Re: Re: Confusion - Report from University of Chicago

[Guest guest]

I know, I know, but I can be sad if I want to! Enough is just damn enough!

Well, for sure you are a trail blazer Bruce so we will learn more through your research.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Confusion - Report from University ofChicago>>>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also, I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>

[Guest guest]

Bruce.....hmmmm...".mostdoctors I've talked to do not believe connective tissue disease causes UIP, like it does NSIP."

Hmmmmm. I do not have CTD but I do have NSIP.

Couldn't we at least count on consistency?????

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Confusion - Report from University ofChicago>>>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also, I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>

[Guest guest]

Bruce,

Yeah you're coming up with the same kinds of questions I would have. Part of the problem of course is that this field is changing so fast and they're learning so much that what was true last month is not necessarily true this month.

It's true that UIP is not normally associated with an auto-immune disease but that doesn't mean it can't happen. The whole auto-immune field is still so very young, they don't know way more than they know. The whole concept of autoimmunity has only been around and accepted by mainstream medicine since the late 50's early 60's.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Confusion - Report from University ofChicago>>>> As many know I recently went to the University of Chicago Medical> Center, one of the 13 Centers of Excellence for IPF. Previously I had> the opinions of the three local pulmonologists and the

pathologyreports> from the local pathologist and Mayo Clinic in sdale, AZ.>> Now the opinion before was straight forward UIP/IPF and no believethat> I had an autoimmune disease or connective tissue disease as perhapsmore> appropriately labelled. However, in the Mayo pathology report therewere> a couple of items mentioned as atypical. Plus I had some blood tests a> bit out of range, but that was considered a normal variable. Last, Ihad> also experienced swollen lymph nodes and swallowing and esophagus> problems.>> So I got a return call from the nursing coordinator today and she read> from the report that is in the mail. Their findings confirm what they> had as suspicions all along and that is they believe that I do have an> unidentified connective tissue disease. It may well have just not> presented itself fully yet. Also,

I've heard they can show first and> then be masked by UIP/IPF. Now, I don't have the report yet so can't> fully review all the findings and details. After I have reviewed, Iwill> have more discussions with them and they will talk to my local> pulmonologist.>> The significance is that if it is caused by a connective tissuedisease,> then by treating that disease you can slow down the progression of the> IPF. Which of course brings us to the treatment, which is prednisone.> The recommendation is to start with small doses and then to reduce> further from that. didn't know what small doses meant butsuspect> its something like 30 mg (maybe 40) reducing to 20 mg as opposed tothe> 60 mg often used for PF.>> So, I'll start working on my long list of questions when I get the> report. Until then, I'll enjoy San . But looks like I'm

goingto> find myself weighing probabilities and quality vs. quantity of life> under best and worst cases. I already have a million scenarios and> questions to cover with the doctor. For instance, if I started with 30> mg but found within the first 30 days it was affecting my mentalhealth> enough to want off, how long would it take to get off, having used it> less than 30 days. At what point do you cross the line that creates a> long agonizing period of withdrawal. What are the odds their guess of> connective tissue is right? What if the prednisone works? What if it> doesn't and I've just sacrificed quality of life? Since this opinionis> different than others, should I now have it verified through another> opinion from Duke or Emory, either in person or by sending the testsand> records and slides to one of them?>> My neurologist was concerned

several years ago about autoimmune but> rheumatologist found no indication. It's always lurked in the back ofmy> mind. When she just heard my history over the phone, Brown,> nursing coordinator in Chicago, immediately had suspicions, which iswhy> she chose Dr. Strek who is their expert in PF and Autoimmune diseases.>> Now i know why I never liked science in school. I sensed that itwasn't> definitive like math is. I just didn't know it at the time. It's more> like art and I couldn't draw anything if my life depended onit.....lol>