Cytoxan/Imuran

[carefreesf]

My Mom (who is 58) has been diagnosed with Non-Specific Interstitial
Pneumonia (NIP). with leanings towards Hypersensitivity Pneumonitis.  We
have hopefully taken all the steps needed to separate her from the alleged
problem (her parrots).

She was started on Prednisone (60mg) back in June 2000 and was finally
tapered to 40mg where she has been since August.

We met with a pulmonologist here in San Francisco today who stated according
to her HiRes CT Scan today that there has been some mild improvements.   He
was rather shocked that her regular Pulmonologist in Texas has kept her on
this much predinisone for this long.  He believes that the benefits do not
outweigh the negatives she has experienced and has begun her on a tapering
schedule.

To continue to treat the NIP he is proposing starting her on either Cytoxan
or Imuran.  I have read up on the positives and negatives of both but would
hope that I could get some practical input from someone who is or has gone
through one of these treatments.

I also brought up with the Doctors here about a pulmonary rehabilitation
program.  It hadn't been suggested by her normal specialist (and yes we are
changing).   She currently lives in NM at about 4100 ft but  she does so
much better on her O2 sats here at sea level that she may move in.  (yikes
(grin))   Has anyone on here undergone such programs?

Thanks so much for your help.

Cary

[National Jewish]

Prednisone® is the drug used most often to treat your mom’s condition hypersensitivity pneumonitis.  There is not always agreement on how long to continue Prednisone® and at what dose.  There is probably not one right answer.  It is important that the Prednisone® dose be long enough and at a high enough dose to see the full benefit.  It can take 3 months or longer on Prednisone® for the symptoms to get better.
Imuran® (azathioprine) and Cytoxan® (cyclosphosphamide) belong to a group of drugs called cytotoxics.  They are used to decrease the activity of the body’s immune system.  This helps to lessen swelling in many different areas of the body, such as the joints in arthritis, the muscles in myositis, the blood vessels in vasculitis, or the lungs in hypersensitivity pneumonitis.  Sometimes these drugs are used alone.  More often they are used along with other anti-inflammatory drugs such as Prednisone®.  In some people Prednisone® works well to decrease the swelling but it also causes side effects.  The goal is to continue to control the swelling with little or no side effects.  Adding either Imuran® or Cytoxan® may keep the swelling under control.  Over time it may be possible to slowly decrease the Prednisone® sometimes to the point where none is needed.
While Imuran® and Cytoxan® can be effective they may also have side effects.  With proper monitoring these drugs can be safe.  Our experience suggests that most people who are helped by steroids but have bad side effects do well with the addition of Imuran® or Cytoxan® with less side effects.
Your mom would benefit from pulmonary rehabilitation.  This is a program to bring back your quality of life through education, aerobic exercise done on a regular basis and proper nutrition.  While she is exercising it would be important that her oxygen level be checked.  This is generally done by oximetry that measures the oxygen saturation of the blood with a sensor that clips to a finger or an earlobe.  When the oxygen is low, extra oxygen is given to keep the oxygen level normal.  In New Mexico at 4100 feet above sea level your mom may need extra oxygen.  At sea level she may need less and possibly not need any extra oxygen at all.

[starion]

Dear Friend,
Pulmonary rehabilitation programs have helped many with lung conditions live better, more comfortable lives with their lung conditions.  There is an education component in the program which helps the patients learn more about their condition(s) and how to best manage it, as well as sharing with other patients and medical personnel.  They are also monitored to be sure they are exercising an appropriate levels of exertion for their condition(s).
You might also wish to call the local branch of the American Lung Association to see if there are any support groups in your area.
As it seems you may have learned by now, high doses of prednisone, especially for extended periods of time, have very serious side effects.  I'm glad that the current doctor(s) are working with you in tapering this medication.

With regard to where best to live, it has been suggested that a lengthy vacation to the proposed new location before making any dramatic plans is good.  In particular, it's important to try to be in the new location during the "adverse weather" (particlarly very hot &/or very cold and/or pollens, etc.) to see how that affects the individual.  It's also important to consider uprooting & leaving friends, family, medical resources, etc. & what will replace them in the new location.

I'm afraid I don't know anything about either of the other drugs you mention, but I do wish you & your family the very best.  I'm sure the LungLine nurse will have more and better information.
Aloha,
Starion--thriving in HI