Perfinidone and this whole discussion

[Guest guest]

Getting the digest version of the postings, maybe I miss something now and then. But I don't understand why this discussion is even going on. Case in point. My first pulmonologist, over a year ago when I was diagnosed, prescribed Colchicene. It's basically a gout medicine but his feeling was if it breaks up some things, maybe it'll break up others, and it won't hurt, so take it. For a year I've been taking it twice a day, along with doing and taking other things, and I've not gotten any worse for a year, and as far as I'm concerned, as a person dying of IPF, not getting worse is a win! As of January 1 now, my insurance dropped colchicene as a formulary drug. Colchicene may work, or maybe not. But I've not gotten any worse and if there's a chance it's part of the reason, I want to keep taking it. So my doc argued it yesterday based on just that, and got it approved for me. Now here comes perfinidone. If it's approved, and if there's no harm in taking it, and there's a CHANCE it might do some good, bring it on. I really don't care about somebody's history with Wall Street. We educate ourselves and are our own best advocates, and we talk with our doctors. If there's a chance it might work, I should have the choice, and personally, I'd take the drug. If the whole thing I have to go by is "It can't hurt, and it might help", then that's good enough for me.

Bill C. IPF 10/08

[Guest guest]

Bill

I don't know of a single drug that fits into the " it may help and can't

hurt " category. Not even tylenol does that. All drugs have potential

side effects and with new ones they are less known. I'm glad you're

happy with Colchicine. It's a perfect example of a proven medication

being prescribed off label. However, while you've had no side effects,

Colchicine does have them for many people. (I can include myself in that

group based on the one time I was prescribed it).

Wall Street only came into play because of a quote saying Wall Street

was playing with Pirfenidone and Lives.

You also point out something else valuable in that you do not say the

Colchicine has helped, simply that for whatever reason, Colchicene or

otherwise, you haven't progressed and you'll take that anyday. There are

many doctors who believe it may have potential for pulmonary fibrosis

and have suggested clinical trials although none are yet active.

Ultimately, all treatment plans are a matter of choice, hopefully

informed choice.

Even " conventional medical wisdom " is subject to question in many cases.

I had an aunt and my mother had a friend who both had debilitating

arthritis and were virtually unable to function in any way. They went to

a doctor near us who was labeled by most as a quack and even ended up on

60 minutes. According to all other doctors I knew, his treatment didn't

and couldn't work. Except. The friend and my aunt both improved

dramatically and with periodic continued treatment were able to function

well for decades under his care. Perhaps the other doctors would have

been better served trying to figure out why his treatment did appear to

work in certain cases. Regardless, nothing else helped them so how could

one argue with going there, especially with the results.

>

> Getting the digest version of the postings, maybe I miss something now

and

> then. But I don't understand why this discussion is even going on.

Case

> in point. My first pulmonologist, over a year ago when I was

diagnosed,

> prescribed Colchicene. It's basically a gout medicine but his

feeling was

> if it breaks up some things, maybe it'll break up others, and it

won't hurt,

> so take it. For a year I've been taking it twice a day, along with

doing

> and taking other things, and I've not gotten any worse for a year,

and as

> far as I'm concerned, as a person dying of IPF, not getting worse is

a win!

> As of January 1 now, my insurance dropped colchicene as a formulary

drug.

> Colchicene may work, or maybe not. But I've not gotten any worse

and if

> there's a chance it's part of the reason, I want to keep taking it.

So my

> doc argued it yesterday based on just that, and got it approved for

me.

> Now here comes perfinidone. If it's approved, and if there's no harm

in

> taking it, and there's a CHANCE it might do some good, bring it on.

I really

> don't care about somebody's history with Wall Street. We educate

ourselves

> and are our own best advocates, and we talk with our doctors. If

there's a

> chance it might work, I should have the choice, and personally, I'd

take

> the drug. If the whole thing I have to go by is " It can't hurt, and

it

> might help " , then that's good enough for me.

