No News is Good News

Hello my fellow followers! I'm feeling fine. I thought I was getting sick last week, but it was just a little cough that has gone away. Still on the same medicine and have a doctor's appointment in January for a follow up. Just waiting patiently for July so I can get off the Imuran and see what happens. Merry Christmas!

Listed!

I received a call from my doctor's office last week that I was on the list to receive the N1H1 Flu shot. I got it yesterday. Didn't hurt and my arm isn't sore. I couldn't lift my arm last year from the regular flu shot! Now I have to find out if I should get the "regular" flu shot! I hope not. I don't like needles! :)

Medication is working

I went to get a second opinion in September. He tested me for all kinds of autoimmune diseases. I tested negative. So, all I have is BOOP. He said to stay on the immuran until July. The doctors took me off steroids again. I am only taking 50mg of immuran. That makes me happy. I'm feeling fine, but am always getting cold sores!!!

requested up date

Sorry I haven't posted anything in a while. I am now on 5mg of prednisone and 100mg of imuran. I am getting a second opinion this month. I will let all you know what he says. I feel fine. I've gained weight, but I haven't felt exhausted like I was feeling earlier this summer. Last time I went to see the doctor, I had an x-ray and my lungs are clear. I'm hoping that the doctor I go and see may want to try something new and can help me loose weight. I'll post more when I come back from the doctor.

Update

The blood work came back and everything is fine, so I am now at 100mg of Imuran and we are lowering the prednisone to 15mg. I still get tired easily and take naps. I feel fine and am riding my bike 3 times a week.

not too much...yet

So just a quick update. I had blood work done today and will find out tomorrow. They are checking to see how my body is handling the Imuran. This is a routine check up. Over all I feel fine. I just get tired a little easier!

Was searching the net and found some more information on Imuran.

http://www.geocities.com/hotsprings/3468/suppress.html

Azathioprine (Imuran), an ImmunoSuppressive agent, commonly used in ChemoTherapeutic regimens for Cancer patients and to treat Rheumatoid Arthritis, has also been evaluated as a treatment for MS to stabilize the patient's clinical course.

Imuran is a medication which suppresses the Immune System. It is given orally to patients whose MS is progressing slowly and is sometimes given in combination with Solu-Medrol treatment.

It is not recommended for women who plan to have children. Imuran can cause Liver problems and Nausea - Long-term use of the drug may also result in an increased risk of Leukemia and Lymphoma.

There have been numerous clinical trials of Azathioprine as a treatment for MS over the past 20 years both in the US and abroad. The results have not been uniform, and the use of this agent as a treatment for MS remains controversial.

One reason for this is that the potential Side-Effects of Azathioprine include Severe Anemia or Leukopenia (shortage of White Blood Cells), Liver Damage, or long-term increased risk of developing malignancies such as Leukemia or Lymphoma. Some patients have not been able to take Azathioprine because of severe Nausea.

A summary of the results of 20 different trials of Azathioprine over the past 20 years using different patient populations, different doses and different protocols, yields mixed results. Some benefit, as noted by slowed progression or fewer relapses, was noted in 60% of the trials. There was no apparent benefit in the other trials.

The decision to use Azathioprine is a complicated one, and should be made by the physician and the patient together, after a discussion of the potential risks and benefits.

I Started Imuran!

I started taking Imuran Wednesday July 1.  So far, I feel fine!  Here are some links and info about it.

http://www.medicinenet.com/azathioprine/article.htm

GENERIC NAME: azathioprine

BRAND NAME: Imuran, Azasan

DRUG CLASS AND MECHANISM: Azathioprine is an immunosuppressant, that is, a drug that is used to suppress the immune system. It is used to treat patients who have undergone kidney transplantation and for diseases in which activity of the immune system is important. Azathioprine is a prodrug (a precursor of a drug) which is converted in the body to its active form called mercaptopurine (Purinethol). The exact mechanism of action of azathioprine is not known.

Like other immunosuppressants, it suppresses the proliferation of T and B lymphocytes, types of white blood cells that are part of the immune system and defend the body against both infectious diseases and foreign materials. For example, in the case of organ transplantation, immunosuppressants prevent the body from immunologically rejecting the new organ. In the case of autoimmune diseases (diseases caused by an abnormal immune reaction against the body's own tissues) such as rheumatoid arthritis, suppressing the immune system reduces the inflammation that accompanies immune reactions and slows damage to the joints caused by the inflammation.

