hello. I recieved an email from a family member just a few weeks ago that said are you in the hospital again? I wasn't at the time, but it gives you an indication of my life. I don't have a diagnosis. My Dr has come to many times and said"I know what this is!" but the special test for that disease never shows it. Myasthenia Gravis, Porphyria, Alpha 1 Antitripsin Deficiency. My history is years long. I am 33. had 'asthma' during my young childhood that went away for many years. Until 13-14 or so when I went to dr for chest tightness. was told it was in my head. no tests. Have had IBS symptoms since teen. sudden almost uncontrolled urgency. Severe headaches at 16..19-20 yr dr said I had IBS. no tests. Began taking asthma meds again at 21. no tests. first kidney stone during my pregnancy with my now 8 year old. 2 years later lithotripsy done on huge stone. found after 3 weeks of being told it was a muscle strain treated with pt. Then muscle weakness..functional paralysis. Inpatient, treated with IVIG mestinon test positive no thymoma. Clear spinal tap. possible sero negative MG? Guillian Barre ? months of therapy and i could go back to work. got a bug in my ear was given ativan symptoms returned for another month. ok for a few years. then the breathing issues came on. bad short of breath. given prednisone..severe unrelenting abdominal pain. hospitalized. released. Another reathing episode a month later same story, given pred. but put in hospital for breathing. Abd pain returns. EGD negative. 5 days later released. Had dystonic reaction to phenegran. Saw gi dr said it was a muscle issue and given shot in stomach..now i havd two kinds of pain. refuse to go back. Saw pulmo. though resp fuction tests are off the wall wrong, says its not asthma. Not Alpha 1. Not emphysema. just periods of flares. still breathing issues to this day. Dr will not prescribe pred due to reaction issues. 1.5 weeks ago woke up with severy knuckle pain. swelling. waited a few days went to dr. says all these things have to be related. drew 8 vials of blood. says its autoimmune. doesnt know how to treat cuz of my med issues. no pred. no new drugs cuz i react. did diagnose my Raynauds cuz I had pictures. next appt on next wed. to hear blood results. I hurt. oh said I would be finally referred to Rheum. not one in my area so prob will have to wait. I am in small town MN I will travel anywhere though for answers.
We have all, at one time or another, asked ourselves "Why Me?". All auto-immune disorders are heinous and Lupus is one of the most heinous of them. I am so sorry to hear that you have been suffering for so long without any real answers and with so many adverse reactions to medications.
Prednisone is one of the best therapies for many of the Lupus symptoms. However, since you react badly to the Prednisone, your doctors may want to try you on immunosuppressant drugs:
1) Azathioprine, mycophenolate, and cyclophosphamide are the most common immunosuppressive medications used to treat severe kidney disease associated with lupus.
2) Methotrexate is used to control skin rash and joint pain caused by lupus. It may be tried when other drugs such as NSAIDs, antimalarials, or low-dose corticosteroids (Prednisone) have not brought relief.
3) Mycophenolate mofetil is effective in suppressing the immune system's action, and may be effective in relieving chronic skin lupus that has been resistant to other medications. It is also being studied for treating lupus kidney disease.2 Some doctors use mycophenolate instead of or after treatment with cyclophosphamide.
Also, doctors may prescribe disease-modifying anti-rheumatic drugs (DMARDs). These include a wide variety of drugs, including some typically thought of as chemotherapy agents, those that interfere with the function of lymphocytes or interleukins, and gold therapy. The DMARDs work on the underlying cause of Lupus, which is an autoimmune disease where the body in effect starts attacking itself. Decreasing the inflammation will decrease the pain over the long term, but pain can also be treated early on with anti-inflammatory agents such as ibuprofen and perhaps physical therapy.
With reference to your breathing issues, Lupus is a disease that causes inflammation in all parts of the body. As such, Lupus is well known for causing inflammation issues with the heart (Pericarditis) and with the lungs (Pulmonary Hypertension). I will give you information about both conditions so that you can have an informed discussion with your doctor:
Pulmonary hypertension is a lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries called pulmonary arteries rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.
The first symptom of pulmonary hypertension is usually shortness of breath with everyday activities, such as climbing stairs. Fatigue, dizziness, and fainting spells also can be symptoms. Swelling in the ankles, abdomen or legs; bluish lips and skin, and chest pain may occur as strain on the heart increases. Symptoms range in severity and you may not have all of the symptoms.
In more advanced stages of the disease, even minimal activity will produce some of the symptoms. Additional symptoms include irregular heart beat (palpitations or strong, throbbing sensation), racing pulse, passing out or dizziness, progressive shortness of breath during exercise or activity, and difficulty breathing at rest. Eventually, it may become difficult to carry out any activities as the disease worsens.
Many different types of medications are available to treat pulmonary hypertension. Treatment choices, such as those listed below, depend on the severity of pulmonary hypertension, the likelihood of progression, and your individual drug tolerance.
*Oxygen replaces the low oxygen in your blood.
*Anticoagulants or "blood thinners" such as warfarin sodium (Coumadin) decreases blood clot formation so blood flows more freely through blood vessels. Note: when taking anticoagulant medications, it is important for you to monitor bleeding complications and have regular lab work to monitor the level of medication in your bloodstream.
