Sarcoidosis: Queries and Responses

Tenth Annual Conference and Town Meeting

Drs. Ganesh Raghu and Doug Paauw

If a person has one form of Sarcoidosis, might they develop another form?

ADr. Paauw – In general, if a person has one type of skin sarcoidosis, like lupus pernio, Hutchinson’s plaque or scar sarcoid, that is the type that is usually seen. One exception is of an individual who has lupus pernio and later receives a scar, then scar sarcoidosis can develop in that scar.

Can Sarcoidosis involve bone and muscles?

ADr. Raghu – By definition, Sarcoidosis is a disorder of unknown cause that can involve multiple systems, including tissues and organs. Therefore bones and muscles can be affected. Ninety percent of those with Sarcoidosis will have lung and thoracic lymph node involvement. Only 3-5% of those with Sarcoidosis have bone and muscle involvement. Bone lesions can occur in the outer lining of the bone, in areas of the skull, the distal phalanx of the fingers and the toes.

When muscles are affected, they become weak, but do not cause pain. An example of weakness in the muscles is when the diaphragm, an important muscle in the breathing process, is affected. If granulomatous tissue develops in the specific area of the spinal cord, which controls the diaphragm, that muscle can become paralyzed, severely compromising the function of breathing.

Do pulmonary hypertension and pulmonary fibrosis relate to Sarcoidosis?

A:  Dr. Paauw – The pressure in the pulmonary vessels of the lungs is usually a low pressure system. Pulmonary hypertension (PHT) occurs when the lungs start to shrink or get destroyed by pulmonary fibrosis. This results in the small blood vessels of the lungs also being destroyed and pressure in the system rising. This is very hard on the heart, because the heart is used to pumping blood into the lungs with no pressure against it. With PHT, there is a lot of pressure. Consequently, the heart can enlarge.

The symptoms that a person with PHT would have are the same as the type of symptoms that one with pulmonary fibrosis would have: i.e. a lot of trouble breathing, especially while walking. The other symptom some people would experience is chest pain. But, chest pain can be present with pulmonary fibrosis, or be a complication of other physical ailments.

What are the symptoms of Sarcoid involvement in the joints and ligaments?

A:  Dr. Raghu – When joints are involved, there is pain, which is called arthralgia. When there is inflammation, as defined by a particular type of cell invasion, which leads to erosion in the joint spaces, that is called arthritis. Arthralgia means pain in the joints. Arthritis means inflammation of the joints. One will not have arthritis when there is arthralgia and one will always have pain when there is arthritis.

Arthritis is associated with Sarcoidosis. The majority of the people with Sarcoidosis will have non-specific aches and pains; but those will not be specifically associated with active inflammation. Only 15-20% of the patients with Sarcoidosis will have arthritis. A problem is that symptoms, that mimic rheumatoid arthritis (RA) without having the serological (blood) antibodies and the skeletal manifestations of RA, are identified as arthralgia. Ligaments are not specifically involved with Sarcoidosis.

Can fatigue upon awakening and/or throughout the day, be related to pulmonary fibrosis (PF) and reduced oxygen in the body, or to Sarcoidosis?

A: Dr. Paauw – Usually it depends on whether the situation is being treated with oxygen or not. If the person has been using supplemental oxygen during sleep and oxygen levels are O.K., it would not be expected that they would be extremely fatigued upon awakening. Some people, as they progress through the day and exert themselves more, without receiving any supplemental oxygen, or receive an inadequate amount of oxygen, can get more tired with increased exertion. Certainly the increased fatigue with exercise is a concerning symptom for some physical ailments.

I’ve heard about peripheral nerve damage caused by Sarcoidosis and its “electro-shock feeling”. Can you address that?

A:  Dr. Raghu – Neuro-Sarcoidosis -involving the nerves – is one of the most difficult and challenging problems of Sarcoidosis. Since we have not yet identified the etiology (cause) of Sarcoidosis, it is unclear why certain nerves become involved. The large cranial nerves are more likely to be affected. The 7th cranial nerve, which controls the facial muscles and those of the mouth, lips, eyebrows and cheeks, is commonly involved. The nerve’s involvement can become suddenly evident and will produce the symptoms of Bell’s palsy. It is an acute syndrome. Less involved are the small nerves which produce the neuropathy of diabetes.

