kmarie

Lung disease and prednisone

Posted on 04/22/09, 11:07 pm

I have been a life long asthma suffer. In Oct.2007 I as diagnosed with allergic broncopulminary aspergilosis. I have spent the better part off the last two years trying to fing answers and share with people who share my experiences. I have just started a Cause for ABPA and Aspergillosis on Facebook as well as Myspace. If anyone could add anything at all to my new facebook Cause I would appeciate it. I am just trying to reach out in all directions to try an create support and a forum to share and learn
Thank you
Kimmy

• Reply #1 08/22/09  2:03pm
  
  alleneirb
  Hi. This is all new to me ... never joined blog before, but feel so alone with this illness and medication, looking forward to others input. Was recently diagnosed with irreversible restrictive bronchiolitis lung disease. Am on 40 mgs of Prednisone diaily to treat me for "quality of life", the message delivered by the doctor not too positive, but for now I can at least breathe since on Prednisone, but fear what will follow with side effects. The effect on bones and eyes my biggest concerns for now. How are you doing?
• Reply #2 08/25/09  4:17pm
  
  cornwall50
  I will try to make this short. In March I had an echo that showed pulmonary hypertension, started seeing a pulmonologist who after a negative sleep study looked at my lung ct and found what he felt was interstitial lung disease. Started on Prednisone 60mg daily at thatt time. Now I am down to 40mg every other day. The first thing I noticed was a rapid weight gain of almost 20 pounds. For someone who is already overweight that is not good. The next thing I started to notice is some vision changes. I am scared of this drug, but it seems to be helping the respiratory problems. Where do you draw the line between the value of the benefits versus the negative unintended results? I will continue to follow the doctors orders because I would rather breathe than be skinny, and as long as I can use glasses to deal with vision changes things are manageable. I am open to any suggestions on coping with this that anyone has.
• Reply #3 09/09/09  2:00pm
  
  alleneirb
  I've been on 40 mgs of Prednisone since mid July 09, they plan on weaning me off in October and putting me on an QueVar, an inhalant (still a Prednisone med I believe)which would go into my lower airways ... pretty confusing. At first the 40 mgs of Pred made me feel almost normal, better than the horrible 2 years prior to tahat in fact, but now notice that its positive effects are starting to lessen, having difficulty after walking around house or minor movements, etc., unlike when first went on it. Also when I first went on the 40 mgs it made me feel happy, almost giddy, but notice also that is waning as well. I had lost so much weight before being diagnosed with the lung disease that I was too frail for most testing or treatment, but have gained some back .. but heavier for me is better than frail. Waiting to see dr. at next appt. and see where we go with this. I do worry about the potential for major vision or diabetes problems, but each day is a gift to be able to breathe, so hanging in there but trying to stay informed so I can be a part of the decision making on my treatment. I'm trying to find hobbies or interests that keep my mind off the problem full time and focus on being happy, not easy to do, but like most things other than the illness we have, some thoughts you choose can be more beneficial to coping and healing. Hang in there .. its so nice to know we're not a lone in this.

This group is for the many of us that are on Prednisone and hate it! Yes, it heals what ails us, but it also creates another batch of problems!