>

> Bill C. IPF 10/08

>

[Guest guest]

bill

glad it might be working for you

glad your doc was able to get it approved for you

hope it continues to work

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Perfinidone and this whole discussionTo: Breathe-Support Date: Wednesday, January 6, 2010, 1:56 PM

Getting the digest version of the postings, maybe I miss something now and then. But I don't understand why this discussion is even going on. Case in point. My first pulmonologist, over a year ago when I was diagnosed, prescribed Colchicene. It's basically a gout medicine but his feeling was if it breaks up some things, maybe it'll break up others, and it won't hurt, so take it. For a year I've been taking it twice a day, along with doing and taking other things, and I've not gotten any worse for a year, and as far as I'm concerned, as a person dying of IPF, not getting worse is a win! As of January 1 now, my insurance dropped colchicene as a formulary drug. Colchicene may work, or maybe not. But I've not gotten any worse and if there's a chance it's part of the reason, I want to keep taking it. So my doc argued it yesterday based on just that, and got it approved for

me. Now here comes perfinidone. If it's approved, and if there's no harm in taking it, and there's a CHANCE it might do some good, bring it on. I really don't care about somebody's history with Wall Street. We educate ourselves and are our own best advocates, and we talk with our doctors. If there's a chance it might work, I should have the choice, and personally, I'd take the drug. If the whole thing I have to go by is "It can't hurt, and it might help", then that's good enough for me.

Bill C. IPF 10/08

[Guest guest]

To: Breathe-Support Sent: Wed, January 6, 2010 1:40:13 PMSubject: Re: Perfinidone and this whole discussion

BillI don't know of a single drug that fits into the "it may help and can'thurt" category. Not even tylenol does that. All drugs have potentialside effects and with new ones they are less known. I'm glad you'rehappy with Colchicine. It's a perfect example of a proven medicationbeing prescribed off label. However, while you've had no side effects,Colchicine does have them for many people. (I can include myself in thatgroup based on the one time I was prescribed it).Wall Street only came into play because of a quote saying Wall Streetwas playing with Pirfenidone and Lives.You also point out something else valuable in that you do not say theColchicine has helped, simply that for whatever reason, Colchicene orotherwise, you haven't progressed and you'll take that anyday. There aremany doctors who believe it may have potential for pulmonary fibrosisand have suggested clinical trials

although none are yet active.Ultimately, all treatment plans are a matter of choice, hopefullyinformed choice.Even "conventional medical wisdom" is subject to question in many cases.I had an aunt and my mother had a friend who both had debilitatingarthritis and were virtually unable to function in any way. They went toa doctor near us who was labeled by most as a quack and even ended up on60 minutes. According to all other doctors I knew, his treatment didn'tand couldn't work. Except. The friend and my aunt both improveddramatically and with periodic continued treatment were able to functionwell for decades under his care. Perhaps the other doctors would havebeen better served trying to figure out why his treatment did appear towork in certain cases. Regardless, nothing else helped them so how couldone argue with going there, especially with the results.>> Getting the digest version of the postings, maybe I miss something nowand> then.. But I don't understand why this discussion is even going on. Case> in point. My first pulmonologist, over a year ago when I wasdiagnosed,> prescribed Colchicene. It's basically a gout medicine but hisfeeling was> if it breaks up some things, maybe it'll break up others, and it won't hurt,> so take it. For a year I've been taking it twice a day, along withdoing> and taking other things, and I've not gotten any worse for a year,and as> far as I'm concerned, as a person dying of IPF, not getting worse isa win!> As of January 1 now, my insurance dropped colchicene as a

formularydrug.> Colchicene may work, or maybe not. But I've not gotten any worseand if> there's a chance it's part of the reason, I want to keep taking it. So my> doc argued it yesterday based on just that, and got it approved forme.> Now here comes perfinidone. If it's approved, and if there's no harmin> taking it, and there's a CHANCE it might do some good, bring it on. I really> don't care about somebody's history with Wall Street. We educateourselves> and are our own best advocates, and we talk with our doctors. Ifthere's a> chance it might work, I should have the choice, and personally, I'dtake> the drug. If the whole thing I have to go by is "It can't hurt, andit> might help", then that's good enough for me.>> Bill C. IPF 10/08>

[Guest guest]

Hi All,

I agree Bruce, its difficult to determine what is working and what is not when the best we expect from it is to stay stable. My Dr has suggested steroids and is willing to start me on them any time I want to. I have remained stable since Jan with out taking anything, (except NAC and Musinix) if I were using steroids I would be able to say "steroids have kept me stable" Its a difficult call. As Bruce says its an individual choice. Hopefully, an educated one, or a good or lucky guess. I am like Bill, I say "if it can't hurt", bring it on but, we must be certain "it won't hurt" or at least have a reasonable expectation there are no side effects, or the side effects are minimal or tolerable enough to be justified.

I mentioned in my last post that I was going to get a referral to Chicago because I had reason to believe I had Sarcoidosis. I since have talked to my Doctor and decided not to follow through with the idea. After talking it over, I see no reason for me to go. First, they will want to do a lung biopsy, which I refuse to do. Second, if it does turn out to be Sarcoidosis the treatment would be the same.......Predisone. Once again, I would refuse. So, what is the point? I'm sure I would be treated well and they would performe all the tests necessary, but the outcome would still be the same.