Granuloma can attack the myelin sheath – the covering – on the outside of the nerves, which causes the non-specific symptoms like tingling and pain. This feeling is then manifested as numbness, a neuropathy like that of diabetes.

It is very hard to prove this particular problem as being caused by Sarcoidosis. It could be multiple other causes, like Vitamin B, or B6 deficiency. It could also be due to the presence of diabetes. Sarcoidosis is a diagnosis of exclusion. In a known Sarcoidian, it is important for the neurologist to distinguish the cause of the numbness and tingling. Electrical studies, such as EMGs are conducted in such cases.

If the conclusion is that of Sarcoidosis, then the challenge becomes what to do about it. If the decision is to treat, how is it to be treated?  The treatment itself can become problematical. The patient’s overall health is an important factor in preparing the treatment plan.

Even though corticosteroids are known to have many side effects, prednisone is still the treatment of choice for neuro-sarcoidosis. It is an extremely potent anti-inflammatory.

A recent development in the search for more precise diagnostics regarding neuro-sarcoidosis is that the lymphocytes found in fluid extracted in the course of a lumbar puncture (spinal tap) of a patient with suspected neuro-sarcoidosis, can be analyzed in search of certain markers of sarcoid-like activity.

What can be done about Sarcoid-related arthritis?

A:  Dr. Paauw – The most important factor to help relieve the pain of arthritis without medication – especially if the arthritis is in the knees and hips – is weight loss. Weight is a huge, huge risk factor for the progression of arthritis. Anything that can be done to reduce weight, is very, very important. The other is exercise and strengthening the thigh muscles. It’s been proven that up to 50% of the pain in the legs can be relieved by improving the quadriceps.

As far as medications, there are not a lot of great prescription drugs that address the pain of wear and tear arthritis (osteoarthritis). Some of you may be familiar with chondroitin and glucosamine. They are natural products that may help a little with the pain and theoretically may slow the progression of the disease. Clinically, they have not proven effective in halting the disease’s progress. The most common drugs used to alleviate some of the pain, are ibuprofen and the non-steroidal anti inflammatory drugs (NSAIDs).

Is fibromyalgia a side-effect of Sarcoidosis, or is it a form of Sarcoidosis?

A:  Dr. Raghu – Fibro means fibrous (connective) tissue; mya means muscle and algia means pain. So, pain involving muscles and ligaments (fibrous tissue), if you will. Aches and pain do not come with Sarcoidosis. Is fibromyalgia a specific disease, or is it a disorder?  It is an important question.

The aches and pains which occur in patients with fibromyalgia are so non-specific, that  unfortunately there is no gold standard of lab testing that one would do. But, it is a real problem. Because clearly, certain people do have these aches and pains at very specific points. One can touch and press on those points and elicit reproducible aches and pains. That is called point tenderness. It is considered as a very typical characteristic manifestation of fibromyalgia.

Fibromyalgia is a diagnosis of exclusion, just like Sarcoidosis is usually a diagnosis of exclusion. A certain percentage of individuals with Sarcoidosis have those aches and pains.

Is it just a simple association or is it simply a separate disease which occurs in the patient with Sarcoidosis? It is unclear. An example of the latter is that of a Sarcoidian with diabetes. Is the diabetes then associated with Sarcoidosis? Usually not. Therefore, the problem of  fibromyalgia occurring with Sarcoidosis may simply be a coincidental situation. It then becomes a bit of a psycho-social aspect of the situation.

Fibromyalgia is a true problem with its aches and pains. Only one person can relate to those aches and pains … not the patient’s physician, not the patient’s family members, only the patient. Only she or he can tell how severe the pain is. There is no way that we can put a number to the degree of the pain, because pain is a very subjective problem.

If fibromyalgia is simply an association of Sarcoidosis, how can we then identify the difference between Sarcoidosis causing the pain, which it can, or is fibromyalgia the cause?

It can be very difficult for a physician to determine if the aches and pains are truly aches and pains, or if they are psychological pain. It would be easier to prove the existence and association of aches and pains with Sarcoidosis if there were a test that could be performed. The results could then guide the physician in monitoring the progression of the condition and subsequently develop a treatment plan for alleviating the aches and pains.

Editor’s Note:

The synopsis of Dr. Paauw’s presentation at the 10th Conference on Sarcoidosis and professional biography were published in the January/February 2003 issue of Sarcoidosis Networking.

