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Well lets start with this. My Pulmonolgist says going on and off Prednisone Unequivacally cannot make this disease worsen, but I think he just might be wrong.
1) I think the doctors just don't know (they really don't know much about this disease at all)
2) I don't believe in coincidences
3) Here is what happen to me.
In June I was doing the Lance Armstrong Live Strong program at the YMCA doing 20 minutes on the NuStep and full round of the circut for arm and leg strengthing without Oxygen. I had been on Prednisone and wanted to come off it because I did not want to get fat or have the moon face. I really didn't think it was helping. I started the taper the 1st part of June. One week after being off entirely I was at St Joe Hospital with an infection of unknown origin. Newest Question was it even an infection or just a worsening of the disease? By the end of July I was up to 2 LPM at night and 4 upon ambulation and 24/7 usage. I went back on the Prednisone at the end of July. Because I was always on the wrong speed so to speak with the oxygen in November Dr G said OK to leave it at 4 lpm daytime and I wanted to go back off the Prednisone so we started the taper again. As I tapered down I started feeling worse, but thought it was the loss of the "fake" energy and the holidays etc. Well, we all know what happened, Jan 3rd I was back in the hospital, unable to breathe. I am now on 5 LPM at night and resting and kicking it to 6 to 8 when ambulatory. I am also back on Prednisone permenantly.!!!!!!!!!!!
Oh to go back again, but alas, I cannot go back, but if I can keep one person from cycling on and off Prednisone. That would be a gift to someone. If you make the decision to use it, then stay on it, period!!!!!!!!!!! Who really cares if you are fluffy and moon faced, better then dying.!!! I have seen at least a few others on message boards that also think their condition worsened after going on and off Prednisone. Why take the change, just make the decison to either not use it at all or that if you do use it, it is a life time choice. Remember short term use to clear and infection is different. If you use Prednisone for 14 days or less you do not have to taper. Enough on this for now.
My other thoughts this week.
I have been just waiting. It took me a while to figure this part out, but that's what I was doing, waiting for the other shoe to fall, waiting to get worse, waiting to start feeling like I am dying. I was being hyper viligant watching for signs and unwilling to use some of the medication for fear I would miss or mask a sign. I am done with this. I am not here to wait, I am here to live as best as I can till I am not here anymore. I have also been angry most of the week at all the little things, now I know this is part of the greiving process, but I was already there and beyond that point and I did not expect to go back. I think I am passing thru that stage pretty quickly, I feel less angry today so that pleases me. Maybe it's the baking, who knows, but I am feeling better except for the breathing part. It is still a struggle, but less so with the Morphine and Haloperidol. I find that I don't usually feel short of breath, but I eventually notice I am breathing with my mouth open, so then I take the drugs and it gets better.
I am most Thankful this week that I was able to take a field trip to Katherines Martin Luther King concert at school. She did a wonderful job and hearing all those children sing makes one heart burst with joy! It was beautiful! Katherine Teresa Powers of the H team, I love you with my whole heart.
Closing now to go listen to Willie sing Stardust and more. Talk Soon :^)
