Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Hi Beth, I Hope the rash has settled down. Irene > Sher, > I have what Dr on at Duke has called a " mechanics hand " rash. It's a symptom of a collegen vascular disease though we have yet to pinpoint which one I have. He has said that when it " flares " next we will probably biopsy it and that will give us more information. > In the meantime, it comes and goes but it's more of an annoyance than anything else at the present time. I get peeling, callousing and itching that drives me mad. More on my right hand than my left but it's on both. As I'm looking at my hands right now, my left hand is pretty clear, my right has some peeling on my palm, and all of my fingers, there are callouses in between my fingers on the sides. It is mildly itchy as I'm sitting here. > I first noticed this rash in November of 2004. I had the rash before I had any significant symptoms of my lung disease but I never connected it until I saw Dr. on at Duke. It vanished the entire time I was on prednisone and stayed gone for 6 months after I was off it. It only returned late last year. I might not have even mentioned it to Dr. on except that he was so incredibly thorough in his examination and his questioning. I'm glad I did because it may eventually lead to an answer of how I ended up with this blasted lung disease. > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > I'm Back! > > Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe > a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant! > Toodles! > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 MB...what you describe here sound very unpleasant to deal with. I don't have what you (or Jane) describe. You two sound similar. I just "itch", my forearms mostly and frequently my head! No head lice for sure! I get these white spots on my skin, arms and legs and they itch. Dr. says she thinks it is sun related but I do not have Lupus. Weird and annoying but not as bad as your condition. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! I'm Back! Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Hi Sher, wow...I get those white spots on the skin too on my left arm...and OMG do they itch... I sometimes, I get a rash out of nowhere and I use Calamine lotion (to stop the itch), and other times I use rubbing alcohol. IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 I'm Back! Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl 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 June 21, 2008 Report Share Posted June 21, 2008 Irene... I can 'feel' the spots before I see them...like a little rough spot...looks a bit like dry skin patch but smaller than the size of a pencil erasure. When scratched they turn white and then eventually brown. Really dumb things. I'm now feeling a 'new one'... looks almost like a smallpox scar at first. I suppose I should/could go to a Dermatologist but I can't bear ONE MORE DR OR ANY MORE TESTS! At least not right now. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! I'm Back! Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl 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...
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