Arava or Leflunomide Respiratory side affects

Unfortunately this particular post is more lengthy and technical in nature and may not be something the average reader is interested in, but I'm "telling our story" in hopes others who may need it, can search and find it....

In the disease Rheumatoid arthritis , certain parts of a person's immune system not only fight against disease, but fight against the person too. The affect is deterioration of bone in joints, up to the point of crippling and deforming, and swelling and inflammation that results in sometimes extreme and/or endless pain.

Drugs like Arava (and its generic, Leflunomide), are used to hinder these parts of the immune system from damaging and destroying...and in thousands and thousands of cases have brought a slowdown or even stop to the deterioration of bone, and relief from the pain. The claim they make is ...

"Arava proved to reduce signs and symptoms including morning stiffness and the number of tender and swollen joints. Patients in the controlled trials experienced significant improvements in physical function, such as gripping, reaching, walking, dressing, and rising from a chair. Feet and hand x-rays of those taking Arava in the trials showed that Arava can also slow down joint damage caused by the disease. "

As usual...there are possible undesirable side affects. With Arava the ones that seem more common include hair thinning/loss, diarrhea, elevated liver enzymes, and rash.

In the first quarter of last year when the doc added ARAVA to Mrs. Bean's regime of medications , the only adverse things experienced were small little spots of rash on many of her joints, and some hair thinning..but she was experiencing relief...there was little to no swelling and pain in the joints.

While the RA doc was mindful to keep a check on Mrs. Bean's blood for possible liver damage...What angers me is that nowhere in the process of starting her on this drug was it mentioned..."hey, there is another rare but potentially DEADLY side affect to this drug that it has a history of to watch out for...so if you start dealing with alot of odd respiratory issues...you need to be on guard and possibly reduce or discontinue this drug immediately"...

As summer began, several months had passed, long enough for us to no longer be connecting cause/effect,...when she developed a hard cough that was difficult to diagnose, all her blood counts and oxygen was fine and lungs on the xrays were clear but yet the cough persisted, violently. Finally after a visit to a pulmonary specialist, it was surmised that it was whooping cough..and that may be, since the times between coughing fits, she was perfectly fine, but when they would come on, they were extremely severe.

The summer and early fall, meant about 100 days of the harsh coughing before it would come to an end, though a nagging cough continued to appear. A few months later bringing us to my last post when, as we were mindful of the coming new year...

...it welcomed us with another onset of severe coughing and very little lung capacity to breathe in air, and based on a chest X-ray in ER she was diagnosed with bronchitis, they saw congestion in the bronchi but not in the lungs, so they sent her on her way with cough suppressant and a 5day zpack of strong antibiotic.

Fortunately 5 days later we went to our regular doctor and he ordered a contrast-enhanced CT scan angio pulmonary, it showed significant bilateral pulmonary infiltrate. She was given a shot of cortisone and the doctor changed her antibiotic medication to avelox and a generic for Bactrim DS...but none of it was making sense, she didn't have the normal symptoms or detection markers of common pneumonia.

That night I spent my night doing an immediate very intense research of all the facts available, and uncovered a common bond that she had with some other people using Arava...I'll share some of those here for the sake of others, because though this reaction to Arava does seem to be very rare...for those few, correctly identifying the source of the problem could make the difference between life and death. Information we were unaware of...

An excerpt from around 2002 in a carefully documented study published in Brazil in a Journal of Pulmonology....

"...We report the case of a 33-year-old female patient who presented with chest pain, weight loss and pulmonary infectious syndrome during the fifth month of monotherapy with leflunomide for rheumatoid arthritis, which advanced to respiratory insufficiency in the sixth month. Radiologic findings revealed pulmonary infiltrates in the interstice, as well as bilateral alveolar infiltrates (mainly in the upper and middle lobes) and scattered micronodules. However, no mediastinal abnormalities were detected. Leflunomide was suspended... After four months, the condition spontaneously and completely resolved, suggesting that the pulmonary complications seen in this case resulted from the use of leflunomide. "

Another reference , this time from Japan, in January 2004 ,in a report citing an Associated Press article in Tokyo had these excerpts....

"...Sixteen people developed interstitial pneumonia, a debilitating lung condition, after taking the drug. Five of them, aged between 57 and 71, subsequently died, Mr. Kikuchi said.....Overseas, the drug has been administered to some 400,000 people and 80 people had developed interstitial pneumonia..."

An Australian government site reporting back in 2000....

"To date, ADRAC has received 669 reports associated with the use of leflunomide, of which 142 reports involved respiratory symptoms. Twenty two reports describe one or more of the following serious reactions: pneumonitis (8), interstitial lung disease (9), lung infiltration (4), or pulmonary fibrosis (3). Although these 22 reports have used different medical terms, it is likely they have all reported the same condition, commonly called interstitial lung disease (ILD).
Among the 22 reports of ILD .... Four patients died. "

There are many other studies and references but this is enough to at least make someone aware of it. It appears Mrs. Beans happened to be one of those rare few..and has discontinued the Arava, and is continuing treatment. ..so we're hopeful this year won't be heavy laden with respiratory problems like last year was.