Some people with sarcoidosis develop hypercalcemia—high levels of calcium in the blood—which can become life-threatening if not aggressively treated.
If you have sarcoidosis, call your doctor immediately if you experience the following symptoms:
- mental confusion
- abdominal pain
- muscle or joint weakness or pain
- frequent urge to urinate
In rare cases, sarcoidosis can lead to lung or heart failure. If you experience such symptoms as sudden chest pain or difficulty breathing, you should seek emergency care immediately.
Other signs of a heart attack are:
- chest discomfort—crushing, squeezing, or pain in the center of the chest that lasts more than a few minutes or that goes away and comes back
- pain or discomfort in other areas of the upper body, such as the arms, neck, jaw, back, or stomach
- shortness of breath or difficulty breathing
- heavy sweating or nausea
- pale or bluish lips, fingernails, or skin
Other signs of respiratory failure are:
- difficulty breathing
- chest pain
- mental confusion.
Although there is no cure for sarcoidosis, you can do several things that may make living with the condition easier.
- Don't smoke. Ask your healthcare provider for medications and/or programs that can help you quit.
- Avoid exposure to dusts and chemicals that can harm your lungs.
- Get plenty of rest. Sarcoidosis can sometimes cause severe fatigue. Make sure you get a good night's sleep each night and, if necessary, take naps during the day.
- Take ibuprofen, or naproxen for fever, muscle or joint pain, night sweats, or painful skin lesions. Be sure to ask your doctor which medication is right for you, as taking aspirin with ibuprofen may eliminate the cardiac benefits of taking aspirin alone.
- If you have high levels of calcium in your blood, you may need to avoid calcium-rich foods (such as dairy products), vitamin D, or prolonged exposure to sunlight until the condition is brought under control. Talk with your doctor.
- Exercise as recommended by your doctor. If you become breathless, rest.
- See your doctor regularly. Even if you are feeling well, it is important that you keep all scheduled appointments. To monitor your condition, your doctor may want to take a blood sample or give you a breathing (pulmonary function) test.
- Don't stop taking your prescribed medications without first talking with your doctor. Going off certain medications suddenly can have serious health consequences. Even if your symptoms have subsided, you should continue taking your medications until instructed otherwise by your doctor. If you think your medications are causing serious or bothersome side effects, contact your doctor.
Your doctor is the best source of information on the drug treatment choices available to you.
If your lungs lose too much of their ability to function properly and you become unable to get enough oxygen naturally, you may need supplemental oxygen therapy. The extra oxygen can help you sleep better, improve your mood, increase your mental alertness, and enable your body to carry out its normal functions.
Supplemental oxygen is dispensed in the home in several ways. You could receive steel or aluminum tanks or cylinders of compressed oxygen gas. The tanks come in many sizes, including portable ones that can be easily used with oxygen-conserving devices outside the house. Liquid oxygen, which is made by cooling the oxygen into a liquid form, can be stored in even smaller containers. However, it's costly and must be used up quickly before the gas evaporates. You can also receive oxygen via an oxygen concentrator, an electric device that concentrates the oxygen that is already in the air. The advantages of this delivery system is that it costs less and is easier to maintain, primarily because it doesn't need refilling. But the oxygen concentrator is about the size of a large television set, which makes it non-portable.
Because oxygen can be toxic when delivered at very high levels over a long period of time, oxygen therapy requires a doctor's prescription.
Your doctor may also recommend that you receive pulmonary rehabilitation, a combination of exercise, behavioral, and educational programs designed to help you better control your lung-related sarcoidosis symptoms and improve your day-to-day activities. Most pulmonary rehabilitation programs have physicians, nurses, rehabilitation therapists, psychosocial staff, and dietitians working together. Your doctor will help you find a program near you.
Because corticosteroids may increase the body's loss of magnesium and potassium, you may benefit from taking magnesium supplements (300-400 mg daily). Be sure to talk with your doctor first.
If your sarcoidosis progresses despite treatment and severely damages your lungs, heart, or liver, you may become a candidate for organ transplant surgery. This procedure gives a person a healthy organ from a person who has recently died, or in certain instances an organ such as a kidney may be donated from a living person (e.g., a kidney transplant or a single lung—not the heart). Complications from the drugs needed to keep the body from rejecting the organ are high, however, and the sarcoidosis may later affect the new organ.
You should never use alternative therapies for sarcoidosis without first getting your doctor's approval. Some herbs can interfere with medications used to treat the disease. Ephedra sinica (Ma huang), for example, can reduce the effectiveness of corticosteroids, while licorice extract (Glycyrrhiza glabra) can worsen those drugs' side effects.
Don't take any supplements with vitamin D—including a multivitamin or a fortified food—without your doctor's approval. If you have developed hypercalcemia as a result of your sarcoidosis, taking vitamin D supplements could be life-threatening.
Women with sarcoidosis who are pregnant may find that their symptoms worsen after the baby is born. In some cases their doctor may suggest they have a chest x-ray within six months of delivery to check the progression of the disease. Women with sarcoidosis do not have more miscarriages or babies born with physical or mental problems than women without the disease.
The prognosis for sarcoidosis depends on the stage of the disease, the organs that have been affected, how extensively those organs have been affected, and whether or not the disease is responding to treatment. Table 02 In about two thirds of cases, sarcoidosis heals spontaneously, often without treatment. Most remissions occur within two years of diagnosis. If remission does not occur within this time period, the illness is likely to become chronic. Even then, however, the disease is seldom fatal. Most deaths that do occur are the result of respiratory or heart failure.
Table 2. Spontaneous Remission Rates Based on Stage of Disease
Stage Remission rates I 55% to 90 % II 40% to 70 % III 10% to 20 % IV 0 %
Your doctor will want to monitor the progression of your illness. The need to see your doctor will be greatest during the first two years after diagnosis, particularly if you are being treated for the disease. If you have stage I disease, your follow-up visits should take place at least every six months until the disease is under control or in remission; after that you should see your doctor once a year for a check-up. If you have any other stage of the disease, you should see your doctor every three to six months until the disease is under control, and then once annually.
Be sure to call your doctor immediately if you are experiencing any sort of difficulties with your medication (such as trouble taking medication as prescribed or unpleasant side effects) or if your symptoms worsen.
- Common Side Effects of AntidepressantsFind out about common and not-so-common side effects of antidepressants and how to manage them.
- How Drugs Can Lower CholesterolDiscover how cholesterol-lowering medications work in your body to bring your cholesterol numbers down to ideal levels.
- Do Over-the-Counter Proton-Pump Inhibitors Work?You might wonder why you need a prescription for GERD if many PPIs are available over the counter. Get the answers to this and other questions about OTC PPIs.