Sharing my one year history with IPF

[Joseph Lopez]

My name is Joe and I was diagnosed with IPF one year ago at age 74.  The pulmonary Doctor said I had lost 49% of my lung capacity.  He has only prescribed Albuterol Sulfate in a nebulizer twice a day. Although I experience shortness of breath and low stamina, my most persistent problem has been uncontrollable coughing. My primary care doctor has been prescribing various allergy medicines and nose sprays which do not help much. In November he prescribed a low dosage (10 mg) of prednisone and I had the best month since the start of the year. I stayed off of prednisone for the next 3 months, and the coughing conditions came back. I am now on a regular 10mg dosage once a day, and my persistent coughing has been reduced by around 80%. I feel much better because of it although I am not naïve enough to think it is curing anything. Everyone I see now remarks on my improved condition so it is not my imagination. I am not on oxygen and have not been prescribed either of the two IPF medicines. Although prednisone has kind of a bad rap for maybe long term effects, I currently experience no negative effects from it. This may not be for everyone, but my quality of life has improved greatly.

[Mark Koziol]

Hello Joe, thank you for sharing your experience. Ideally the prednisone is helping to reduce the inflammation in your lungs. It is a great but awful medicine. I too take prednisone. My dosage is 5mg a day but in my body it helps to fight rejection. I received a single lung transplant in December of 2015.  I am glad the medicine is helping to eliminate your cough. Coughing episodes are the worst for a pf patient. I can remember coughing for almost an hour at times. Joe, please keep in touch. Mark

[Steve Dragoo]

@jalrio

Hi Joe,

You may find many helpful ideas looking over some of the other forums here.  For example I killed the lung mucus and a lot of the cough with serrapeptase. Increased stamina with diet, water, and mild exercise, and a good B vitamin complex.  This disease is complicated and there are good clinical trials ongoing that may help you. Some use a class 4 laser, others a herbal remedy from Wei Laboratories – both are successful in my subjective opinion. Much more to discover here so welcome and enjoy.

Steve

[Michael Lamkin]

Hey Mark, I’m considering a lung transplant and hopefully will be able to qualify for the program. I know everyone’s different but can you tell me what your experience has been with regard to recovery from the surgery and post surgery medications? I have to admit I’m more than a little anxious about the whole thing.

thanks and take care

Mike

[Suzanne R Brennan]

Mark, my pulmonologist prescribes Baclofen (10mg each; twice a day) for me. It has really helped my cough but I have never seen anyone else who takes it. It was initially for MS but my doc prescribed it for my IPF cough and it works well.  My doc is at National Jewish Health and presumably has prescribed it for others as well.

[Mark Koziol]

Hello Susan, I have never heard of the medication you are taking, doesn’t mean it’s not a good one. There are many medications originally made to fix one problem but also able to help alleviate symptoms for another issue. Before transplant I didn’t take any medication except for OFEV. National Jewish Hospital is highly touted transplant center so I believe you are in good hands. Thank you for commenting today. If you ever have any questions we are here to help. Mark

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