Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Diane I'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 but I read of dosages of anywhere from 500 to 1200 mg per day being administered in some life and death type situations, such as graft rejection. I suspect they're actually going to administer it for 3 days or so of the 5? Certainly your doctor should fill you in on the practice and how widely its been tried as well as the risks. The theory appears to believe you can hit strong and hard and have more impact while at the same time not having the side effects of oral steroids. However, just like oral prednisone there aren't many completed trials. I would just ask the doctors for as much information as possible to make an informed choice. You might also ask the same questions of the doctors that you asked here-how many patients and what effects? I will be surprised to hear anyone here has tried it. > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Zena/Diane Much of the uses of it I found were in the UK and Canada. So, it makes sense that the two of you are the two to have had it mentioned. > > > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Diane, It's funny, I haven't heard that term for about two years but it was used for me when I was first diagnosed with fibrosis. I was treated with a "steroid pulse" on the occasion of my very first hospitalization. I was on high doses of iv solumedrol for a limited period of time and then oral prednisone upon my discharge. As I've written before it is my belief (and my doctors at the time agreed) that the iv steroids saved my life. My fibrosis at the time was out of control and I was also in congestive heart failure. The steroids seemed to bring things under control within about 4-5 days. I think this is one of those things where it's going to work for some and not for others. Tough decision to have to make. 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 07New 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 I do know someone who has had this treatment, but it was for a different disease, polymyositis, She would go in on the monday evening. Would be hooked up on tuesday morning. I think the drips were 8 hours long, so she wasn't hooked up over night, then home on the friday. She's stopped now though as her doc has decided that it isn't for her. She doesn't think it's doing much, it certainly isn't taking her pain away, but as I said she's not getting it for PF. I'll have a word with her and see what she says. 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> >> > > > > __________________________________________________________________> Instant Messaging, free SMS, sharing photos and more... Try the new Yahoo! Canada Messenger at http://ca.beta.messenger.yahoo.com/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Hi Beth, How often did you have the treatment? As I said in another post, my friend had this treatment for a different disease, she went in for a week about every 4-5 weeks. This is the possible problem with this treatment for me, the amount of time I'd be expected to be in hospital. Love Ze xx>> Diane,> It's funny, I haven't heard that term for about two years but it was used for me when I was first diagnosed with fibrosis. I was treated with a "steroid pulse" on the occasion of my very first hospitalization. I was on high doses of iv solumedrol for a limited period of time and then oral prednisone upon my discharge. > As I've written before it is my belief (and my doctors at the time agreed) that the iv steroids saved my life. My fibrosis at the time was out of control and I was also in congestive heart failure. The steroids seemed to bring things under control within about 4-5 days. > I think this is one of those things where it's going to work for some and not for others. Tough decision to have to make.> > 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 Beth Did you have any side effects from the steroid pulse? Logic seems to tell me that there's more risk of a critical, even life threatening side effect, but actually less total risk of side effects than a long run of oral steroids. Something I definitely want to find out more about as I might be more inclined at some point to consider this than I am for ongoing oral prednisone. > > Diane, > It's funny, I haven't heard that term for about two years but it was used for me when I was first diagnosed with fibrosis. I was treated with a " steroid pulse " on the occasion of my very first hospitalization. I was on high doses of iv solumedrol for a limited period of time and then oral prednisone upon my discharge. > As I've written before it is my belief (and my doctors at the time agreed) that the iv steroids saved my life. My fibrosis at the time was out of control and I was also in congestive heart failure. The steroids seemed to bring things under control within about 4-5 days. > I think this is one of those things where it's going to work for some and not for others. Tough decision to have to make. > > 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 Steriod Pulse for PAH associated with rheumatic diseases, in particular connective tissue diseases such as systemic sclerosis, Long read but some what interestinghttp://rheumatology.oxfordjournals.org/cgi/content/full/45/suppl_4/iv22 P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: steroid pulseTo: Breathe-Support 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 07New 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 Thanks for the link. Seems to be much more used in Europe as many of the sitings I found were UK. Then the mention Zena made of use with Polymyositis was of particular interest to me. I think as I read about it, why wouldn't it be an option in any situation in which oral prednisone is often prescribed? > > Subject: steroid pulse > To: Breathe-Support > 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! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Beth Now I'm wondering from some of what I'm reading if you only did it for the pulse part-3 to 5 days-if the weaning comes into play. The quantities would make you think so, although the short time would make you think maybe not. Certainly gives me some questions to find out if any of my doctors have ever even had any experience with it. > > > > Diane, > > It's funny, I haven't heard that term for about two years but it was > used for me when I was first diagnosed with fibrosis. I was treated with > a " steroid pulse " on the occasion of my very first hospitalization. I > was on high doses of iv solumedrol for a limited period of time and then > oral prednisone upon my discharge. > > As I've written before it is my belief (and my doctors at the time > agreed) that the iv steroids saved my life. My fibrosis at the time was > out of control and I was also in congestive heart failure. The steroids > seemed to bring things under control within about 4-5 days. > > I think this is one of those things where it's going to work for some > and not for others. Tough decision to have to make. > > > > 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 Thanks, . I also found this study that was done in India but, again, not for PF. http://dermatology.cdlib.org/95/original/pemphigus/sacchidanand.html Diane IPF June 07New Brunswick, Canada steroid pulseTo: Breathe-Support@ yahoogroups. comDate: 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 07New Brunswick, Canada Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! 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 Diane Amazing what we're digging up. I've seen it combined with tonsillectomies, given before and after grafts, plus the PAH and now the PF and many other uses. Yet, outside of you, Beth, and Zena haven't heard of it even being discussed with patients as an alternative. Again, wish doctors would give all the choices and advise and then let us decide. I hope it turns out to be something promising for you and glad to have learned a lot today. > > From: Diane dtpaul00@ .> > > Subject: 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/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Diane Well, hopefully your doctor and those around him have experience and can give you their actual experiences which are much more applicable than other places on other diseases. Most of what I read was life or death (immediate threat in some cases) and in that circumstance hard to know what the results are. Seems some success but then some deaths either regardless of it or even attributed to it. Still don't know the circumstances nor the dosages nor the patients conditions or anything else. So, comes down to your doctor or he and his colleagues and how many times he's been involved with it for PF and what the results have been or any other directly relevant information he can contribute. So far only one I know is Beth and she's doing quite well. > > > From: Diane dtpaul00@ .> > > > Subject: 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/ > > > > > > > __________________________________________________________________ > Instant Messaging, free SMS, sharing photos and more... Try the new Yahoo! Canada Messenger at http://ca.beta.messenger.yahoo.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 In response to your last comment Bruce, maybe because it is highly inconvenient. My friend had it every 4-6 weeks. This would not be easy to accomodate with a 5 year old at home. I don't know if they would do it in my local hospital or the one that suggested it, which is the other side of london. I'll have to work out getting there and home, for me going by public transport is out of the question because of the amount of O2 I'd need to carry, and then I'd have to sort out child care for the week. If child care isn't available then Rob will have to take more time off of work to sort it out. It would be do-able, just highly inconvenient. Where as if I just pop a pill, I don't have all that to worry about. Then from the nhs's point of view, there's the taking up of a bed for a week which costs money too, so they'll try not to if they can help it. Love Ze xx> > From: Diane dtpaul00@> > Subject: steroid pulse> > To: Breathe-Support > > 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!> >> Quote Link to comment Share on other sites More sharing options...
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