PRESCRIPTION: Yes

GENERIC AVAILABLE: Yes

PREPARATIONS: Tablet: 50, 75, 100 mg. Injection: 100 mg

STORAGE: Azathioprine should be stored at 15-25 C (59-77 F) in a dry place and protected from light.

PRESCRIBED FOR: Azathioprine is used for preventing rejection of transplanted kidneys. Azathioprine also is used for the treatment of severe, active, rheumatoid arthritis in patients who do not respond to rest, aspirin, or other nonsteroidal antiinflammatory drugs.

Non-FDA approved uses for azathioprine include multiple sclerosis, where several clinical trials have shown decreases in relapses but no slowing in progression of the disease. There also is limited data on the safety of azathioprine in multiple sclerosis. Other non-FDA (off-label) uses of azathioprine include Crohn's disease, myasthenia gravis, chronic ulcerative colitis, and autoimmune hepatitis (in combination withprednisone).

DOSING: Azathioprine should be taken with food.

DRUG INTERACTIONS: Allopurinol (Zyloprim) that is used for treating increased blood levels of uric acid and preventing gout increases azathioprine levels in the blood which may increase the risk of side effects from azathioprine. Therefore, it is important to reduce the dose of azathioprine by approximately 1/3 to 1/4 in patients taking allopurinol. The use of angiotensin-converting enzyme (ACE) inhibitors to control high blood pressure in patients taking azathioprine has been reported to induce anemia (low levels of red blood cells) and severe leukopenia (low levels of white blood cells). Azathioprine reduces blood levels of the blood thinner, warfarin (Coumadin), and thus may reduce the blood thinning effect of warfarin. Safety and efficacy of azathioprine in children have not been established

PREGNANCY: Azathioprine can cause fetal harm when given to pregnant women and whenever possible should be avoided.

NURSING MOTHERS: Azathioprine is found in breast milk and should not be used in nursing mothers.

SIDE EFFECTS: The most common serious side effects of azathioprine involve the cells of the blood and gastrointestinal system. Azathioprine can cause serious lowering of the white blood cell count, resulting in an increased risk of infections. This effect is reversed when the dose of azathioprine is reduced or temporarily discontinued. Azathioprine can cause nausea, vomiting, and loss of appetite, which may resolve when the daily dose is reduced or divided and taken more than once a day. Azathioprine can cause liver toxicity (for example, in less than 1% of rheumatoid arthritis patients). All patients taking azathioprine require regular testing of blood for blood cell counts and liver tests to monitor for side effects of azathioprine. Other side effects encountered less frequently include fatigue, hair loss, joint pains, and diarrhea.

Imuran

So, the doctor wants me to be on Imuran for a year.  This medication has been successful for other BOOPERS! I met a nurse the other day that worked in a Pulmonologist office and has only met 3 other people with BOOP!  So, keep your fingers crosse, say your prayers that in a year I will get rid of this stupid condition!  :)  I have a cold and ear infection, so I have to wait until I am off the antibiotics to start!   OH!!!!! AND I have pink eye!!!  FUN for the WHOLE FAMILY!!  

What is BOOP?

This definition was found on webmd.com. 

General Discussion

Bronchiolitis obliterans organizing pneumonia (BOOP) is a rare inflammatory lung disorder. Symptoms of BOOP vary greatly from case to case and may include a persistent cough, flu-like illness, and difficult breathing upon exertion (dyspnea). The term bronchiolitis obliterans refers to the accumulation of masses or plugs of fibrous, granulation tissue that forms in the small airway tubes of the lungs (bronchioles) blocking (obliterating) the flow of air. Organizing pneumonia refers to the peculiar, distinct organization of the cells of the air sacs (alveoli) and air ducts (alveolar ducts) and accompanying in inflammation of the lungs (pneumonia). Individuals with BOOP experience inflammation of the bronchioles and air sacs simultaneously, which distinguishes it from other similar inflammatory lung disorders.

Although several different known causes of BOOP have been identified, most cases occur for no known reason (idiopathic). Idiopathic BOOP may also be called cryptogenic organizing pneumonia. Some researchers prefer the use of COP to avoid confusion with other lung disorders with similar names. The term cryptogenic denotes that the cause of the disorder is unknown. Other researchers prefer the term BOOP because it the most recognized term for the disorder.

Welcome to BOOP

I was diagnosed with BOOP November 2006.  My treatment started in the hospital and is still continuing today.  I want to start this blog to educate my family and friends and to find other fellow Boopers out there!  I've only met one person face to face! I've just started and will post more soon.