge. One way to make the determination would be to see if those symptoms improve on sarcoidosis treatment. If not and suspicion remains, then an evaluation for small fiber neuropathy may be warranted.
Lpgabarb: I discovered my sarcoidosis with erythema nodosum on my legs, then some granulomas in my lungs, but that’s been rather quiet. The sarcoidosis has manifested itself primarily in my eyes with uveitis and glaucoma. I take 7.5 mg methotrexate weekly to keep the inflammation in check. I developed glaucoma requiring a tube in my right eye, and I use drops to maintain lower pressure. A month ago, the erythema flared all of a sudden and my eyes were totally quiet for a month, but then I developed inflammation on nodules in my lungs and Heerfordt’s syndrome on my face. I took extra methotrexate and my legs/lungs quieted down quickly, but the uveitis then reappeared in my eyes with a vengeance. The pressure went up from 13 to 53 in ten days. Have you seen the inflammation change locations like this before?
Manuel_Ribeiro,_MD: Yes. The inflammation caused by sarcoidosis can change locations. It is not what usually happens, but it is possible.
wrshultz: Can numbness or a thick feeling in the balls of your feet be related to small fiber neuropathy?
Joseph_Khabbaza,_MD: Yes, it can.
Lpgabarb: Is hypersensitivity to light and smells related to my sarcoidosis?
Joseph_Khabbaza,_MD: That would be an unusual manifestation but, technically, in sarcoidosis anything is possible.
Doctors and Directions
Cammie: I shattered my right humerus July 7, 2014. Three months later, I noticed a "lump" in my left upper arm. The lump was surgically removed. Pathology read sarcoidosis. The surgeon said not to worry about it. My pulmonologist said I needed a cardiologist to manage my care. The cardiologist said the pulmonologist should manage my care. I have had a granuloma in my lung for several years. A granuloma was noted on my liver approximately five years ago. I have been on Flovent inhalers for many years and periodically on steroids for respiratory flare-ups. My question is: What is my best avenue of follow-up and treatment, if necessary.
Manuel_Ribeiro,_MD: We believe you should see a physician with experience in managing sarcoidosis. Most of the time, it is a lung doctor, but not all of them are comfortable with every aspect of sarcoidosis. Rheumatologists frequently manage patients with sarcoidosis as well. Once you find a doctor comfortable with sarcoidosis, he or she should be the one coordinating your care in regard to your disease.
BeautyIsHerName: I would like to be seen at the Cleveland Sarcoidosis Clinic. Do I need a referral and where do I start?
Moderator: You may call and request an appointment with one of our sarcoidosis doctors locally at 216.444.3613 or toll-free 866.783.3679.To make an appointment with Cleveland Clinic’s Respiratory Institute, please call 216.445.6503 or visit us at my.clevelandclinic.org/departments/respiratory.
Other Areas Affected
tsiliffe: Hi. I am a 47-year-old white female. My family has a history of sarcoidosis. A total of six family members have it. I am currently having the following symptoms: fatigue, memory/word loss, bilateral feet neuropathy, headaches (occipital in nature), itching on my forearms only, low back pain, joint pain, dizzy spells and disturbances to my sleep. My MRI shows about 10 lesions that are non-specific, possibly demyelinating areas with one that is faint off of Dawson’s finger; however, after one year, there have been no changes. It is possible that this could be neurosarcoidosis?
Manuel_Ribeiro,_MD: Yes, it is possible that this is neurosarcoidosis. However, before we reach that conclusion, it is important you see a neurologist familiar with sarcoidosis.
LCBradley: In the past year, I have had three nodules in my thyroid, the largest was 5mm. Could this be related to sarcoidosis?
Joseph_Khabbaza,_MD: Sarcoidosis causing nodules in the thyroid gland is rare, but possible. Seeing an endocrinologist to biopsy will give the answer.
clevelandborn: Why does sarcoidosis effect joints?
Joseph_Khabbaza,_MD: We do not know why. Sarcoidosis can affect nearly any part of the body, which is why the inflammation or pain only occurs in some people's joints and not others. The reason is not known.
mdtrent12: Is muscle pain often seen in sarcoidosis patients?
Joseph_Khabbaza,_MD: It is not commonly seen, but certainly can be a manifestation in some people.
Diagnosis and Treatment
BeautyIsHerName: I had an MRI that mentioned small ischemic vessel disease. What is this? Should I be concerned because my neurologist thinks this is something put on most reports.
