Fibrosis File

Our members with pulmonary fibrosis often ask us how they may enroll in a clinical trial being conducted for potentially safe, new medications and treatments. For those with access to the Internet, you may go to www.clinicaltrials.gov and find over 50,000 ongoing clinical trials; searching for those having to do with pulmonary fibrosis will give you over 300 results.

You should know a clinical trial is carried out in three phases.

  • Phase I is usually done with a small number of The researchers are trying to determine how much of the medication can safely be given
  • Phase II will monitor the effects of the medication on the
  • Phase III involves many more test subjects. The investigators want to compare how their new medication compares to medication currently on the They are also looking for any side effects that may appear while taking the drug.

When you enroll in the study, there is no guarantee that you will be given the new medication or treatment. You may be randomly chosen to receive a placebo, a harmless sub- stance that will have no effect on your pulmonary fibrosis.

Be prepared to return to the clinical center for follow up examinations after the trial has ended. Important long- term information can be gathered from these visits.

In our last issue, we asked people with pulmonary fibrosis to let us know what exercise gives them the most benefit.

I have recently been diagnosed with IPF and am controlled in a pulmonary rehabilitation program. I get the most benefit from the NuStep cross trainer,  arm  machine and free weights.

EJ Corcoran, Allison Park, PA

Ben Wall from California has found taking Viagra has increased his exercise tolerance.

I think doing arm exercises has helped me tremen- dously. I also walk my dog daily but I find lifting canned food as weights to work out my arms gives me more strength in my daily activities. Unfortunately, I have no way to get to a gym or pulmonary rehab program.

Floyd Marino, Florida

 Mary V. from New York finds exercise in the pool helps her the most.