Re: Has anyone heard of any study groups using warfarin as a treatment for PF?

[Guest guest]

Weird, Warfarin almost sounds worse than the disease, unless it is made in this weird number so you do not know what it is: IL13-PE38QQR it works by spraying it in your lungs... Warfarin is basically poison that kills rats and yes it is blood thinner, I have enough problems with Plavix, a less evil blood thinner Erna

1992 bird fanciers syndrome, CAD & MI 2004, ILD 2008 NSIP 2009

Washington State

Subject: Has anyone heard of any study groups using warfarin as a treatment for PF?To: Breathe-Support Date: Friday, January 15, 2010, 12:04 AM

I went to my local IPF group meeting Thursday, Jan 14. They had representatives from the University of Utah that presented the status of study groups they are just ending with and new ones to watch for in the upcoming months. They have two that I am looking into. One is a combined prednisone and NAC study (there have been a couple out there) and one I have never heard of and that is involving warfarin (that is a blood thinner, right!!). I just thought I would ask and see if anyone had ever heard of such a thing. I am curious as to what could possibly lead the study people into thinking that is a viable possibility for treating PF. But then, there does not seem to be a whole heck of a lot of options out there so...Your thoughts please.Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

[Guest guest]

Hi Erna,

I'm interested in your comments, particularly about your experience with Plavix. How long have you been taking that drug? Did you have problems straight away or some time after commencement?

In December I was confirmed as having a Hole in my Heart & immediately put on Plavix to guard against the high risk of stroke. I'll be having the Hole closed sometime in the next few months but will have to stay on Plavix for about 6 months beyond the surgery.

I know that Plavix causes changes to Blood Platlets becoming sticky & therefore we must be careful not to cause ourselves injury. I've already noticed that I'm bruising very easily. It'll be interesting to see what happens when I go along for my now due, routine dental cleaning session as my gums bleed very easily anyway....

Ho Hum...ain't life just a great round of surprises..this Hole in the Heart thingy was discovered when they were checking me out for EAR/Neuro problems! Once they started a whole new line of questions about symptoms..it was stuff I'd noticed on & off, but never mentioned to any Medico, since 1972! I just thought the vision weird stuff was caused by me looking out into the sunlight from a shady room! HA!

Cheers,

in Oz

IPF: Fibrotic NSIP/UIP

Raynaud's

May 2007

> > > Subject: Has anyone heard of any study groups using warfarin as a treatment for PF?> To: Breathe-Support > Date: Friday, January 15, 2010, 12:04 AM> > > Â > > > > I went to my local IPF group meeting Thursday, Jan 14. They had representatives from the University of Utah that presented the status of study groups they are just ending with and new ones to watch for in the upcoming months. They have two that I am looking into. One is a combined prednisone and NAC study (there have been a couple out there) and one I have never heard of and that is involving warfarin (that is a blood thinner, right!!). I just thought I would ask and see if anyone had ever heard of such a thing. I am curious as to what could possibly lead the study people into thinking that is a viable possibility for treating PF. But then, there does not seem to be a whole heck of a lot of options out there so...> > Your thoughts please.> > Stefani 61 year old Utahn> ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>

[Guest guest]

Stefani

Well, let's start with some other items and that is that that we've

found certain meds that do more than we thought to benefit other body

areas than those prescribed for. Two examples then that have been in

tests are Tracleer and Revatio to see what they do for exercise with IPF

and maybe even IPF. We already know they treat PH. So, now you look at

Warfarin. We already know that blood clots are sometimes a problem with

IPF'ers and so many have found themselves on Warfarin for that. Now a

few doctors might see those patients doing pretty well and then wonder

if its coincidence or some correlation. So, we have some Phase I and II

experimentation and that leads now to a Phase III trial to involve 256

participants.

This is being conducted at a large number of schools including the IPF

centers of excellence.

>

> I went to my local IPF group meeting Thursday, Jan 14. They had

representatives from the University of Utah that presented the status of

study groups they are just ending with and new ones to watch for in the

upcoming months. They have two that I am looking into. One is a

combined prednisone and NAC study (there have been a couple out there)

and one I have never heard of and that is involving warfarin (that is a

blood thinner, right!!). I just thought I would ask and see if anyone

had ever heard of such a thing. I am curious as to what could possibly

lead the study people into thinking that is a viable possibility for

treating PF. But then, there does not seem to be a whole heck of a lot

of options out there so...

>

> Your thoughts please.