Joseph_Khabbaza,_MD: That is not something that would be related to sarcoidosis. That is reported in many scans and can be related to age or vascular disease, although a neurologist can give you a more specific explanation regarding that report description.
sarcprincess1974: What does it mean if your ACE level is 16?
Joseph_Khabbaza,_MD: ACE levels are not terribly helpful in sarcoidosis. ACE is an enzyme the body makes that is elevated in some people with sarcoidosis but is also normal in many people with sarcoidosis. It is not a diagnostic test and is of little utility in my opinion. The level of 16 is normal.
Sydney/Basil: I haven't heard much about sarcoidosis in the last year. I am very much interested in anything new. I have the disorder in my left eye and had it in my lungs. Thanks to my doctor, it is now gone from my lungs.
Manuel_Ribeiro,_MD: It’s nice to hear your lung sarcoidosis is better. The options for sarcoidosis in your eyes depend on the specific type of inflammation you have there. For example, if it is only on the front of your eye, eye drops alone should be fine. If it is on the back of your eye, you may need more medication to control it.
LCBradley: My chest X-ray came back clear, and I have been diagnosed with sarcoidosis. Is a chest X-ray pretty reliable?
Joseph_Khabbaza,_MD: Chest x-rays do have utility in sarcoidosis, but I think it is hard to diagnose sarcoidosis with an x-ray alone. You would generally need a CT scan of the chest and then a biopsy that would be consistent with sarcoidosis. If the x-ray alone is suspicious for sarcoidosis, and you have no symptoms and just signs of larger lymph nodes, then you can be presumed to have sarcoidosis, which can just be monitored a few times a year for symptoms and x-ray changes.
kbaby85 : Can you have a flare up of sarcoidosis in any organ or part of the body and still have a normal ACE level? I'm currently being treated with methotrexate 2.5mg x 7 and folic acid 1mg for nail sarcoidosis. My real question is: Can something else mimic nail sarcoidosis with the same pain, discoloration and appearance? I'm being treated for nail sarcoidosis currently, and this has been an issue for six months now. I'm losing my nails; they're all turning dark and brittle and very painful. It would be nice if you had a way I could upload a picture of my fingernails.
Manuel_Ribeiro,_MD: Yes. You can have a flare of sarcoidosis and still have a normal ACE level. The ACE test, as most of the tests, is not perfect. The answer to your other question is also yes. Other diseases can have similar presentations as sarcoidosis. No nail finding is specific for sarcoidosis.
hgdarnell: How do you determine the stage of our condition, e.g., Stage II versus Stage III?
Joseph_Khabbaza,_MD: Sarcoidosis staging is very different than that of cancer staging. The staging refers to sarcoidosis of the lungs only. A Stage II chest x-ray shows some enlarged chest lymph nodes and some changes in the lung tissue, while Stage III only shows lung changes.
cteeps34: Does sarcoidosis have an effect on your SED rate and CRP?
Joseph_Khabbaza,_MD: Sarcoidosis can potentially cause some elevations in these variables. These labs are not terribly helpful, though, because they are non-specific markers of inflammation. We generally do not follow them in sarcoidosis.
tsiliffe: What is the best test for neurosarcoidosis?
Manuel_Ribeiro,_MD: Neurosarcoidosis can present in many different forms. Depending on the specific form, different tests are indicated. Some examples of those tests are MRI of the brain, MRI of the spinal cord and lumbar puncture. However, not every patient needs all of those tests.
Virtually Vitamin D
BeautyIsHerName: I was prescribed Vitamin D, and I also take methotrexate by injection. Why should I not take Vitamin D while on methotrexate?
Manuel_Ribeiro,_MD: Excellent question. In general, you should not take Vitamin D if you have sarcoidosis because your sarcoidosis can cause an increased level of active Vitamin D in your body. If you take extra Vitamin D, you can end up with too much Vitamin D and calcium in your system. It is not related to the methotrexate, but to the sarcoidosis itself.
bkacz: My immunologist has me on a Vitamin D supplement. I expressed concern because I've had hypercalcemia in the past with seizures. My level was 8, and she assured me they would monitor it. I'm to take it for three months, once a month.
Manuel_Ribeiro,_MD: In general, we avoid Vitamin D supplementation in sarcoidosis, especially if you had hypercalcemia. One option is to check the active form of Vitamin D (1,25 Vitamin D). If that one is low, then it’s probably OK to take the Vitamin D supplementation.
Cammie: I saw where you mentioned not to take Vitamin D when on methotrexate treatment. I am currently not taking any medications for sarcoidosis. Is it OK to take Vitamin D?