I have a PFT scheduled for the 14th of this month and an appointment with (the Dr that I talked to on the phone) my pulmonologist on the 28th of Jan. It is all pretty confusing and I seem to go in circles sometimes.

Beth....prayers out for your neice and your family

One good thing about this desease, I gives us all time to think and to enjoy each minute of each day where otherwise we would waste most of it not knowing the end is near. We get to Kiss our little grand kids and appreciate what we have and quit worrying about what we don't have. At least thats been the way it is for me.

Bob, 70, IPF 1/09, 5 bypasses 7/01

Subject: Re: Perfinidone and this whole discussionTo: Breathe-Support Date: Wednesday, January 6, 2010, 2:40 PM

BillI don't know of a single drug that fits into the "it may help and can'thurt" category. Not even tylenol does that. All drugs have potentialside effects and with new ones they are less known. I'm glad you'rehappy with Colchicine. It's a perfect example of a proven medicationbeing prescribed off label. However, while you've had no side effects,Colchicine does have them for many people. (I can include myself in thatgroup based on the one time I was prescribed it).Wall Street only came into play because of a quote saying Wall Streetwas playing with Pirfenidone and Lives.You also point out something else valuable in that you do not say theColchicine has helped, simply that for whatever reason, Colchicene orotherwise, you haven't progressed and you'll take that anyday. There aremany doctors who believe it may have potential for pulmonary fibrosisand have suggested clinical trials

although none are yet active.Ultimately, all treatment plans are a matter of choice, hopefullyinformed choice.Even "conventional medical wisdom" is subject to question in many cases.I had an aunt and my mother had a friend who both had debilitatingarthritis and were virtually unable to function in any way. They went toa doctor near us who was labeled by most as a quack and even ended up on60 minutes. According to all other doctors I knew, his treatment didn'tand couldn't work. Except. The friend and my aunt both improveddramatically and with periodic continued treatment were able to functionwell for decades under his care. Perhaps the other doctors would havebeen better served trying to figure out why his treatment did appear towork in certain cases. Regardless, nothing else helped them so how couldone argue with going there, especially with the results.>> Getting the digest version of the postings, maybe I miss something nowand> then. But I don't understand why this discussion is even going on. Case> in point. My first pulmonologist, over a year ago when I wasdiagnosed,> prescribed Colchicene. It's basically a gout medicine but hisfeeling was> if it breaks up some things, maybe it'll break up others, and it won't hurt,> so take it. For a year I've been taking it twice a day, along withdoing> and taking other things, and I've not gotten any worse for a year,and as> far as I'm concerned, as a person dying of IPF, not getting worse isa win!> As of January 1 now, my insurance dropped colchicene as a formularydrug.> Colchicene

may work, or maybe not. But I've not gotten any worseand if> there's a chance it's part of the reason, I want to keep taking it. So my> doc argued it yesterday based on just that, and got it approved forme.> Now here comes perfinidone. If it's approved, and if there's no harmin> taking it, and there's a CHANCE it might do some good, bring it on. I really> don't care about somebody's history with Wall Street. We educateourselves> and are our own best advocates, and we talk with our doctors. Ifthere's a> chance it might work, I should have the choice, and personally, I'dtake> the drug. If the whole thing I have to go by is "It can't hurt, andit> might help", then that's good enough for me.>> Bill C. IPF 10/08>

[Guest guest]

Bob

I guess its a choice you make not to go to Chicago for a second opinion.

I do, however, have a problem if your doctor has discouraged you from

doing so. Assuming what they would or would not want to do isn't

something I'd want to do. Might the information, even if not helpful

now, be helpful at a later point? I don't know. I found the trip

worthwhile even though it didn't change anything at that time. I'm

headed to Duke in a month and it may not reveal anything more. On the

other hand, it might at this point reveal something about other symptoms

and issues I'm experiencing. I guess I consider their expertise to be

valuable whether it just confirms what I know or changes something. If

you were found to have Sarcoidosis and your symptoms worsened, would

you also refuse Imuran? Would you say no to Plaquenil as well? You do

know there are ways to diagnose Sarcoidosis without a biopsy I hope. Not

saying you have it. What about other connective tissue diseases or NSIP?

We have many here on prednisone for various conditions but we have many

on other meds such as Imuran and Cellcept also. I don't know how you say

you know the outcome without making the trip? You might end up right but

that doesn't mean it is predetermined.

