Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Barbara, I would only add that Bruce's response is one you should print and make yourself a list of questions to ask your doctor and things you need to accomplish. I do know how overwhelming this is but the very first thing you can do is find a pulmonologist who is knowledgable regarding interstitial lung disease and one that you are comfortable with, who will answer your questions and explain things so that you can understand them. This is critical and will serve you well in the time ahead. A teaching hospital with an ILD department is a place to start. I would just add and actually direct this to Bruce also. I was on Advair for over a year from around January of 2007 till April or May of 2008. It was originally prescribed by Dr. Simonelli at Columbia to help control my cough as I was coming off prednisone. Advair has fluticasone ( a steroid) and Dr. Simonelli felt that it could help control any cough that was caused by inflammation. I stayed on it for a long time as it definitely helped control the cough. I stopped eventually because dealing with thrush off and on and off and onn finally drove me a little crazy. So I'd say yes normally Advair is prescribed for things like asthma but there are times when it can be useful in situations where there is airway or lung inflammation. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wed, January 20, 2010 8:03:24 PMSubject: Re: Question BarbaraTo be blunt you need to get to another doctor if that is what he said.There are over 200 forms of PF, not 5. Now generally the doctors willrefer to them as Interstitial Lung Diseases (nearly all of which havefibrosis).Why did he give you the advair? Thats not typically prescribed for PFbut for obstructive lung diseases?Did they express a preliminary opinion as to the type based on the CTand the bronch?You say your PFT increased from 45 to 65. What reading do you mean? YourFVC, FEV1, DLCO, TLC? It could increase because you did better on thetest, it could be because you're in better general physical condition,it could increase because the Advair helped with a condition other thanPF such as Asthma or COPD? Have either of these ever been mentioned toyou? Pulmonary rehab could have accounted for some improvement. PFT'sare also not precise and will vary.The fact your sister has PF certainly makes one curious as to thepossibility of it either being familial or in some way caused byenvironment that you both were exposed to.Has a complete panel been run to check on any possible connective tissuediseases?How long have you been on the prednisone and how long were you prior tothe new PFT's?I don't know where you live or where you've been but I'd stronglyrecommend a teaching hospital with an Interstitial Lung Diseasedepartment such as the IPF Centers of Excellence. www.ipfnet.orgYou'll get a thorough diagnosis and complete understanding and then andonly then can you decide on the appropriate choices.I know I shot back with many questions and you don't have the answers tosome at least but they're all things you need to know. You need copiesof all your reports and you need to understand them. Being told you have45% or 65% means nothing if you don't know what it's referring to. I'malways glad to try to assist in answering anything as are the otherforum members.I won't bombard you with more in this response but pursue knowledge justas you are. You will face decisions and choices, but only can withinformation. Also, you so want to be sure what the diagnosis is to thispoint and then what would be gained by a biopsy other than pain andknowledge that you weren't going to use to change anything. I used mineto determine treatment, but you're already receiving treatment. Mostimportantly, another opinion before any decisions and get it at an ILDcenter in a teaching hospital.> >> > Hi , I do understand the SOB in your chest. I have had that fora> while. It started with a feeling that I couldn't get enough air even> though my sats were mid 90's> > I have quite a bit of that now and am using a nebulizer with> albuterol. That helps, then when it is muscle spasms I use themorphine.> I am pretty sure what you are experiencing is an advancement of this> monster.. My Dr. told me when my sats are good and my heart rate is> good, we know my heart is good.. It's the disease.. It can> > be very scary. The only way I know to help is to get really quiteand> try to breathe easy for 5 minutes or so. I am that way about all the> time now. I also turn my 02 up a little. I am about out of numbers on> this regulator.> > I don't realize it because it is now my norm. "I HATE THIS DISEASE."> >> > Read information about your heating pad. Mine says don't use inoxygen> enriched area... LOL I have been doing it for at least four years.Just> be careful.> > I may be having a rough time breathing but I am having fun with mygo> fast....... I have to get pics but I have to get dressed---boooo.> > lol Take care my friend> >> >> >> > Love & Prayers> > Peggy> > IPF, 2004> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Beth Thanks for putting that in on Advair as my response could have been misleading. I wouldn't have thought it unusual were it not for the other comments regarding the doctor. Certainly Advair can help as you pointed out. That could also account for improvement in PFT's if she had considerable inflammation the first time and the Advair and Prednisone helped with it. To Barbara regarding that: if the steroids reduce inflammation they can improve how you feel, breathe and reduce coughing. What they can't do is reduce the fibrosis. However, with certain forms by removing the inflammation they may stop or slow the progression of the fibrosis. Just as CT's and Biopsy's are diagnostic tools, your response to meds can be. By the way you respond they may very well be able to form a more educated opinion. > > > > > > Hi , I do understand the SOB in your chest. I have had that for > a > > while. It started with a feeling that I couldn't get enough air even > > though my sats were mid 90's > > > I have quite a bit of that now and am using a nebulizer with > > albuterol. That helps, then when it is muscle spasms I use the > morphine. > > I am pretty sure what you are experiencing is an advancement of this > > monster.. My Dr. told me when my sats are good and my heart rate is > > good, we know my heart is good.. It's the disease.. It can > > > be very scary. The only way I know to help is to get really quite > and > > try to breathe easy for 5 minutes or so. I am that way about all the > > time now. I also turn my 02 up a little. I am about out of numbers on > > this regulator. > > > I don't realize it because it is now my norm. " I HATE THIS DISEASE. " > > > > > > Read information about your heating pad. Mine says don't use in > oxygen > > enriched area... LOL I have been doing it for at least four years. > Just > > be careful. > > > I may be having a rough time breathing but I am having fun with my > go > > fast....... I have to get pics but I have to get dressed---boooo. > > > lol Take care my friend > > > > > > > > > > > > Love & Prayers > > > Peggy > > > IPF, 2004 > > > > > > Quote Link to comment Share on other sites More sharing options...
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