Very new to this site. Frustrated by a diagnosis of Pumonary Fibrosis. Currently on 30 mgs of prednisone (for about 7 mos.) Still young enough that I don't like the long term affects. Anyone know of any different drugs to stop the scarring of my lungs. I know there's nuclear medicine out there or as a last resort a lung transplant. I'm currently in rehab exercising which has seemed to help. My weight is of definate concern, but one of the side effects of prednisone is weight gain. Does anyone out there have experience with this disease. I'm hungry for information. Thanks.
I know a bunch about pulmonary fibrosis. I have a question for you, what was happening to you that made you go to the doctor to get investigated for PF? Were you constantly short of breath? I know that you are on prednisone now--is it specifically for the PF, or did you have another condition? There are other immunosuppressant drugs that you can go on--I'm pretty sure that they won't keep you on prednisone for the long haul.
Over the years, I had a dry hacking cough that I would periodically get checked. (doc would listen to my lungs, check out sinuses, chest x-ray) There was never an explanation for why I always seemed to cough. Last December started the shortness of breath. Not continuously. Going up stairs and exertion. They did a scan and that showed the scarring and then we did a biopsy which confirmed the diagnosis.
My pulmonologist says if the prednisone makes a difference, I may be on it for awhile. I would prefer to be on a much lower dose, but at the moment I'm stuck at 30 mgs. What other drugs are out there that treats the cause of the scarring? We need to get to the bottom of what's attacking my lungs.
I'm sorry the info I can give you isn't more positive. I cared for my husband for two years before he finally lost his courageous battle against this horrible disease. He was on 40 mg of pred the whole time but it didn't seem to do much good. The fact that you are in rehab is a very good sign. There are other experimental drugs out there you can try but since they are experimental they can be hard to find. Talk to your pulminologist about getting into some studies with new drugs. If he/she does not give you satisfactory answers or does not seem to know a lot about the disease FIND ANOTHER DOCTOR!!!! We went through 3 before we found one that we liked and that truly did fight for my husbands life as hard as we were. Do NOT give up!
So sorry to hear of your problem. My husband has been dealing with interstitial fibrosis since Jan. of this year. He had a quadruple by-pass in Nov. 2002, at which time his heart went out of rhythm, he was put on Cordarone medicine. Unfortunately, without the proper follow-up by his surgeon, the dry hacking cough, shortness of breath, weakness and no desire to do anything all attributed to my husband being put the lung transplant list. The cordarone made the fibrosis, which we were never told he had, actively progressive. If the doctors and nurses in the hospital would have listened to my complaints, maybe he would be feeling better and not have this problem. He was put on 30mg. of prednisone at the start, at which time went up to 100mg. He gained 40lbs. in one month, and had to be hospitalized for PCP. He has come a long way, right now he is on 7.5mg. of prednisone, still on oxygen 24/7, but has been pushing himself to exercise more and more. I just want to tell you that maybe some of the med's you might be on can cause uncontrolable diseases like my husbands. If it weren't for me reading up in the pill book for side effects of his medications, I might not have my husband today. I could still here the surgeons nurse telling me to give my husband Robitussin for his dry hacking cough. I hope you ask questions, and don't be afraid of the prednisone, like I said my husband has been on it for 8 months now...good luck.
For all of us that are suffering with ILDs or IPFs - there is an organization here in Chicago that is helpful. They have a web-site - it's www.pulmonaryfibrosis.org. I'm feeling that it's best to be as educated as you can about what you're going thru. Know your meds, know the side affects, ask questions. It's a total learning process - And don't give up!
For a long time I kept having episodes where my lungs would fill with fluid and the doctors couldn't figure out why. They said at first it was Congestive heart failure but a cardiocathederization finally showed that this was not the case so after a few days in the hospital in June 2003 I was diagnosed, after an open lung biopsy with pulmonary fibrosis. I am currently on 30m of Prednisone and 100m Cytoxan. The Prednisone has given me a diabetic condition so I have to watch my blood sugars. The docs are trying to wean me off the Prednisone and stay on the Cytoxan, which is for me but the catch to Cytoxan is that i get very weak to the point of shaking when I stand or walk. The Prednisone seems to be the one giving me strength. I first started with the shortness of breath 4 yrs ago and I was told this was from sleep apnea. I have been misdiagnosed so many times or told it wasn't a serious condition that now I am on 4-6 liters of oxygen all the time. You didn't say oif you had oxygen therapy or not. keep on exercising it does help. Good Luck, Mona
I'm on oxygen mostly at night and as needed for exercise. 2 litres so far. Keep up the faith. I don't like taking any of this stuff because of the affects it has on the rest of the body but I guess it's a necessary evil....I am down to 20 mgs of prendisone and taking a diuretic for swelling. I'm hoping to go down to 10 but we're going to keep me here for 2 monthes or so. It's so frustrating...the misdiagnosing, the not knowing exactly what will help. Thank goodness we have a support team from around the USA. It helps to know were not alone.
I just want to give you all a word of support! I was diagnosed with IPF when I was 33. As a young, previously active mother of 2 kids and Rn, it was difficult to say the least. I was very fortunate to have a great doc that, after a open lung biopsy, refered me to the National Institutes of Health in Bethesda, Maryland. I was followed and treated through their research program for nearly 8 years.Of course, I received Prednisone at high doses, which is standard, and other medications. I did fairly until 1995 when I was listed for transplantation. I received a single lung in March 1996 and did fairly well for about 6 years, then had a double lung transplant in 2002. I am doing incredibly well.. for the first time since 1998 I do not have ANY issues with breathing! I breathe as if I were 20 again! I do take many medications, including just 5mgs of Prednisone, and many drugs for my transplant. I am now diabetic, due to the prednisone and Prograf (an anti rejection drug) but life is good, pretty normal and I am happy! My weight is normal now..after losing nearly 70 lbs. I hope none of you needs a transplant, and certainly not two like me, but the main thing is to be strong in your heart, ask questions, keep your body as strong as you can (which I know is not always so easy when you have IPF..) do what you can to keep your weight as normal as possible, and if the time comes that it is recommended you have a transplant.. don't be afraid! It IS a big procedure, and an even bigger comittment, but at least from my perspective.. it has been worth it! I have seen my kids grow into fine adults, have made many friends, and I embrace this second (and now third) chance at life that I have been given!
I will be happy to answer any questions you might have about IPF, transplantation.. and living with lung disease for nearly 15 yrs...
My husband is 32 years old and he has interstitial lung disease/pulmonary fibrosis in both lungs that is caused from arthritis in his lungs. If your pulmonary fibrosis is also caused by arthritis, then doctors could be treating that.
Last edited by smileyshea; 03-23-2007 at 07:58 AM.