The prednisone debate and the lung biopsy debate

[Guest guest]

These are both issues that each individual has to sort out for themselves. WE ARE ALL DIFFERENT. I was on high doses of iv steroids in the hospital and a high dose of oral prednisone at home for months. It saved my life and then stablized my disease. Would I recommend it for everyone? Absolutely not but it will help some people, even a small percentage of those with IPF respond favorably to prednisone. That's why some (including some doctors) feel it's worth a try. When I was on it I was fortunate in that I had a physician who was aggressive in helping me manage the side effects. I've been off pred now for nearly 3 years but I would do it all over again in exactly the same way if the need arose.

Some react miserably to prednisone and it does nothing for them. The frustration is intense and understandable. It's not for everyone and our physicians should explain the risks vs rewards before starting us down that road when at all possible.

Lung biopsy....yet another can of worms. I had one and would do it again because I gained useful information. Not everyone does. Unfortunately it's difficult/impossible to tell who will gain information and who won't. This is a very tough call and I would never tell someone do it or don't do it. What I would say is get yourself to an ILD (interstitial lung disease) expert and bring the issue up with that person. Would they recommend a biopsy and why? Gather as much information as possible in order to help you make your decision.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe Support Support <Breathe-Support >Sent: Wed, December 2, 2009 3:37:19 PMSubject:

Hi Patti, You are so right attitude is the way to fight this disease. Nothing will help the IPF.

There isn't any data to say prednisone helps.. my experience was prednisone does nothing for IPF. It is the BEST and the WORST drug. I have been diagnosed 5 1/2 years and am sure I had this 4 or 5 years before. I guess you have to live it to know these things that will help and what does not.. WE are all different so thing react differently but IPF is IPF.. I feel so bad for our sweet members that have a lung biopsy only to be told you have IPF or it is inconclusive. Infection is such a high risk. We don't hear that much about it because they don't make it through it.

I don't want to scare you or the other newbies but I am just so angry with this disease.

I guess I have said enough for now. I am sure I'll hear about this one.. LOL

Love & Prayers

Peggy, IPF 2004