Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Yesterday when I got up the first thing I noticed was that the discoloration and rash above my eyes seemed significantly less than it had been the day before. My hands also seemed less itchy. I didn't get my hopes up because I've had good days and bad days with this stuff before but.... I just checked my bloodwork results through the Duke portal and my sed rate is down from 98 last week to 55 this week. That's a huge drop and I would think a clear indication that the Imuran has begun to work to suppress my immune system and reduce the inflammation in my body! Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it's a whole lot better than 98! All the rest of my bloodwork good including my liver enzymes so I appear to be tolerating the Imuran so far. Not going crazy but I am cautiously optimistic! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 sounds good MB Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Happy DayTo: Breathe-Support Date: Friday, February 27, 2009, 8:19 AM Yesterday when I got up the first thing I noticed was that the discoloration and rash above my eyes seemed significantly less than it had been the day before. My hands also seemed less itchy. I didn't get my hopes up because I've had good days and bad days with this stuff before but.... I just checked my bloodwork results through the Duke portal and my sed rate is down from 98 last week to 55 this week. That's a huge drop and I would think a clear indication that the Imuran has begun to work to suppress my immune system and reduce the inflammation in my body! Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it's a whole lot better than 98! All the rest of my bloodwork good including my liver enzymes so I appear to be tolerating the Imuran so far. Not going crazy but I am cautiously optimistic! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Congrats, Beth! That is wonderful news. Hope the rapid progress continues. B > > Yesterday when I got up the first thing I noticed was that the discoloration and rash above my eyes seemed significantly less than it had been the day before. My hands also seemed less itchy. I didn't get my hopes up because I've had good days and bad days with this stuff before but.... > > I just checked my bloodwork results through the Duke portal and my sed rate is down from 98 last week to 55 this week. That's a huge drop and I would think a clear indication that the Imuran has begun to work to suppress my immune system and reduce the inflammation in my body! Yippeee!!! 55 is still crazy high (normal for a woman is 0- 15) but it's a whole lot better than 98! > > All the rest of my bloodwork good including my liver enzymes so I appear to be tolerating the Imuran so far. Not going crazy but I am cautiously optimistic! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Beth, Thats wonderful, its great to be able to see a significant value like that drop! Yesterday when I got up the first thing I noticed was that the discoloration and rash above my eyes seemed significantly less than it had been the day before. My hands also seemed less itchy. I didn't get my hopes up because I've had good days and bad days with this stuff before but.... I just checked my bloodwork results through the Duke portal and my sed rate is down from 98 last week to 55 this week. That's a huge drop and I would think a clear indication that the Imuran has begun to work to suppress my immune system and reduce the inflammation in my body! Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it's a whole lot better than 98! All the rest of my bloodwork good including my liver enzymes so I appear to be tolerating the Imuran so far. Not going crazy but I am cautiously optimistic! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Beth, Thats wonderful, its great to be able to see a significant value like that drop! Yesterday when I got up the first thing I noticed was that the discoloration and rash above my eyes seemed significantly less than it had been the day before. My hands also seemed less itchy. I didn't get my hopes up because I've had good days and bad days with this stuff before but.... I just checked my bloodwork results through the Duke portal and my sed rate is down from 98 last week to 55 this week. That's a huge drop and I would think a clear indication that the Imuran has begun to work to suppress my immune system and reduce the inflammation in my body! Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it's a whole lot better than 98! All the rest of my bloodwork good including my liver enzymes so I appear to be tolerating the Imuran so far. Not going crazy but I am cautiously optimistic! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 MB... like Bruce wrote, 'feeling less itchy is better'. Ohhh I've had the itchiness with allergies to opiates! Good news for you. