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 MB Thats great. Between hopeful and not wanting to get too much so, it's complicated. But there is nothing complicated about the simple fact you're better today than you were a month ago as it relates to the dermatomyositis. And that is cause for celebration. The 55 vs. 85 is nice, but I'm sure just feeling less itchy is nicer. > > 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 MB, JOY JOY.... anything that improves a little is cause to celebrate in my book. Wonderful drop in your sed. rate. I thought it was supposed to be around 30.. Mine was always around 83-85.. The muscle pain was horrible. I couldn't walk without crying.. I am praying this is the answer for you.14 days.. unless you come here for the night before. ;)just a thought.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 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! BethModeratorFibrotic 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 mary-beth thats great news. i love my imuran. i started feeling better in the first weeks of taking that. they started me on 25mg and increased it by 25mg each month until i reached 150. i was taking NAC at the time but it made a vast difference as to how i walked. of course i wasn't taking o2 at the time so i'm convinced that if you weren't taking o2 you would notice other benefits of the imuran as well dm. great news babe. may > > 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 Oh WOW fingers CROSSED Beth....wot is a 'sed' rate... if you've already told that just say & I'll look it up! 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 27, 2009 Report Share Posted February 27, 2009 Oh WOW fingers CROSSED Beth....wot is a 'sed' rate... if you've already told that just say & I'll look it up! 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 27, 2009 Report Share Posted February 27, 2009 , The 'sed rate' is a blood test that shows the rate at which red blood cells settle in test tube of whole blood in one hour. The rate is an indicator of inflammation. Normal for a woman is 0-20. Mine until recently was just under 100 but I seem to have had a big drop this week thanks to the Imuran. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, February 27, 2009 7:36:10 PMSubject: Re: Happy Day Oh WOW fingers CROSSED Beth....wot is a 'sed' rate... if you've already told that just say & I'll look it up! 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 27, 2009 Report Share Posted February 27, 2009 , The 'sed rate' is a blood test that shows the rate at which red blood cells settle in test tube of whole blood in one hour. The rate is an indicator of inflammation. Normal for a woman is 0-20. Mine until recently was just under 100 but I seem to have had a big drop this week thanks to the Imuran. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, February 27, 2009 7:36:10 PMSubject: Re: Happy Day Oh WOW fingers CROSSED Beth....wot is a 'sed' rate... if you've already told that just say & I'll look it up! 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 27, 2009 Report Share Posted February 27, 2009 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 27, 2009 Report Share Posted February 27, 2009 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 27, 2009 Report Share Posted February 27, 2009 GIO Many do not test enough for the potential autoimmune markers and indicators. The Centers of Excellence, and I'm sure many other centers specializing, do extensive blood work in that regard. Many rheumatologists even seem to test for Lupus and RA and not actively look for signs of other connective tissue diseases. It really takes a complete test battery sometimes to have any idea. Most of the markers can be out of range for many reasons. It's when they find a combination of factors. Even then they often have to correlate those to physical symptoms. I have at least eight or nine indicators that I could have an autoimmune disease, but nothing that convinces them I do. It's another good reason to have copies of everything so the history can be followed. > > > > > > 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 GIO Many do not test enough for the potential autoimmune markers and indicators. The Centers of Excellence, and I'm sure many other centers specializing, do extensive blood work in that regard. Many rheumatologists even seem to test for Lupus and RA and not actively look for signs of other connective tissue diseases. It really takes a complete test battery sometimes to have any idea. Most of the markers can be out of range for many reasons. It's when they find a combination of factors. Even then they often have to correlate those to physical symptoms. I have at least eight or nine indicators that I could have an autoimmune disease, but nothing that convinces them I do. It's another good reason to have copies of everything so the history can be followed. > > > > > > 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 , 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 To: Breathe-Support Sent: 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 27, 2009 Report Share Posted February 27, 2009 , 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 To: Breathe-Support Sent: 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 27, 2009 Report Share Posted February 27, 2009 /MB Now see...whereas MB's Sed rate jumped to near 100 and 's CK was some enormous number, mine all just do enough to tease. My ESR, CRP, CK, Sed Rate, Aldolase, ANA, Rheumatoid Factor, and Anticardiolipin M have all been out of range and that combined with history of GERD, atypical CT, swollen lymph nodes, and patulous esophagus made them think autoimmune. However, none of mine will spike really high and so all it really does is drives my rheumatologist crazy. I get them all repeated March 10. Interesting too that my worst lab scores in most cases were last April in Chicago. It's amazing how little they know about these areas of disease. I've also had multiple indicators that have led to follow up on different cancers and the follow ups all indicating I don't have them. My typical labs have anywhere from 5 to 10 items out of normal range. On many of these tests the rheumatologists talk and think in terms of multiples. For instance, if a normal sed rate is 0-15 (for a man my age) and one is at 30 (my most recent) then you're only over by a multiple of 1. Meanwhile MB was over by a multiple of 4. Most of mine have been only a multiple of 1 or 2 over. There is also no pattern of rising. So, I don't worry about what might be or that which they can't figure out. Meanwhile, my rheumatologist obsesses over it a bit and gets multiple additional doctors to provide opinions, none of which help him. > > > > > > 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 /MB Now see...whereas MB's Sed rate jumped to near 100 and 's CK was some enormous number, mine all just do enough to tease. My ESR, CRP, CK, Sed Rate, Aldolase, ANA, Rheumatoid Factor, and Anticardiolipin M have all been out of range and that combined with history of GERD, atypical CT, swollen lymph nodes, and patulous esophagus made them think autoimmune. However, none of mine will spike really high and so all it really does is drives my rheumatologist crazy. I get them all repeated March 10. Interesting too that my worst lab scores in most cases were last April in Chicago. It's amazing how little they know about these areas of disease. I've also had multiple indicators that have led to follow up on different cancers and the follow ups all indicating I don't have them. My typical labs have anywhere from 5 to 10 items out of normal range. On many of these tests the rheumatologists talk and think in terms of multiples. For instance, if a normal sed rate is 0-15 (for a man my age) and one is at 30 (my most recent) then you're only over by a multiple of 1. Meanwhile MB was over by a multiple of 4. Most of mine have been only a multiple of 1 or 2 over. There is also no pattern of rising. So, I don't worry about what might be or that which they can't figure out. Meanwhile, my rheumatologist obsesses over it a bit and gets multiple additional doctors to provide opinions, none of which help him. > > > > > > 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 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 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 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 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 when i was in the process of being diagnosed, the pulmonary at that time, ordered lots of blood tests for all sorts of stuff sorry i didn't make copies of the orders, then at least i would still know what was being tested i do think it included lots of the autoimmune diseases, and i do remember sed rate, which from my lab days, was used for lupus, among other things never knew that it was used for measuring inflammation Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Happy DayTo: Breathe-Support Date: Friday, February 27, 2009, 8:51 PM 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 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 Hey S... I have a lot of 'guys' in my life too. ;>) Your last line is funny! I haven't tried the Ben-guy much...he smells funny. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Happy Day Hi BruceDitto 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, TXNSIP 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> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Hey S... I have a lot of 'guys' in my life too. ;>) Your last line is funny! I haven't tried the Ben-guy much...he smells funny. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Happy Day Hi BruceDitto 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, TXNSIP 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> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.