Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Thanks, Zena. If I do proceed with this once I have the facts, I will let you know the outcome. Diane IPF June 07New Brunswick, Canada Re: steroid pulse I haven't had any experience of it, but my docs have been bandying about this option for me. I don't know if it's going to work or not though. I shall watch out for any answers with interest Love Ze xx>> Does anyone know anything about a "steroid pulse". That is my doctor's next step to try and slow down the progression of the PF. Apparently I will go to the hospital for 5 days and be bombarded with steroids intravenously. Has anyone had any experience with this? I guess the important question would be "did it have any positive effect"?> Diane > IPF June 07> New Brunswick, Canada> > > ____________ _________ _________ _________ _________ _________ _________> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers and share what you know at http://ca.answers. yahoo.com> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Thanks, Bruce. I have not discussed the details with my pulmo yet. He is sending explicit instructions to my GP so I can have the treayment right here in my home town. Once he has this, we will discuss all the pertinent info. At this point, I am ready to try most anything. Diane IPF June 07New Brunswick, Canada Re: steroid pulse DianeI've read a lot about efforts where its been tried for various things,although not PF. I don't know what amount they are planning for you butI read of dosages of anywhere from 500 to 1200 mg per day beingadministered in some life and death type situations, such as graftrejection. I suspect they're actually going to administer it for 3 daysor so of the 5? Certainly your doctor should fill you in on the practiceand how widely its been tried as well as the risks. The theory appearsto believe you can hit strong and hard and have more impact while at thesame time not having the side effects of oral steroids. However, justlike oral prednisone there aren't many completed trials. I would justask the doctors for as much information as possible to make an informedchoice. You might also ask the same questions of the doctors that youasked here-how many patients and what effects? I will be surprised tohear anyone here has tried it.>> Does anyone know anything about a "steroid pulse". That is mydoctor's next step to try and slow down the progression of the PF. Apparently I will go to the hospital for 5 days and be bombarded withsteroids intravenously. Has anyone had any experience with this? Iguess the important question would be "did it have any positive effect"?> Diane > IPF June 07> New Brunswick, Canada>>> ____________ _________ _________ _________ _________ _________ _> Ask a question on any topic and get answers from real people. Go toYahoo! Answers and share what you know at http://ca.answers. yahoo.com> Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Zena, I only had it once for 5 days when I was first hospitalized. It was done before I had any real understanding of what was wrong with me. My sister the physician nearly had a stroke when she found out what they were doing. (apparently it's not commonly done in this country) But it seemed to work. I remember vaguely being told they might need to hospitalize me again for "another pulse" if the oral steroids didn't do what they hoped. That didn't happen but they did increase the oral steroids up to 100mg for a little while that summer. But by October they had started weaning me off the oral pred and I've not had any iv steroids since that first hospitalization. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive steroid pulse> > > Does anyone know anything about a "steroid pulse". That is my doctor's next step to try and slow down the progression of the PF. Apparently I will go to the hospital for 5 days and be bombarded with steroids intravenously. Has anyone had any experience with this? I guess the important question would be "did it have any positive effect"?> Diane > IPF June 07> New Brunswick, Canada > > > ____________ _________ _________ __> > Yahoo! Canada Toolbar :Search from anywhere on the web and bookmark your favourite sites. Download it now!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Bruce, In the hospital the only side effect I had was my blood sugar destablized pretty much immediately. I was on insulin by the third day. Other than that I was fine. I was on 750mg a day for 5 days then 100mg still through the iv till I went home. Had to go back and check. Am surprized it was that much. I hadn't realized it was that high. From there I went on oral pred 60mg initially then was pushed up to 80 and then 100 before they began weaning me in October of 06. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive steroid pulse>>> Does anyone know anything about a "steroid pulse". That is mydoctor's next step to try and slow down the progression of the PF. Apparently I will go to the hospital for 5 days and be bombarded withsteroids intravenously. Has anyone had any experience with this? Iguess the important question would be "did it have any positive effect"?> Diane > IPF June 07> New Brunswick, Canada>>> ____________ _________ _________ __>> Yahoo! Canada Toolbar :Search from anywhere on the web and bookmarkyour favourite sites. Download it now!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Bruce, Since I had ongoing treatment with oral pred I don't know about the weaning. In general they say weaning is unnecessary for such a short duration of treament but the tremendous doses do make you wonder, don't they? Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive steroid pulse> >> >> > Does anyone know anything about a "steroid pulse". That is my> doctor's next step to try and slow down the progression of the PF.> Apparently I will go to the hospital for 5 days and be bombarded with> steroids intravenously. Has anyone had any experience with this? I> guess the important question would be "did it have any positiveeffect"?> > Diane > > IPF June 07> > New Brunswick, Canada> >> >> > ____________ _________ _________ __> >> > Yahoo! Canada Toolbar :Search from anywhere on the web and bookmark> your favourite sites. Download it now!> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 My pulmo did say that one reason for being in the hospital was because of my diabetes. He also said that I would be very weak for the duration. I will be anxious to ask more questions when the time is right. You never know what Bruce may dig up as well. It is encouraging to know that it was effective for you, Beth. The oral prednisone was fantastic for me for all of 3-4 weeks and then all the positive effects disappeared and I continue to decline. I hope you had a perfectly wonderful day today (and every other day as well). Diane IPF June 07New Brunswick, Canada steroid pulse>>> Does anyone know anything about a "steroid pulse". That is mydoctor's next step to try and slow down the progression of the PF. Apparently I will go to the hospital for 5 days and be bombarded withsteroids intravenously. Has anyone had any experience with this? Iguess the important question would be "did it have any positive effect"?> Diane > IPF June 07> New Brunswick, Canada>>> ____________ _________ _________ __>> Yahoo! Canada Toolbar :Search from anywhere on the web and bookmarkyour favourite sites. Download it now!> Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Bruce: Here is an article that does talk about using pulse therapy for PF. http://sciencelinks.jp/j-east/article/200516/000020051605A0540536.php Diane IPF June 07New Brunswick, Canada steroid pulse> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, July 15, 2008, 1:17 PM> > > > > > > > > > > > > Does anyone know anything about a "steroid pulse". That is my doctor's next step to try and slow down the progression of the PF. Apparently I will go to the hospital for 5 days and be bombarded with steroids intravenously. Has anyone had any experience with this? I guess the important question would be "did it have any positive effect"?> Diane > IPF June 07> New Brunswick, Canada> > > > > > > > > > > > > > > > > Yahoo! > Canada Toolbar : Search from anywhere on > the web and bookmark your favourite sites. Download it now!> Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Unfortunately, most of what I read wasn't that positive but it does have some sucesses. I will certainly keep you advised of any outcomes. Diane IPF June 07New Brunswick, Canada steroid pulse> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, July 15, 2008, 1:17 PM> >> >> >> >> >> >> >> >> >> >> >> >> > Does anyone know anything about a "steroid pulse". That is my> doctor's next step to try and slow down the progression of the PF.> Apparently I will go to the hospital for 5 days and be bombarded with> steroids intravenously. Has anyone had any experience with this? I> guess the important question would be "did it have any positive> effect"?> > Diane > > IPF June 07> > New Brunswick, Canada> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> > Yahoo!> > Canada Toolbar : Search from anywhere on> > the web and bookmark your favourite sites. Download it now!> >>>>>> ____________ _________ _________ _________ _________ _________ _> Looking for the perfect gift? Give the gift of Flickr!>> http://www.flickr. com/gift/> Reclaim your name @ymail.com or @rocketmail.com. Get your new email address now! Quote Link to comment Share on other sites More sharing options...
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