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Happy Day MBThats great. Between hopeful and not wanting to get too much so, it'scomplicated. But there is nothing complicated about the simple factyou're better today than you were a month ago as it relates to thedermatomyositis. And that is cause for celebration. The 55 vs. 85 isnice, but I'm sure just feeling less itchy is nicer.>> Yesterday when I got up the first thing I noticed was that thediscoloration and rash above my eyes seemed significantly less than ithad been the day before. My hands also seemed less itchy. I didn't getmy hopes up because I've had good days and bad days with this stuffbefore but....>> I just checked my bloodwork results through the Duke portal and my sedrate is down from 98 last week to 55 this week. That's a huge drop and Iwould think a clear indication that the Imuran has begun to work tosuppress my immune system and reduce the inflammation in my body!Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it'sa whole lot better than 98!>> All the rest of my bloodwork good including my liver enzymes so Iappear to be tolerating the Imuran so far. Not going crazy but I amcautiously optimistic!>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 my c-reactive protein was high and i am being treated for the heart dx issue with it this was way before the ipf started wonder if it was really an early indicator of ipf -- hmmmm my daughter had ulcerative colitis, an auto immune dx, wonder if there is a connection genetically between that and ipf (and als) Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Happy DayTo: Breathe-Support Date: Friday, February 27, 2009, 9:18 PM , I've had them done off and on since I was diagnosed with NSIP. Mine's always been moderately elevated but was way way up this past fall when we started moving towards my DM diagnosis. Sed rates are elevated in most auto-immune diseases because they almost always cause inflammation but it's the combination of the sed rate along with many other factors that lead to a positive diagnosis. My C reactive protein is always crazy elevated. That one can be a sign of auto-immune issues or heart disease or cancer. You know there is a school of thought that IPF and/or UIP is actually auto-immune in nature....whether that will ultimately turn out to be the case is anyone's guess. It would be interesting to see a long term study done of many different PF patients, all types, for all these auto immune markers. These tests are incredibly expensive though. When they ran my Myositis panel Duke sent those tests out to the Mayo Clinic in Minnesota. These tests are so expensive to do that they are only done in a handful of places in the US. Still in all it would be interesting to see a study done. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: <gina.francis@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:51:56 PMSubject: Re: Happy Day That's most interesting MB... how often will you have those done? It makes me wonder if they regularly tested all of us with PF whether a pattern of consistently low levels would show for those with 'known' UIP & varying levels for those with 'other' Inflamatory- based PF processes. Since UIP is supposed to be a non-inflamatory predominantly Fibrotic process! Always THINKIN' I am....a disease process of it's owm my Mum reckoned!!!! ! Cheers, GIO > >> > Yesterday when I got up the first thing I noticed was that the discoloration and rash above my eyes seemed significantly less than it had been the day before. My hands also seemed less itchy. I didn't get my hopes up because I've had good days and bad days with this stuff before but....> > > > I just checked my bloodwork results through the Duke portal and my sed rate is down from 98 last week to 55 this week. That's a huge drop and I would think a clear indication that the Imuran has begun to work to suppress my immune system and reduce the inflammation in my body! Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it's a whole lot better than 98!> > > > All the rest of my bloodwork good including my liver enzymes so I appear to be tolerating the Imuran so far. Not going crazy but I am cautiously optimistic!> > > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Joyce, These are precisely the questions that interest me. When my CRP first came back elevated they did lots of heart related tests and they've found my heart is in good shape. And in fact my heart seems to have recovered from the congestive heart failure I suffered from when my PF was diagnosed. Since then they've concluded that the elevated CRP for me has to do with an auto-immune issue and ultimately that proved to be the case since I've been diagnosed with the DM. The whole auto immune field is still very young and they are learning new things all the time. It wouldn't surprise me if they found connections and causal relationships between conditions and diseases that we don't expect now. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, February 28, 2009 9:11:01 AMSubject: Re: Re: Happy Day my c-reactive protein was high and i am being treated for the heart dx issue with it this was way before the ipf started wonder if it was really an early indicator of ipf -- hmmmm my daughter had ulcerative colitis, an auto immune dx, wonder if there is a connection genetically between that and ipf (and als) Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Happy DayTo: Breathe-Support@ yahoogroups. comDate: Friday, February 27, 2009, 9:18 PM , I've had them done off and on since I was diagnosed with NSIP. Mine's always been moderately elevated but was way way up this past fall when we started moving towards my DM diagnosis. Sed rates are elevated in most auto-immune diseases because they almost always cause inflammation but it's the combination of the sed rate along with many other factors that lead to a positive diagnosis. My C reactive protein is always crazy elevated. That one can be a sign of auto-immune issues or heart disease or cancer. You know there is a school of thought that IPF and/or UIP is actually auto-immune in nature....whether that will ultimately turn out to be the case is anyone's guess. It would be interesting to see a long term study done of many different PF patients, all types, for all these auto immune markers. These tests are incredibly expensive though. When they ran my Myositis panel Duke sent those tests out to the Mayo Clinic in Minnesota. These tests are so expensive to do that they are only done in a handful of places in the US. Still in all it would be interesting to see a study done. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: <gina.francis@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:51:56 PMSubject: Re: Happy Day That's most interesting MB... how often will you have those done? It makes me wonder if they regularly tested all of us with PF whether a pattern of consistently low levels would show for those with 'known' UIP & varying levels for those with 'other' Inflamatory- based PF processes. Since UIP is supposed to be a non-inflamatory predominantly Fibrotic process! Always THINKIN' I am....a disease process of it's owm my Mum reckoned!!!! ! Cheers, GIO > >> > Yesterday when I got up the first thing I noticed was that the discoloration and rash above my eyes seemed significantly less than it had been the day before. My hands also seemed less itchy. I didn't get my hopes up because I've had good days and bad days with this stuff before but....> > > > I just checked my bloodwork results through the Duke portal and my sed rate is down from 98 last week to 55 this week. That's a huge drop and I would think a clear indication that the Imuran has begun to work to suppress my immune system and reduce the inflammation in my body! Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it's a whole lot better than 98!> > > > All the rest of my bloodwork good including my liver enzymes so I appear to be tolerating the Imuran so far. Not going crazy but I am cautiously optimistic!> > > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 What no pool guy, lol Hi Bruce Ditto to all those numbers a little +/- where they should be. Fortunately my rheumatologist said " Look, I've been doing this 28 years and I don't care what the numbers say. I am sure you have RA so I'm going to treat you for it. " He gave me Plaquenil and told me I HAVE to see my eye dr every 6 months religiously. And the Plaquenil helps. So the numbers came back out of kilter, slightly, again, but he said " Well even if the numbers don't indicate RA I still think it is. But the drug treats lupus too. " SO even when they think they know based on experience, they still don't know. I told him I didn't care what he calls it as long as he lets me take the Plaquenil because it helps. The eye dr thing is because sometimes the drug can cause retina damage. OK if it is not one thing it's another. The eye dr says not to stress. And there is still Ben-Gay. So now we have the pulmo guy, cardio guy, gastro guy, regular MD guy, eye guy, rheumo guy and Ben-guy. LOL S, Lubbock, TX NSIP w/PF 12/2006 et al > > > > > > > > Yesterday when I got up the first thing I noticed was that the > discoloration and rash above my eyes seemed significantly less than it > had been the day before. My hands also seemed less itchy. I didn't get > my hopes up because I've had good days and bad days with this stuff > before but.... > > > > > > > > I just checked my bloodwork results through the Duke portal and my > sed rate is down from 98 last week to 55 this week. That's a huge drop > and I would think a clear indication that the Imuran has begun to work > to suppress my immune system and reduce the inflammation in my body! > Yippeee!!! 55 is still crazy high (normal for a woman is 0-15) but it's > a whole lot better than 98! > > > > > > > > All the rest of my bloodwork good including my liver enzymes so I > appear to be tolerating the Imuran so far. Not going crazy but I am > cautiously optimistic! > > > > > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
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