You say you would try a drug as Bill said " if it can't hurt. " Guess I'm

not sure what getting a second opinion somewhere like Chicago would

hurt? Seems to me " it can't hurt " either.

I'm sorry but I just feel you've been influenced through a conversation

with a doctor not to go and I do have problems with any doctors

discouraging additional opinions from experts. Perhaps I'm wrong and he

encouraged you but you decided not to go against his recommendation.

> >

> > Getting the digest version of the postings, maybe I miss something

now

> and

> > then. But I don't understand why this discussion is even going on.

> Case

> > in point. My first pulmonologist, over a year ago when I was

> diagnosed,

> > prescribed Colchicene. It's basically a gout medicine but his

> feeling was

> > if it breaks up some things, maybe it'll break up others, and it

> won't hurt,

> > so take it. For a year I've been taking it twice a day, along with

> doing

> > and taking other things, and I've not gotten any worse for a year,

> and as

> > far as I'm concerned, as a person dying of IPF, not getting worse is

> a win!

> > As of January 1 now, my insurance dropped colchicene as a formulary

> drug.

> > Colchicene may work, or maybe not. But I've not gotten any worse

> and if

> > there's a chance it's part of the reason, I want to keep taking it.

> So my

> > doc argued it yesterday based on just that, and got it approved for

> me.

> > Now here comes perfinidone. If it's approved, and if there's no harm

> in

> > taking it, and there's a CHANCE it might do some good, bring it on.

> I really

> > don't care about somebody's history with Wall Street. We educate

> ourselves

> > and are our own best advocates, and we talk with our doctors. If

> there's a

> > chance it might work, I should have the choice, and personally, I'd

> take

> > the drug. If the whole thing I have to go by is " It can't hurt, and

> it

> > might help " , then that's good enough for me.

> >

> > Bill C. IPF 10/08

> >

>

[Guest guest]

Bruce,

Actually my doctor said he has no problem with a second opinion, and sometimes he can learn from talking things over with another doctor etc. He did say he would rather recommend MSU over Chicago since he believes their facility is all as good as Chicago. He says getting insurance approval for a out of state facility is sometimes more difficult.

I will talk to him more about this on the 28th. He also said he'd be glad to recommend a second opinion from another pulmonologist locally if I wanted to do that. He said he did a test (that I was unaware of, I guess it was part of the blood work up) that indicated that I did not have sarcoidosis. He quoted some numbers, and I was mid range so that indicated no sarcoid but wouldn't totally rule it out. Again we'll talk more on the 28th. Thanks for the response Bruce.

Bob, 70, IPF 1/09, 5 Bypasses 7/01

Subject: Re: Perfinidone and this whole discussionTo: Breathe-Support Date: Wednesday, January 6, 2010, 8:58 PM

BobI guess its a choice you make not to go to Chicago for a second opinion.I do, however, have a problem if your doctor has discouraged you fromdoing so. Assuming what they would or would not want to do isn'tsomething I'd want to do. Might the information, even if not helpfulnow, be helpful at a later point? I don't know. I found the tripworthwhile even though it didn't change anything at that time. I'mheaded to Duke in a month and it may not reveal anything more. On theother hand, it might at this point reveal something about other symptomsand issues I'm experiencing. I guess I consider their expertise to bevaluable whether it just confirms what I know or changes something. Ifyou were found to have Sarcoidosis and your symptoms worsened, would you also refuse Imuran? Would you say no to Plaquenil as well? You doknow there are ways to diagnose Sarcoidosis without a biopsy I hope. Notsaying

you have it. What about other connective tissue diseases or NSIP?We have many here on prednisone for various conditions but we have manyon other meds such as Imuran and Cellcept also. I don't know how you sayyou know the outcome without making the trip? You might end up right butthat doesn't mean it is predetermined.You say you would try a drug as Bill said "if it can't hurt." Guess I'mnot sure what getting a second opinion somewhere like Chicago wouldhurt? Seems to me "it can't hurt" either.I'm sorry but I just feel you've been influenced through a conversationwith a doctor not to go and I do have problems with any doctorsdiscouraging additional opinions from experts. Perhaps I'm wrong and heencouraged you but you decided not to go against his recommendation.> >> > Getting the digest version of the postings, maybe I miss somethingnow> and> > then. But I don't understand why this discussion is even going on.> Case> > in point. My first pulmonologist, over a year ago when I was> diagnosed,> > prescribed Colchicene. It's basically a gout medicine but his> feeling was> > if it breaks up some things, maybe it'll break up others, and it> won't hurt,> > so take it. For a year I've been taking it twice a day, along with> doing> > and taking other things, and I've not gotten any worse for a year,> and as> > far as I'm concerned, as a person dying of IPF, not