Dr. Raghu Comments on WASOG  

Dr. Raghu reported that at the recent meeting of WASOG (World Association of Sarcoidosis and Other Granulomatous Disorders), an interesting observation was made regarding Sarcoidosis. A small study was done in The Netherlands. Patients with Sarcoidosis and having fibromyalgia-type aches and pains had random skin biopsies taken from specific points of tenderness, as well as other sites.

The investigators found tiny nerve endings with inflammation and lymphocytes, which is characteristic of Sarcoidosis. The results of the study demonstrated that in those cases there were true lymphocytes involving the nerve endings.  So, for the first time we have scientific evidence with an explanation for the aches and pains.

Whether prednisone or other drugs will decrease the cellular infiltrates [considered] to be fibromyalgia is unclear.

It is unfortunate that sarcoidologists [sarcoid specialists] don’t have a clear explanation for the aches and pains that persons with fibromyalgia suffer, and rheumatologist don’t yet have an understanding of fibromyalgia itself.

In order to read what Patrick Reagan, M.D., a cardiologist at Virginia Mason, Federal Way has to say about Diagnosing Heart Desease please follow this link.

A lot of times, people need help to identify the signs 10 Warning Signs of Caregiver Stress. Pass this on to a Caregiver you know!


Scientists have sequenced the genome of a microbe that lives in the mouth and causes most of the cavities in the world. The bacterium, streptococcus mutans, sticks to the surface of teeth and subsists on a diverse group of carbohydrates. While metabolizing sugar and other energy sources, the microbe produces acid that causes cavities in teeth.

Source: Genome News Network, Oct 2002

Your companions are like the buttons on an elevator. They will either take you up or they will take you down. 

Source: God’s Little Instruction Book

Find out what your fitness rating is and don’t be fooled by ‘Fat-Free’ Foods! Are you trying to slim down by eating fat-free foods? Hold on to your grocery list—those items may not be as “guilt-free” as you think.!



The National Heart, Lung and Blood Institute (NHLBI), of the National Institutes of Health (NIH), is sponsoring a research study regarding the “Treatment of Pulmonary Sarcoidosis with pentoxifylline (POF)”. The study will evaluate the effectiveness of giving POF to patients with sarcoidosis currently taking steroids. Researchers will compare the results between patients taking steroids with POF and those patients taking steroids alone.

The NHLBI is actively recruiting male and female candidates, between 18 and 70 years of age, who are on corticosteroid therapy (i.e. prednisone).

Individuals with the documented diagnosis of pulmonary fibrosis, with or without ocular (eye) involvement, and interested in learning about the eligibility inclusion or exclusion criteria, should access the NIH website at To contact the Patient Recruitment and Public Liaison Office in Bethesda, Maryland, call toll free :(1).800.411.1223 or email: [email protected] .

I’m taking blood thinners. Why do I need to pay attention to my diet?


Everyone runs out of energy now and then. But there is a healthy way to keep energy and spirits up: Exercise.

Exercising doesn’t mean you have to run the Olympics or be a weightlifter – it just means doing what is right for you, to help stay fit. A short walk, going up or down stairs, even stretching – these are all things that will not only help keep you in good shape but can also give you a boost of energy when you’re feeling tired or run down.

Your doctor or nurse can help to give you ideas about what sort of exercise or physical therapy is appropriate for you.

Source: Coping With Pain Focus On Cancer, Vol 3, No 1, Winter 1993



New Listings


Sarcoidosis Chapter of Louisiana, meets every other month. Call Lori at: 504.454.4871


March 15, 2003


Cerritos – Annual Sarcoidosis Awareness and Education Day, call Dorothy for information. 562.809.8500

September 20, 2003


Annual Walk-A-Thon, in many areas coordinated by National Sarcoidosis Society, Inc.
For information about this in your area, call 773.536.7754

September 26-27, 2003


Seattle – 11th Annual Conference on Sarcoidosis, for detailed information call Dolores 253.891.6886

October 25, 2003


Memphis –  Sarcoidosis Seminar, call 901.766.6951


If you thought nosebleeds were kid-stuff, think again. Sure, getting knocked in the noggin by a foul ball can still spur a bleeder, but so can frigid temperatures, allergies, or high-altitude vacations. If you get a gusher, here’s what to do:

1. Sit down and tilt your head forward slightly. (Don’t lie down or tip your head back. The blood may run down your throat, making you gag.)

