Thank you Sue.  Yes, I was on (what I consider) a fairly high dose.  If memory serves me, around 20-40 mgs at any given time.  At the time, I had no idea about the side effect of hunger.  I didn’t realize for a very long time that I was eating so much due to this medication.  I am a foodie anyway, so it didn’t seem odd to me – until we went… Read more

After nearly 2 years on prednisone I gained 100 pounds (due to extreme hunger and never feeling full) plus increased cortisol production, extreme irritability, shakes (and I already have a tremor so it got markedly worse), and fortunately no bone density loss (I had a DexaScan to check bone density) and no diabetes (checked for that with… Read more

Great article Mark!  I have a question about boosting the immune system in one with a lung transplant.  It is something that comes up quite often.  Since those who have had a transplant are immunosuppressed, would boosting the immune system (say with diet) counteract this and cause potential problems with organ rejection?

I would definitely suggest calling your doc.  Also, check your oxygen saturation with your finger pulse oximeter.  Low oxygen saturation can cause headaches.  I hope your doc can help you find some answers and get relief.

We ALL need to be loud!  Speak out!  The best way to raise awareness about PF is to be active in talking to everyone you know.  Your voice may help someone in getting an early diagnosis for them or their loved one.  #LIVEwithPF #WHATMAKESMERAREPF #RareDiseaseDay

Hi Brian.  I am sorry for the late reply.  I just today received a notification from the PF News Forum system that I had a reply here that I was tagged on.  Gotta love technology.  🙂

The GERD issue has become a hot one. Back in 1999, Dr. Ganesh Raghu (one of the world’s leading experts in PF) wrote a paper about GERD and PF.  It wasn’t… Read more

I totally get what you’re saying.  The unfortunate reality is that everyone is dealing with something and it is ‘their reality’.  Each person’s life doesn’t stop sucking just because they know someone worse off than they are.  The important thing for everyone to remember – and sometimes we all need a reality check on this – is that there is… Read more

Hi Wendy.  As the caregiver (former caregiver) I do hope it’s okay if I interject my thoughts on this.

First of all, before I go to that, I do want to say as someone who lives with chronic pain (back, knees, and feet) I totally understand the difficulty of the holiday season.  Each year gets more and more difficult.  Last year, it took until… Read more

Raising awareness is SO important and for years, we have been trying to get an alignment on colors.  Years ago, the PFF had blue and red and then they changed to the blue and green they have now.  I tried to align the Breathe Support Network with the blue and green as well, and so have the pharma’s.  However, much of the rest of the PF world is… Read more

Charlene and everyone dealing with PF… I would recommend the PFF Summit in San Antonio in November if you can.  I have been to the Summit multiple times and not only is it a GREAT educational experience, it is also so wonderful to meet others in the PF community face to face.  There are a LOT of patients and caregivers there and it’s always so… Read more

There can be many reasons for a decline in DLCO, but he does need to talk with his doctor about this.  If he isn’t going to be able to see his pulmonologist for awhile, he should email in his medical portal if his clinic has one.  (Many do now.)  Otherwise, he should call and ask for a call back from the doctor or one of the staff to discuss… Read more

Another great resource for support for patients and loved ones is the Breathe Support Network at http://www.BreatheSupport.org.  The Breathe Support Network has 6 groups so there is something to fit everyone’s needs.  We have the main group, which is for anyone interested in or affected by PF, there is a patient only group, a caregiver only group, a… Read more

Another reason some may not be prescribed Prednisone on a regular basis is because they have IPF – the idiopathic form of PF.  It is now known that Prednisone does not usually do a lot of good in those with true IPF as there is not much inflammation.