>

> Stefani 61 year old Utahn

> ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

>

[Guest guest]

Hi again Erna,

I THINK you may have missed this Post from me asking you about your experience with Plavix.....I'd be really interested in your feedback. Ta!

in Oz> >> >> > From: Stefani sfshaner@> > Subject: Has anyone heard of any study groups using> warfarin as a treatment for PF?> > To: Breathe-Support > > Date: Friday, January 15, 2010, 12:04 AM> >> >> > Â> >> >> >> > I went to my local IPF group meeting Thursday, Jan 14. They had> representatives from the University of Utah that presented the status of> study groups they are just ending with and new ones to watch for in the> upcoming months. They have two that I am looking into. One is a combined> prednisone and NAC study (there have been a couple out there) and one I> have never heard of and that is involving warfarin (that is a blood> thinner, right!!). I just thought I would ask and see if anyone had ever> heard of such a thing. I am curious as to what could possibly lead the> study people into thinking that is a viable possibility for treating PF.> But then, there does not seem to be a whole heck of a lot of options out> there so...> >> > Your thoughts please.> >> > Stefani 61 year old Utahn> > ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea> 4/2009> >>

[Guest guest]

Yes, I missed your post. I have been on Plavix for almost 5 years now.. First I was on it after an heart attack for around a year. Now I have some strange stenting, it is like a funnel sort of in three veins I guess. Many cardiologist and surgeons are unhappy about this and should have headed a bypass. This would have lasted longer and would not have had to be on Plavix for the rest of my life.

Personally I have not much trouble with the Plavix besides bruising easily… My partner sometimes feels more upset about it because it looks sometimes like I might have beat me.(laughing). They also thought in the beginning when I had lung problems that I had bleeding going on but this was put to rest by a bronchoscopy.

I do make sure I eat before I take the plavix, and I also take DGL and papaya enzymes so my stomach is coated and in good shape, this is good for anyone with stomach problems.…. Many people have stomach problems with plavix…My cardiologist is fine with this and does believe it is better the Proton-pump inhibitor which interact with Plavix. For me mostly bleeding when

I cut my self by accident in the garden per example is the worst.. Which I do not think I can do now anymore much with my DX of NSIP, which still is not totally verified, as some doctors believe it is worse…. I will not know until I meet Doctor Ragu.

However the reason that I did not get diagnosed earlier is that my cardiologist would not take me of the Plavix for a lung biopsy and needed to go to a bigger Hospital to get this done…..

If you take plavix just make sure you take very well care of your stomach…. Bruises are not that big of a deal. Also make sure if you cut yourself by accident that you have something to stop the bleeding. Like ice. Pressure bandage…. And so on…. I hope this helps, Erna

1992 bird fanciers syndrome, CAD & MI 2004, ILD 2008 NSIP 2009

Washington State

Subject: Re: Has anyone heard of any study groups using warfarin as a treatment for PF?To: Breathe-Support Date: Sunday, January 17, 2010, 6:02 PM

Hi again Erna,

I THINK you may have missed this Post from me asking you about your experience with Plavix.....I' d be really interested in your feedback. Ta!

in Oz> >> >> > From: Stefani sfshaner@> > Subject: Has anyone heard of any study groups using> warfarin as a treatment for PF?> > To: Breathe-Support@ yahoogroups. com>

> Date: Friday, January 15, 2010, 12:04 AM> >> >> > Â> >> >> >> > I went to my local IPF group meeting Thursday, Jan 14. They had> representatives from the University of Utah that presented the status of> study groups they are just ending with and new ones to watch for in the> upcoming months. They have two that I am looking into. One is a combined> prednisone and NAC study (there have been a couple out there) and one I> have never heard of and that is involving warfarin (that is a blood> thinner, right!!). I just thought I would ask and see if anyone had ever> heard of such a thing. I am curious as to what could possibly lead the> study people into thinking that is a viable possibility for treating PF.> But then, there does not seem to be a whole heck of a lot of options out> there so...> >>

> Your thoughts please.> >> > Stefani 61 year old Utahn> > ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea> 4/2009> >>

[Guest guest]



Erna,

Did they finally do the biopsy while you were on Plavix? They are postponing my biopsy until summer. I started Plavix in September for a cardiac artery stent.

Thanks, Donna

Has anyone heard of any study groups using> warfarin as a treatment for PF?> > To: Breathe-Support@ yahoogroups. com> > Date: Friday, January 15, 2010, 12:04 AM> >> >> > Â> >> >> >> > I went to my local IPF group meeting Thursday, Jan 14. They had> representatives from the University of Utah that presented the status of> study groups they are just ending with and new ones to watch for in the> upcoming months. They have two that I am looking into. One is a combined> prednisone and NAC study (there have been a couple out there) and one I> have never heard of and that is involving warfarin (that is a blood> thinner, right!!). I just thought I would ask and see if anyone had ever> heard of such a thing. I am curious as to what could possibly lead the> study people into thinking that is a viable possibility for treating PF.> But then, there does not seem to be a whole heck of a lot of options out> there so...> >> > Your thoughts please.> >> > Stefani 61 year old Utahn> > ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea> 4/2009> >>

[Guest guest]

Hi, Donna

No, they could not do my biopsy on Plavix and my cardiologist did not think my lung problem was a big deal. My pulmonologist was completely frustrated and said if the fibrosis that he saw on the CT scan would get worse; the changes of having bigger problems with the biopsy would be higher. The ground glass or whatever they call it in the CT scan became larger and larger very fast and he would show it to me.

So, I decided to take my chances of Plavix for 7 days and have the biopsy done in Seattle with another cardiologist and also another pulmonologist who did not see this as such a big problem to take me off Plavix for 7 days. They let me take a full aspirin every day.