getting worse is> a win!> > As of January 1 now, my insurance dropped colchicene as a formulary> drug.> > Colchicene may work, or maybe not. But I've not gotten any worse> and if> > there's a chance it's part of the reason, I want to keep taking it.> So my> > doc argued it yesterday based on just that, and got it approved for> me.> > Now here comes perfinidone. If it's approved, and if there's no harm> in> > taking it, and there's a CHANCE it might do some good, bring it on.> I really> > don't care about somebody's history with Wall Street. We educate> ourselves> > and are our own best advocates, and we talk with our doctors. If> there's a> > chance it might work, I should have the choice, and personally, I'd> take> > the drug. If the whole thing I have to go by is "It can't hurt,

and> it> > might help", then that's good enough for me.> >> > Bill C. IPF 10/08> >>

[Guest guest]

Bob

Well, thats good and I'd definitely get a second opinion whether from

MSU or Chicago. I would not recommend another local pulmonologist,

simply because I'd want an ILD center at a teaching hospital. I'm not

familiar with MSU and don't know if they have an ILD center nor anyone

who might have been there. I am familiar with the University of

Chicago's center.

> > >

> > > Getting the digest version of the postings, maybe I miss something

> now

> > and

> > > then. But I don't understand why this discussion is even going on.

> > Case

> > > in point. My first pulmonologist, over a year ago when I was

> > diagnosed,

> > > prescribed Colchicene. It's basically a gout medicine but his

> > feeling was

> > > if it breaks up some things, maybe it'll break up others, and it

> > won't hurt,

> > > so take it. For a year I've been taking it twice a day, along with

> > doing

> > > and taking other things, and I've not gotten any worse for a year,

> > and as

> > > far as I'm concerned, as a person dying of IPF, not getting worse

is

> > a win!

> > > As of January 1 now, my insurance dropped colchicene as a

formulary

> > drug.

> > > Colchicene may work, or maybe not. But I've not gotten any worse

> > and if

> > > there's a chance it's part of the reason, I want to keep taking

it.

> > So my

> > > doc argued it yesterday based on just that, and got it approved

for

> > me.

> > > Now here comes perfinidone. If it's approved, and if there's no

harm

> > in

> > > taking it, and there's a CHANCE it might do some good, bring it

on.

> > I really

> > > don't care about somebody's history with Wall Street. We educate

> > ourselves

> > > and are our own best advocates, and we talk with our doctors. If

> > there's a

> > > chance it might work, I should have the choice, and personally,

I'd

> > take

> > > the drug. If the whole thing I have to go by is " It can't hurt,

and

> > it

> > > might help " , then that's good enough for me.

> > >

> > > Bill C. IPF 10/08

> > >

> >

>

[Guest guest]

Bill,

My point exactly! We are fighting a fatal disease. Like cancer treatment, chemotherapy destroys the health of their bodies, but the possibility of this drug treating or maybe curing the cancer is why patients take the treatment.

I just can't sit here and worry about what might happen when I try a treatment... possible side effects or what the critics say or who's making money off the drug. I have to do what I can to fight my deadly disease that I know is going to kill me, it's a risk I'm willing to take.

Thank goodness we have people willing to participate in drug trials!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Wed, January 6, 2010 10:56:21 AMSubject: Perfinidone and this whole discussion

Getting the digest version of the postings, maybe I miss something now and then. But I don't understand why this discussion is even going on. Case in point. My first pulmonologist, over a year ago when I was diagnosed, prescribed Colchicene. It's basically a gout medicine but his feeling was if it breaks up some things, maybe it'll break up others, and it won't hurt, so take it. For a year I've been taking it twice a day, along with doing and taking other things, and I've not gotten any worse for a year, and as far as I'm concerned, as a person dying of IPF, not getting worse is a win! As of January 1 now, my insurance dropped colchicene as a formulary drug. Colchicene may work, or maybe not. But I've not gotten any worse and if there's a chance it's part of the reason, I want to keep taking it. So my doc argued it yesterday based on just that, and got it approved for

me. Now here comes perfinidone. If it's approved, and if there's no harm in taking it, and there's a CHANCE it might do some good, bring it on. I really don't care about somebody's history with Wall Street. We educate ourselves and are our own best advocates, and we talk with our doctors. If there's a chance it might work, I should have the choice, and personally, I'd take the drug. If the whole thing I have to go by is "It can't hurt, and it might help", then that's good enough for me.

Bill C. IPF 10/08