Re: Re: Another AOSD with Likely PF

[Guest guest]

If you find out that being D deficient is related to IPF please, please let me know as my doctor wants me on calcium supplement and vitamin D because my bone density is so bad and my Vitamin D (started to just put VD then realized that would be too strange an abbreviation) is almost non-existent. Because of some of my meds I am limited severely on how much sun I can get and dairy products and me just don't get along. So, anywho, let me know if you find out anything.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: dyanebillings

Sent: Wednesday, May 27, 2009 11:02 AM

To: Breathe-Support

Subject: Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ==================================================> I am from Watauga Texas, I have been a member for awhile, but Irarely post, but I do read them. I was wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not get red. Funny huh?>> My rheumy has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do somecleaning, after they get home its undone plus more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ===================================>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

i have found that when i'm exposed to an irritant such as perfume and/or aftershave, and i'm SOB, my face gets very red.

ken o.

To: Breathe-Support Sent: Wednesday, May 27, 2009 11:02:40 AMSubject: Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ============ ========= ========= ========= ========= ==> I am from Watauga Texas, I have been a member for awhile, but Irarely post, but I do read them. I was

wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not get red. Funny huh?>> My rheumy

has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do somecleaning, after they get home its undone plus

more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ============ ========= ========= =====>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

i have found that when i'm exposed to an irritant such as perfume and/or aftershave, and i'm SOB, my face gets very red.

ken o.

To: Breathe-Support Sent: Wednesday, May 27, 2009 11:02:40 AMSubject: Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ============ ========= ========= ========= ========= ==> I am from Watauga Texas, I have been a member for awhile, but Irarely post, but I do read them. I was

wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not get red. Funny huh?>> My rheumy

has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do somecleaning, after they get home its undone plus

more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ============ ========= ========= =====>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

i have found that when i'm exposed to an irritant such as perfume and/or aftershave, and i'm SOB, my face gets very red.

ken o.

To: Breathe-Support Sent: Wednesday, May 27, 2009 11:02:40 AMSubject: Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ============ ========= ========= ========= ========= ==> I am from Watauga Texas, I have been a member for awhile, but Irarely post, but I do read them. I was

wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not get red. Funny huh?>> My rheumy

has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do somecleaning, after they get home its undone plus

more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ============ ========= ========= =====>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

I have a low Vit. D count. But I can not go out into the sun and I don't drink milk (I drink soy milk). For the pass 2 months I have been on Vit. D. supplements and think I feel better.

Jodee

Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ==================================================> I am from Watauga Texas, I have been a member for awhile, but Irarely post, but I do read them. I was wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not get red. Funny huh?>> My rheumy has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do somecleaning, after they get home its undone plus more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ===================================>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

I have a low Vit. D count. But I can not go out into the sun and I don't drink milk (I drink soy milk). For the pass 2 months I have been on Vit. D. supplements and think I feel better.

Jodee

Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ==================================================> I am from Watauga Texas, I have been a member for awhile, but Irarely post, but I do read them. I was wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not get red. Funny huh?>> My rheumy has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do somecleaning, after they get home its undone plus more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ===================================>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

i think my calcium pills come with vitamin D

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Another AOSD with Likely PFTo: Breathe-Support Date: Wednesday, May 27, 2009, 6:14 PM

I have a low Vit. D count. But I can not go out into the sun and I don't drink milk (I drink soy milk). For the pass 2 months I have been on Vit. D. supplements and think I feel better.

Jodee

Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ============ ========= ========= ========= ========= ==> I am from Watauga Texas, I have been a member for awhile, but

Irarely post, but I do read them. I was wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not

get red. Funny huh?>> My rheumy has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do

somecleaning, after they get home its undone plus more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ============ ========= ========= =====>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

i think my calcium pills come with vitamin D

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Another AOSD with Likely PFTo: Breathe-Support Date: Wednesday, May 27, 2009, 6:14 PM

I have a low Vit. D count. But I can not go out into the sun and I don't drink milk (I drink soy milk). For the pass 2 months I have been on Vit. D. supplements and think I feel better.

Jodee

Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ============ ========= ========= ========= ========= ==> I am from Watauga Texas, I have been a member for awhile, but

Irarely post, but I do read them. I was wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not

get red. Funny huh?>> My rheumy has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do

somecleaning, after they get home its undone plus more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ============ ========= ========= =====>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>

[Guest guest]

i think my calcium pills come with vitamin D

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Another AOSD with Likely PFTo: Breathe-Support Date: Wednesday, May 27, 2009, 6:14 PM

I have a low Vit. D count. But I can not go out into the sun and I don't drink milk (I drink soy milk). For the pass 2 months I have been on Vit. D. supplements and think I feel better.

Jodee

Re: Another AOSD with Likely PF

Quick question, has anyone else with fibro had a vitamin D problem? Afew months ago my oncologist tested me and I had no measurable vit D inmy body. Now since I live in Phoenix and I do go outside I found thishard to believe. Long story short we got my levels back up. Is thiscommon with fribro? ThanksDyane Phoenix IPF 02>> Here is an excerpt from a posting on the Adult Onset Stills DiseaseSupport group board. Sounds likely like PF, that in my humble opinion,should have been caught 3 years ago. Thoughts?>> ============ ========= ========= ========= ========= ==> I am from Watauga Texas, I have been a member for awhile, but

Irarely post, but I do read them. I was wondering about the red facealmost looks like a butterfly shape like Lupus. I also have fibro. Wellfor awhile I noticed getting out of breath easily just walking acrossthe room and when I am tired my face really gets red. Well at the end ofMarch I went into the hospital for pneunomia and was coughing alot, butwhen I started to cough uncontrollably, I would pass out, I was notgetting enough oxygen. Well five days later I had to go home with oxygenof course. I saw a pulmonary specialist, but he wants a CT scan of thefull lungs and a blood gas test. I read the hospital reports from thisvisit and the one three years ago for possible pneumonia and it said mylungs had some scarring. Having fibro, I have of course low vitamin Dlevels also.>> I am wondering if oxygen level and red face is some how connectedbecause when I am on the oxygen, my face does not

get red. Funny huh?>> My rheumy has me off my Kineret shots and thinks I am healed fromStills, I never heard of being cured just go into remission. But MyRheumy is a jerk and likes to flaunt his knowledge of everything.>> I am hoping they find what is causing the low oxygen levels because Ireally really really hate having to be connected to a machine with a 30foot hose and of course it gets caught on everything! and then have tocarry a portable one when I need to go to doctors appts or do errands ortake son back and forth to school. Plus, it is the pits, because we aretrying to paint and redo our house and the hose gets caught and I amalready tired with fibro, I get soooooooo> frustrated with trying to get anything done. Sometimes, I just startcrying and sometimes my 19 and 15 year old sons and husband are notalways sympathic are very helpful around the house. If I do

somecleaning, after they get home its undone plus more mess. I am sorry thisis long, but I just wanted to vent and also wanted to know if anyoneelse had low oxygen levels, red face, shortness of breath, chest painsfrom the lungs?> Well I hope everyone is doing okay> Death to the Dragon!> from Watauga, Texas> ============ ========= ========= =====>> BTW - Those of us with Stills Disease call it the "Dragon" because ofthe high fevers we can experience. Sometimes up to 105 for about 2hours or more, once or twice a day, like clockwork. No drugs bring thetemp down, just have to wait them out.>>> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008>