*Diuretics or "water pills" [such as furosemide (Lasix)] removes extra fluid from the tissues and bloodstream, which reduces swelling and makes breathing easier.
*Potassium (such as K-dur) replaces potassium (an essential nutrient) that may be lost with increased urination when taking diuretics.
*Inotropic agents (such as digoxin) improves the hearts pumping ability.
*Vasodilators [such as nifedipine (Procardia) or diltiazem (Cardizem)] lowers pulmonary blood pressure and may improve the pumping ability of the right side of the heart.
*Bosentan (Tracleer) helps block the action of endothelin, a substance that causes narrowing of lung blood vessels.
*Epoprostenol (Flolan), treprostinil sodium (Remodulin), iloprost (Ventavis) dilates pulmonary arteries and helps prevent blood clots from forming.
*Sildenafil (Revatio) relaxes pulmonary smooth muscle cells, which leads to dilation of the pulmonary arteries.
The hearts sits in the center of the chest and is surrounded by a sac called the pericardium. This sac has two layers, one that fits tightly onto the heart muscle and another looser layer surrounding the inner layer. Inflammation of these tissue layers surrounding the heart is referred to as pericarditis. Pericarditis can be acute or chronic.
Acute pericarditis may cause pain in the center of the chest which can radiate to the neck or left shoulder. Unlike angina or heart attack, this pain may be "sticking" in nature and worsens with deep breathing, coughing, or twisting of the upper body. Nevertheless, the pain at times may mimic that of a heart attack. When acute pericarditis is triggered by infection, fever, chills, and weakness also tend to occur.
Chronic pericarditis may not cause any symptoms until the long-term inflammation of the pericardium causes it to thicken and contract to the point where it interferes with normal heart filling. This condition is known as constrictive pericarditis. Pain may not be a prominent symptom, but symptoms that mimic heart failure may develop, including shortness of breath and edema (accumulation of fluid in the legs and abdomen), swelling in the abdomen because of fluid (ascites), and swelling of the liver.
Treatment of Pericarditis will depend upon the cause, the severity, and the symptoms. Analgesics (pain medications), ranging from aspirin to morphine, as well as anti-inflammatory drugs may be given to ease the pain or reduce the inflammatory reaction of acute pericarditis. No further treatment may be necessary for pericarditis caused by a viral infection, which tends to clear by itself within a few weeks. If an underlying treatable cause for the pericarditis can be identified (such as an auto-immune disease), further treatment will be directed towards its alleviation.
Antibiotics may be given for a bacterial or TB infection, while steroids and non-steroidal anti-inflammatory agents such as indomethacin may be given in other cases. Steroid drugs may also be prescribed to reduce the inflammation in pericarditis resulting from a heart attack. Diuretics and a salt-restricted diet are also recommended for constrictive pericarditis.
Although viral pericarditis usually resolves on its own, patients are sometimes admitted to the hospital for observation, particularly if there is any concern that something more serious could be causing the symptoms or if there is evidence of a large collection of fluid within the pericardial space. Viruses that cause pericarditis can sometimes attack the heart muscle and therefore, in rare cases, patients also develop heart-rhythm abnormalities or heart failure.
For most people who develop viral or idiopathic pericarditis, the disease is a temporary annoyance that is forgotten after it resolves. About one-fourth of patients, however, develop subsequent episodes of pericarditis, recurring at intervals of weeks or months. In these patients, anti-inflammatory agents can usually control the symptoms.
A small number of patients develop so much fluid that their hearts cannot beat effectively. In these instances, the fluid must be removed by an experienced cardiologist or cardiothoracic surgeon.
Rarely, patients can develop chronic scarring of the pericardium, which can be severe enough to keep the heart from expanding normally in between heart beats. Since the heart cannot fill adequately, the heart's ability to supply blood to the rest of the body slowly declines as the scarring gets worse. This problem is called constrictive pericarditis and often requires surgery to "strip" the pericardium away from the heart.
I realize that this is a lot of information and a bit much to absorb. I do hope that you find it helpful, however. Please let us know if you need anything further, we are here to help you in any way that we can and to make sure that you know that you are not alone.
Peace and Blessings
thank you for the reply. The lady I saw this week was not my normal dr. Hopefully that will end up to be a positive thing. My normal Dr has lots of ideas but they usually peter out. She has mentioned sending me to the Mayo many times, but then I start to get better and out it goes. They are in the same clinic though so all tests and notes are redily available to each other. I do not have any skin involvement besides dyshydrosis. very mild break out, but the itch is intense! never even mentioned that to dr though. I have not been at my new job long enough to qaulify for FMLA so I suspect I will be getting canned here shortly. The issues you mentioned in your post are very thought provoking. I wonder why we have never pursued my heart as a reason of my breathing issues. Recently my pulse has remained high, used to be normal in 70-80 range and now I am over a 100 at all times. usually blamed on meds. Its funny reading this site because so many things sound like me, but then so many times I have felt like that before. I told the dr I wish she would try prednisone again, and I may push that next week. I had taken it many times in the past without the reaction I got the last two times. The other drugs scare me, but really what choice is there? I really would like to have a name for my illnesses so people believe me. I dont know why that is so important, but sometimes the side looks are very disheartening. Really.