2. Use your thumb and index finger to pinch your nose closed just above the flare of the nostrils for ten minutes. Don’t let go, even to check whether the blood’s still oozing.

3. If you’re still bleeding, pinch your nose for another ten-minute stint. Try holding an ice pack against the bridge of your nose to constrict underlying blood vessels.

4. Once the bleeding has stopped, don’t blow your nose, strain, or bend over to lift anything heavy—all of which can trigger an encore—for the next 12 hours.

When To See A Doctor

If bleeding continues for more than 20 minutes, go to the emergency room. A doctor can stop the flow by applying a topical sealant, such as silver nitrate. See your physician if you get nosebleeds frequently. Although most are harmless, roughly one in ten signals an underlying condition (i.e. high blood pressure, diabetes, or hardening of the arteries).

Source: Health magazine, Nov/Dec 2000


SNA Board VP, Marilyn Larson and Exec. Dir., Dolores O’Leary, attended the 4th annual PIO (Public Interest Organization) meeting on Feb. 5, 2003, in Bethesda MD, at the NHLBI (National Heart, Lung and Blood Institute). The NHLBI is one of the 27 divisions of the NIH (National Institutes of Health), the Federal Government’s Division responsible for health research.

Dr. Elias Zerhouni, Dir. Of NIH, presented his vision for the future of the Division. His “Roadmap for Action” includes Advocacy, Treatment and Science. Dr. Zerhouni stressed that in this technological age, the many disciplines and groups supporting primary investigators in each research study, need to be recognized.

He also addressed President Bush’s request for 2% cuts in NIH’s budget for 2004. The Director emphasized the urgency for advocacy from the public  to deter the implementation of such reductions, so that NIH can continue to conduct research at its present level.

Dr. Richard Cannon, a Clinical Director at NHLBI stated that the progress with stem cell research with cardiac application may eventually negate the need  for bypass surgery. It was mentioned to attendees that stem cell transplantation for lung tissue is in the very early stages.

A panel discussion of PIO leaders gave an overview of  how groups can be instrumental in providing education and guidelines for physicians and individuals affected by rare disorders.

Breakout sessions emphasized the benefits of dialogue regarding research studies, between researchers and support/advocacy groups.

Larson and O’Leary visited Congressional offices to heighten awareness of the needs, concerns and issues of the Sarcoidosis and Rare Diseases communities. The listing by Soc. Sec. of Sarcoidosis as a disabling disease, and new Medicare regulations affecting Sarcoidosis and other Rare Diseases were discussed.

Congressional Aides stressed the importance of voters and constituents contacting  their elected representatives concerning budgetary issues and concerns affecting individuals with Sarcoidosis and other Rare Diseases.


In taking time for the things you enjoy, don’t overlook the value of a pet.

A pet – whether it’s a dog, cat, goldfish or iguana –can help you establish healthful habits or even benefit your health. For example, research show that dog owners are more likely to walk regularly than people who don’t have dogs.  Other  research suggests that pet owners may feel less lonely or isolated, even if they live alone. Because social isolation is a powerful risk factor for poor health, having a pet may help you live longer and better.

Robert Sheeler, M.D., believes strongly in the healthful impact pets can have on your life. Dr. Sheeler has a golden retriever, named Ranger, and three cats. Having all of them around helps him unwind after a long day at work, he says. In addition, the pets remind him and his wife to get outside and enjoy the outdoors.

“They remind you to live in the moment,” Dr. Sheeler says.

Edward Creagan, M.D., a cancer specialist, also says pets have an important role in his life. He has one dog and a cat at his home. “These creatures can bring a tremendous sense of peace and tranquility,” Dr. Creagan says.

Pet ownership isn’t for everyone. But the pleasure and companionship of an animal may be something to consider as one of the steps to a healthier, longer life.

Source: Mayo Clinic Health Information, Live Longer Live Better, 5-99

                Editor’s Note: There are now individual volunteers and organizations who
                train and certify therapy pets.  The animals and their companions then visit
                nursing homes, hospitals and homebound individuals.

Check here in order to read further on Exercise and Hypertension by Judi Sheppard Missett.