Re: Need Some Help Please

[Guest guest]

Hi specialnascarlady,Tomorrow is too soon to do a lot of research. But, if you have time look at the effect that RA has on your lungs. The inflamation causes scar tissue (fibrosis). I have lupus which is a cousin to RA. In fact my RA was positive. After my biopsy the rheumatologist worked closely with my pulmonologist to get me on the best medications. I was given Immuran to calm down the autoimmune disease, but was later switched to Cellcept. I have taken many medications and nebulizers over the years, but the med that has prolonged my life is Cellcept. It is only FDA approved for transplant rejectiion....but my doc took a chance and it worked. I am 8 years from diagnosis. I am now in end stage, but have a good productive life yet. I pray that your doctor will be helpful to you. Let us know what he says. >> I started this about a year ago, went into ER difficult breathing ONE > night. Came back as having pneumonia, about 2 weeks later my family > physician called and said I had swollen lymph nodes in lung. Went in > for another CT scan, no change in size, had a PFT done, came back > with Asthma,so next CT scan scheduled for 6 months later, referred to > Pulmonoligist, he thought it was related to possibly having RA, so > went to my mother's RA doctor had intensive blood tests taken, the 2 > doctors Pul and RA decided that he was not related to RA and sent me > to a Thoracin Surgeon. After Lung biopsy he put me on Celebrax 200 > mg/day. My RA dr wants me on Fossamax - was taking predisone 10mg a > day for 60 days due to inflammation in hands. > > Dr said it would take 5-8 weeks from biospy to get results. I > unfortuneately live in KS, Dr's and Hosp not good. Dr did say from my > high res CT Scan that it was ILD didn't know which one. Says it is in > both lungs all over. But I really don't feel I having breathing > issues. It has only been a week since the biopsy, so I was wanting to > know what questions that needed to be asked, so I can get as much > info as possible. > > I am going to a follow up with my surgeon after the biopsy done on > Thursday January 19th, my appt is tomorrow afternoon, I need to know > what questions to ask the dr. Please help don't know what to ask > this doctor. Please help. Thanks.> > Thanks>

[Guest guest]

Hi again,

Try this site for information on Interstitial Lung Disease secondary to

Rheumatoid Arthritis. There are links to look through also.

Just remembered that my surgeon did not have much to say about continuing

treatment. He just sharpened his knife for the next fellow, HA!

Be sure to ask for a copy of your surgical record. I get copies of everything.

The surgical report will give details of the actual surgery. It was very

informative.

I have learned over the years that I have to manage my own disease and I have to

educate myself to treatments available, etc. The very reason that I came to

this site.

That and to meet and support nice people like you!

Joyce

>

> I started this about a year ago, went into ER difficult breathing ONE

> night. Came back as having pneumonia, about 2 weeks later my family

> physician called and said I had swollen lymph nodes in lung. Went in

> for another CT scan, no change in size, had a PFT done, came back

> with Asthma,so next CT scan scheduled for 6 months later, referred to

> Pulmonoligist, he thought it was related to possibly having RA, so

> went to my mother's RA doctor had intensive blood tests taken, the 2

> doctors Pul and RA decided that he was not related to RA and sent me

> to a Thoracin Surgeon. After Lung biopsy he put me on Celebrax 200

> mg/day. My RA dr wants me on Fossamax - was taking predisone 10mg a

> day for 60 days due to inflammation in hands.

>

> Dr said it would take 5-8 weeks from biospy to get results. I

> unfortuneately live in KS, Dr's and Hosp not good. Dr did say from my

> high res CT Scan that it was ILD didn't know which one. Says it is in

> both lungs all over. But I really don't feel I having breathing

> issues. It has only been a week since the biopsy, so I was wanting to

> know what questions that needed to be asked, so I can get as much

> info as possible.

>

> I am going to a follow up with my surgeon after the biopsy done on

> Thursday January 19th, my appt is tomorrow afternoon, I need to know

> what questions to ask the dr. Please help don't know what to ask

> this doctor. Please help. Thanks.

>

> Thanks

>

[Guest guest]

Ooops! forgot the link.....sorry....sleepy. Here it is:http://arthritis.about.com/od/rheumatoidarthritis/a/rheumatoidlung.htmGoodnight!--- In Breathe-Support , "specialnascarlady" <no8lover33@s...> wrote:>> I started this about a year ago, went into ER difficult breathing ONE > night. Came back as having pneumonia, about 2 weeks later my family > physician called and said I had swollen lymph nodes in lung. Went in > for another CT scan, no change in size, had a PFT done, came back > with Asthma,so next CT scan scheduled for 6 months later, referred to > Pulmonoligist, he thought it was related to possibly having RA, so > went to my mother's RA doctor had intensive blood tests taken, the 2 > doctors Pul and RA decided that he was not related to RA and sent me > to a Thoracin Surgeon. After Lung biopsy he put me on Celebrax 200 > mg/day. My RA dr wants me on Fossamax - was taking predisone 10mg a > day for 60 days due to inflammation in hands. > > Dr said it would take 5-8 weeks from biospy to get results. I > unfortuneately live in KS, Dr's and Hosp not good. Dr did say from my > high res CT Scan that it was ILD didn't know which one. Says it is in > both lungs all over. But I really don't feel I having breathing > issues. It has only been a week since the biopsy, so I was wanting to > know what questions that needed to be asked, so I can get as much > info as possible. > > I am going to a follow up with my surgeon after the biopsy done on > Thursday January 19th, my appt is tomorrow afternoon, I need to know > what questions to ask the dr. Please help don't know what to ask > this doctor. Please help. Thanks.> > Thanks>

[Guest guest]

This web site has a pamphlet on Maximize time with Doc. Look in patient education www.pilotforipf.org specialnascarlady wrote: I started this about a year ago, went into ER difficult breathing ONE night. Came back as having pneumonia, about 2 weeks later my family physician called and said I had swollen lymph nodes in lung. Went in for another CT scan, no change in size, had a PFT done, came back with Asthma,so next CT scan scheduled for 6 months later, referred to Pulmonoligist, he thought it was related to possibly having RA, so went to my mother's RA doctor had intensive blood tests taken, the 2 doctors Pul and RA decided that he was not related to RA

and sent me to a Thoracin Surgeon. After Lung biopsy he put me on Celebrax 200 mg/day. My RA dr wants me on Fossamax - was taking predisone 10mg a day for 60 days due to inflammation in hands. Dr said it would take 5-8 weeks from biospy to get results. I unfortuneately live in KS, Dr's and Hosp not good. Dr did say from my high res CT Scan that it was ILD didn't know which one. Says it is in both lungs all over. But I really don't feel I having breathing issues. It has only been a week since the biopsy, so I was wanting to know what questions that needed to be asked, so I can get as much info as possible. I am going to a follow up with my surgeon after the biopsy done on Thursday January 19th, my appt is tomorrow afternoon, I need to know what questions to ask the dr. Please help don't know what to ask this doctor. Please help. Thanks.Thanks