Manuel_Ribeiro,_MD: If your sarcoidosis is inactive or resolved, and you don't show high levels of active Vitamin D (1,25 vitamin D) in your blood work, it is OK to take it.
Lpgabarb: Are probiotics, Vitamin D, calcium or magnesium contraindicated with sarcoidosis?
Joseph_Khabbaza,_MD: That would depend on whether the sarcoidosis was active and if elevated calcium is part of the sarcoidosis manifestations. Generally, if sarcoidosis is active, Vitamin D and calcium are not recommended. Your levels would be followed periodically. In stable disease that is not being treated or not active, you can supplement if your levels are found to be low.
mdtrent12: Can sunscreen help avoid Vitamin D absorption while out in the sun?
Manuel_Ribeiro,_MD: It could, but there is no recommendation to do that in sarcoidosis. Vitamin D is important for your body. The only thing we recommend in sarcoidosis is to avoid extra Vitamin D supplementation.
The Latest News
kkmercer85: Have stem cell transplants had any success for pulmonary sarcoidosis?
Joseph_Khabbaza,_MD: There are case reports of stem cell transplantation being helpful in sarcoidosis, but mainly in patients with types of cancers that require the stem cell transplant, not performed due to sarcoidosis.
Dkbucks11: My retina specialist suggested ACTHAR as an alternative to prednisone, and said it would have fewer less side effects. What is your take on this alternative?
Manuel_Ribeiro,_MD: ACTHAR-Gel is an option for the treatment for sarcoidosis, approved by the FDA. It probably has fewer side effects than prednisone. We are currently enrolling patients in a study to try to answer this question.
tbawt: I have heard that sarcoidosis is now classified as an inflammatory disease versus an autoimmune disorder and that there are some similarities being found between proteins found in TB and sarcoid. Therefore, there is some suggestion that more of an antibiotic treatment strategy versus immunosuppressant therapy is the way to go. Is this accurate? Is it still too new? Is it something that is being trialed and how is that going?
Joseph_Khabbaza,_MD: There have been some studies that looked at this association, but nothing has showed any benefit to an antibiotic strategy at this time. Any study that may be evaluating this currently is small and in its early stages.
derekl: What's the latest on the ARA290 trials to treat small fiber neuropathy?
Manuel_Ribeiro,_MD: We are no longer recruiting for the ARA290 trial. So far, there’s been no evidence we should start using it clinically in our patients.
Dkbucks11: Is there any scientific progress in the treatment or even cure of sarcoidosis? Does CRISPR have hope to resolve some of the symptoms or develop a cure?
Joseph_Khabbaza,_MD: It is too early to know how CRISPR will play a role in sarcoidosis. Immune suppression can cure sarcoidosis in many. It is the one-third of patients who do not respond to immune suppression or need to be suppressed for a long time that can be a challenge. IV infliximab has been shown to be beneficial in some of those patients, but right now there is not much else that has shown to be promising.
Dkbucks11: This is a question I'm sure all of us want to know the answer to. Is there any scientific progress or studies underway to better treat this disease and maybe even cure it?
Manuel_Ribeiro,_MD: Yes. There are many studies going on to try to identify the specific cause of sarcoidosis and what is the best way to treat it. We are enrolling patients in some of those studies here at Cleveland Clinic. For more information, visit our Sarcoidosis Center. Information specifically about Cleveland Clinic research trials may be found here: my.clevelandclinic.org/departments/respiratory/depts/sarcoidosis#research-clinical-trials-tab
LCBradley: This live chat has been very helpful and enlightening. Thank you for this forum.
Joseph_Khabbaza,_MD: Thanks for logging in.
Seriously: This was an amazing chat. Thank you very much.
Manuel_Ribeiro,_MD: You are welcome. Thank you for participating.
That is all the time we have for questions today. Thank you, Dr. Khabbaza and Dr. Ribeiro, for taking time to educate us about sarcoidosis.
On behalf of Cleveland Clinic, we want to thank you for attending our online health chat. We hope you found it to be helpful and informative. If you would like to learn more about the benefits of choosing Cleveland Clinic for your health concerns, please visit us online at http://my.clevelandclinic.org.
Call and request an appointment today with one of our sarcoidosis doctors locally at 216.444.3613 or toll-free 866.783.3679. To make an appointment with Cleveland Clinic’s Respiratory Institute, please call 216.445.6503 or visit us at http://my.clevelandclinic.org/departments/respiratory.
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