Ideopathic Pulmanery Fibrosis/and Actimmune

[BOGEY]

My husband has IPF and has been taking injections of Actimmune 3x a week for four months. I would like to know if Actimmune is widely used in this country or is it experimental.He is also taking Prednisone 10mg once a day.

We have seen no inprovement in fact since his biopsy and  starting Actimmune he has lost wieght,appetite is not good,breathing is short and labored everytime he moves around.
He is very limited as to what he can do before he is gasping for breath. his pulse-ox was 92 last week.

I would like to know what is widely used by other patients,and what is helping the most. I know it can't cure this desease but it may hold the scarring where it is now.

Thank you, PUTTER/ BOBBIE

[National Jewish]

Idiopathic pulmonary fibrosis (IPF) is one form of interstitial lung disease (ILD).  This causes inflammation or swelling that leads to scarring of the lungs in the area between the air sacs and the blood vessels.  Steroids like PrednisoneŽ, are frequently the first medicine used.  For a small percentage of people, steroids will help decrease the swelling.  This will cause a dramatic improvement.

However, some people experience only partial improvement with steroids.  The response to treatment is related to the type of ILD and the amount of swelling present.  Follow up chest x-ray, exercise tests, and pulmonary function tests will help evaluate if you have stabilized or improved.  Improvement may not be seen for 6 to12 weeks.

Steroids are the most widely used medicine.  When a person is not improving with steroids other medicines may be used.  One of these is CytoxanŽ (cyclophosphamide).  Another is ImuranŽ (azathioprine).

In general, the improvement that people with IPF have had with the medicine that is currently available is much lower than we would like.  Because of this new approaches for this disease are aggressively being pursued.  ActimuneŽ (interferon gamma) is one of these new approaches.  At this time it is experimental for the treatment of IPF.  It is now being tried more widely in this country in hopes that it will decrease the swelling.

Please read our Interstitial Lung Disease MedFact at http://www.nationaljewish.org/medfacts/interstitial.html for further information.

[wicket 2]

TO; BOGEY,  
MY HUSBAND HAS THE SYMPTOMS OF IPF, THE DOCTOR IS WANTING HIM
TO GO FOR THE BIOPSY.  HOW MUCH SCARING DOES YOUR HUSBAND HAVE?
DID THEY SAY WHAT STAGE HE WAS IN?  IS HE ON OXGEYEN?  OUR
DOCTOR ALSO TOLD US ABOUT THESE INJECTIONS, I'M VERY CONCERNED
ABOUT THE SIDE AFFECTS ALSO....

MY HUSBAND IS 64 AND THIS CAME ON VERY SUDDENLY.  DID HIS?
THANKS
wicket 2

[BOGEY]

To Wicket 2

My husband has three small incesions.
He is in the beginning stages. We could see the scarring on the CT Scan prints. He is 69.

The flu like systems are there but not all the time.When I give him his injections we never know when they will come.
When he has them it starts with chills,and then a fever. He will take Tylenol go to bed wrapped in blankets until the fever breaks,and he sleeps for many hours. This is not all the time and we never know just when it is going to happen.

I have been asking his Dr. to give him oxygen because he has become very weak and his breathing is very labored.He can't walk
50 feet before he has to sit down and get some rest.
The Dr tells me he has to be at 89% on the Pulse/Ox meter before he can order oxygen,and my husband was 92% a week ago. Thats low
and he should have oxygen,but Medicare or the secondary ins.
won't pay for it.Can you believe that? Once they get an 89% reading then the Dr. can order the oxygen and Medicare pays for everything from then on, no cost what so ever to the patient.

I hope I have been of some help to you. Please stay in touch and we will help each other.

Bogey/ Bobbie         ***@****

[Delonhi]

My husband has been told he has end stage Idiopathic pulmonary fibrosis. We can not seem to find anyone with personal info about how this disease runs it's course.  There are alot of books telling us basically that he will run out of air. His blood/oxy level without oxygen is 41, with oxygen and sitting still he runs in the high 90's, moving about he is in the 70's. We aould really like to talk with someone who has had some experience with this disease. Someone who could tell us what to expect, what the process of this disease is. Not just book talk, but real talk.  If anyone out there can help we'd really appreciate it  Thanks Delonhi