Re: idiopathic pulmonary fibrosis

[Guest guest]

,

Welcome to Breathe Support! I'm so sorry to hear of your diagnosis with this horrible disease. There are many people here who understand how you are feeling and what you are going through.

I am 50 also and was diagnosed with fibrotic nsip (another form of pulmonary fibrosis) in June of 2006. I also have an adult son. (well as adult as any 24 year old male ever is) I've been on prednisone (as have many here). For me it was well worth the side effects. At one point I was on 100mg per day. I've been off totally since I think February of 2007 and fortunately have remained relatively stable. I've been on Imuran for most of the last year. My current dose is 150mg per day. After initially struggling a bit with nausea, I've had absolutely no other side effects. I have bloodwork done once a month to check my liver function but so far all is well. The Imuran is being used to treat my dermatomyositis an auto-immune disease that is the likely cause of my pulmonary fibrosis.

I don't know where you are located but my strong recommendation would be to seek out specialists in interstitial lung disease. If you go to www.ipfnet.org you will find 22 university medical centers that have ILD departments. How were you diagnosed? CT scan? Hopefully high resolution ct scan. Have you had bloodwork done? Have they screened you for auto-immune/connective tissue disease? Have they done and echocardiogram to look for pulmonary hypertension? All of these things are pretty standard and will help give you a full picture of what is going on in your body.

I'm not familiar with all the ins and outs of traditional chinese medicine but I'm all for anything that supports your overall health and well being. There is not currently any stem cell therapy for pulmonary fibrosis that I know of. There is research being done but an actual therpy is a ways off yet. The most important thing I can say to you is take really really good care of yourself. Eat well, get plenty of rest and find out how you can exercise safely. Ask your doctor about pulmonary rehabilitation. It will help you learn to live with this lung disease.

Once again welcome aboard!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 26, 2009 9:16:40 PMSubject: idiopathic pulmonary fibrosis

Hello to you all, I am a 50 year old mother of 2 adult boys and was diagnosed with this horrible disease in the middle of July. They started me on 40 mg. of predinzone. Boy was that a trip. I am completely off of it and will not ever go back on it too many side effects. Was on it for about 3 months. I am also doing Chinese medicine. Had seen my chinese medicine doctor 3 weeks ago and thought things were just a little bit better. But saw my pulmonologist Wednesday and my diffusion tests are down to 21 now dropped 7 points in 6 weeks. That is how they are measuring my progression. All I know is that I went in a tail spin because now they want to try Immuran 50 mg daily for 2 weeks and then 100 mgs daily then on. What does anyone think. I am going to continue the Chinese medicine as there isn't much that Western Medicine has to offer you know

what I mean. also looking into maybe stem cell therapy

[Guest guest]

I have never tried chiness medicine, I tried homeopatic, but unfortunately didnt work for me.

Subject: idiopathic pulmonary fibrosisTo: Breathe-Support Date: Monday, October 26, 2009, 8:16 PM

Hello to you all, I am a 50 year old mother of 2 adult boys and was diagnosed with this horrible disease in the middle of July. They started me on 40 mg. of predinzone. Boy was that a trip. I am completely off of it and will not ever go back on it too many side effects. Was on it for about 3 months. I am also doing Chinese medicine. Had seen my chinese medicine doctor 3 weeks ago and thought things were just a little bit better. But saw my pulmonologist Wednesday and my diffusion tests are down to 21 now dropped 7 points in 6 weeks. That is how they are measuring my progression. All I know is that I went in a tail spin because now they want to try Immuran 50 mg daily for 2 weeks and then 100 mgs daily then on. What does anyone think. I am going to continue the Chinese medicine as there isn't much that Western Medicine has to offer you know

what I mean. also looking into maybe stem cell therapy