I had at one time knee surgery and also was off plavix after a half a year of the three stents in planted that saved my life and had no problem with being of the Plavix.... I really felt I had to do the biopsy as the Doctors up here would think my breathlessness was all in my head... and was making it all up. You could not believe the weird treatment I received in the emergency room when I was hypoxic and also had syncope’s at times not related to the IPF but from Supraventricular tachycardia (SVT). They would run street drug tests on me. Once when I

passed out and the nurse came in pulled off my oxygen. Me being scared not knowing where I was hanged on to my oxygen…. They thought I attacked the nurse, I have proof I did not and they sent in the police into the emergency room. My partner, who was with me, had to talk to police and fill out a police report…They actually tried to charge me with assault…

The biopsy needed to be done for my sanity and not letting getting the disease worse, which at the time I had no clue what it was…

I believe you need to look at your situation and maybe get a second opinion on your situation, If the fibrosis is getting to bad and you oxygen sats keep going down the changes of having bigger problems with the biopsy is higher, as it was I have not been able to get of oxygen since my Vats biopsy…. I hope my experience is somewhat of a help for you, Erna

1992 bird fanciers syndrome,CAD & MI 2004, ILD 2008 NSIP 2009

Washington State

From: grangi49 <killara49 (AT) gmail (DOT) com>Subject: Re: Has anyone heard of any study groups using warfarin as a treatment for PF?To: Breathe-Support@ yahoogroups. comDate: Sunday, January 17, 2010, 6:02 PM

Hi again Erna,

I THINK you may have missed this Post from me asking you about your experience with Plavix.....I' d be really interested in your feedback. Ta!

in Oz> >> >> > From: Stefani sfshaner@> > Subject: Has anyone heard of any study groups using> warfarin as a treatment for PF?> > To: Breathe-Support@ yahoogroups. com>

> Date: Friday, January 15, 2010, 12:04 AM> >> >> > Â> >> >> >> > I went to my local IPF group meeting Thursday, Jan 14. They had> representatives from the University of Utah that presented the status of> study groups they are just ending with and new ones to watch for in the> upcoming months. They have two that I am looking into. One is a combined> prednisone and NAC study (there have been a couple out there) and one I> have never heard of and that is involving warfarin (that is a blood> thinner, right!!). I just thought I would ask and see if anyone had ever> heard of such a thing. I am curious as to what could possibly lead the> study people into thinking that is a viable possibility for treating PF.> But then, there does not seem to be a whole heck of a lot of options out> there so...> >>

> Your thoughts please.> >> > Stefani 61 year old Utahn> > ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea> 4/2009> >>

[Guest guest]



Thanks Erna, very helpful. I have more tests in a couple of weeks. If lung issues worsen I will push for biopsy. I appreciate the info.

Donna

Has anyone heard of any study groups using> warfarin as a treatment for PF?> > To: Breathe-Support@ yahoogroups. com> > Date: Friday, January 15, 2010, 12:04 AM> >> >> > Â> >> >> >> > I went to my local IPF group meeting Thursday, Jan 14. They had> representatives from the University of Utah that presented the status of> study groups they are just ending with and new ones to watch for in the> upcoming months. They have two that I am looking into. One is a combined> prednisone and NAC study (there have been a couple out there) and one I> have never heard of and that is involving warfarin (that is a blood> thinner, right!!). I just thought I would ask and see if anyone had ever> heard of such a thing. I am curious as to what could possibly lead the> study people into thinking that is a viable possibility for treating PF.> But then, there does not seem to be a whole heck of a lot of options out> there so...> >> > Your thoughts please.> >> > Stefani 61 year old Utahn> > ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea> 4/2009> >>

[Guest guest]

Thanks Erna you have been very helpful..I've been taking the Plavix BEFORE my brekkie in the morning...I'll swap to after now. I am liable to cop gastritis from various medications.

I'll be stuck on Plavix for 6 months after the surgery...hopefully then I'll be able to stop. Not sure when the surgery will be ..I see the Surgeon in 2 weeks time in Brisbane...3 hours drive away..the nearest Heart Specialist City for me.

Thanks again!

in Oz

IPF:Fibrotic NSIP/ UIP

Raynauds

May 2007

> > >> > >> > > From: Stefani sfshaner@> > > Subject: Has anyone heard of any study groups using> > warfarin as a treatment for PF?> > > To: Breathe-Support@ yahoogroups. com> > > Date: Friday, January 15, 2010, 12:04 AM> > >> > >> > > Â> > >> > >> > >> > > I went to my local IPF group meeting Thursday, Jan 14. They had> > representatives from the University of Utah that presented the status of> > study groups they are just ending with and new ones to watch for in the> > upcoming months. They have two that I am looking into. One is a combined> > prednisone and NAC study (there have been a couple out there) and one I> > have never heard of and that is involving warfarin (that is a blood> > thinner, right!!). I just thought I would ask and see if anyone had ever> > heard of such a thing. I am curious as to what could possibly lead the> > study people into thinking that is a viable possibility for treating PF.> > But then, there does not seem to be a whole heck of a lot of options out> > there so...> > >> > > Your thoughts please.> > >> > > Stefani 61 year old Utahn> > > ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea> > 4/2009> > >> >>