Re: A PF Newbie - Little History

[Guest guest]

Tom ... I just want to welcome you to our board. It's not a "happy destination" but it is the best soft place you can land.

I personally don't know anything about what you describe even though I do have IPF. Dx (diagnosed more than 2 years ago and have been fairly stable since).

I'm positive you will get replies from our board...there is always someone here to reply to you with information.

Sure sounds like you have already been through so much!

Where do you live and how old are you? Married, kids to support you?

Keep on keepin' on Tom.

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

A PF Newbie - Little History

Hi everyone.I just joined your support group and wanted to give a little history. Maybe there is someone else out there with a similar series of events I can hook up with to compare notes.My story starts out back in Sept 2003 with what was dx as an infection of one of my salivary glands. Treated that with antibiotics and probing into the salivary gland duct. From there I started having recurring problems with my feet and ankles. There was a lot of swelling and dx each time with cellulitis of my ankles and feet. Ultrasounds for clots were always negative and antibiotics cleared them up. Sometimes it was one leg, then the other and sometimes both. Assumed this was related to venous vein problems. Finally was admitted after a fairly bad attack and had an infectious disease consult with infectious desease Doc who decided that it did not appear these were infection related and referred me to my current Rheumatologist. After many tests and as symptoms increased and changed, I was DX 5/2005 with an autoimmune condition known as Adult Onset Still's Disease. It is DX from ruling out many other conditions. Symptoms of mine were, polyartcular arthritis, splenomegaly, anemia, high spiking fevers and a salmon colored rash. The fevers are a lot of fun. Mine occurred 2 times a day and rose to 104+. Mine happened at about 6PM and then 3AM and each lasted about 2 hours. This is fairly common although some effected may have only 1 fever per day. The fevers can occur for several months or longer and then go away. Other systemic issues can be inflammation of the liver, pleural effusions, pericarditis and pericardial effusions. Labs are usually screwed up with increase Sed rate and CRP. RA Factor and Lupus ANA are negative. The condition is very related to the Systemic form of Juvenile Rheumatoid Arthritis, only it occurs after 18 years old. For Stills have been treated with Remicade infusion every 6 weeks and 20mg of prednisone a day and 25 mg methotrexate per week. Remicade and Methotrexate had to be on hold when I had a skin cancer removed from my scalp. Got infected and off meds from November 07 until Feb 08. Restarted in Feb then the pulmonary stuff kicked into high gear.Well, anyway.....Got hit with asthma in 11/2006. got this pretty much controlled until a bad case put me in the hospital again March 2008 after just ready to get back into the treament plan. Controlled the March asthma with IV Solumedrol. Then admitted again with O2 sat of 86% in April 08. Chest xrays normal but bilateral Pulmonary infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that my infiltrates were due to the Stills autoimmune disease. Have been in the hospital 2 more times with infections since then. So now I have a diagnosis of Interstitial Lung Disease/Pulmonary Fibrosis to add to my Still's Disease. By the way, last visit to my rheumatologist showed me to have Sjrogren's syndrome as well.Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6 weeks and Procrit prn depending on my hemoglobin level.That is my story and I have seen only 2 others on the Stills site who may be related. My story is probably similar to some of the individuals with PF and RA.Here is the Stills Foundation site, if anyone is interested.http://stillsdisease.orgTom

[Guest guest]

Hi Tom, Welcome to the board! I was diagnosed with PF, on March/07 and Raynaud's Disease 09/07. My PF was caused due to the Methotrexate medication.

Saw you have been treated with Remicade and Methotrexate 25mg. I'm on the same combination of meds for Crohn's Disease, with Remicade 455mg was every 8 weeks, now it's every 6 and Methotrexate 25mg per week. I have Arthritis (Crohn's related). Last week they found I have Anemia and yesterday started the tablets of Slow Fe. I'm also low on Vitamin B12, I do injections once a month.

I've been diagnosed with Asthma since Feb/92 (it's been pretty much under control), never required hospitalization for Asthma attack. For PF though, I have stayed overnight in ER or been admitted overnight and 3 litres of oxygen. I hated having the mask on my face. I can't take Prednisone because it has caused my bones to become very weak and break easily.

In July, I was treated for an infection on the (L) hand the 3rd index finger with the medication ANCEF (IV antibiotics for 7 days). They aren't sure why it happenned or if it was Cellulitis. One thing they were sure of was because I'm on Low Immune medications...it's very easy for my immune system to develop infections.

Irene

A PF Newbie - Little History

Hi everyone.I just joined your support group and wanted to give a little history. Maybe there is someone else out there with a similar series of events I can hook up with to compare notes.My story starts out back in Sept 2003 with what was dx as an infection of one of my salivary glands. Treated that with antibiotics and probing into the salivary gland duct. From there I started having recurring problems with my feet and ankles. There was a lot of swelling and dx each time with cellulitis of my ankles and feet. Ultrasounds for clots were always negative and antibiotics cleared them up. Sometimes it was one leg, then the other and sometimes both. Assumed this was related to venous vein problems. Finally was admitted after a fairly bad attack and had an infectious disease consult with infectious desease Doc who decided that it did not appear these were infection related and referred me to

my current Rheumatologist. After many tests and as symptoms increased and changed, I was DX 5/2005 with an autoimmune condition known as Adult Onset Still's Disease. It is DX from ruling out many other conditions. Symptoms of mine were, polyartcular arthritis, splenomegaly, anemia, high spiking fevers and a salmon colored rash. The fevers are a lot of fun. Mine occurred 2 times a day and rose to 104+. Mine happened at about 6PM and then 3AM and each lasted about 2 hours. This is fairly common although some effected may have only 1 fever per day. The fevers can occur for several months or longer and then go away. Other systemic issues can be inflammation of the liver, pleural effusions, pericarditis and pericardial effusions. Labs are usually screwed up with increase Sed rate and CRP. RA Factor and Lupus ANA are negative. The condition is very related to the Systemic form of Juvenile Rheumatoid

Arthritis, only it occurs after 18 years old. For Stills have been treated with Remicade infusion every 6 weeks and 20mg of prednisone a day and 25 mg methotrexate per week. Remicade and Methotrexate had to be on hold when I had a skin cancer removed from my scalp. Got infected and off meds from November 07 until Feb 08. Restarted in Feb then the pulmonary stuff kicked into high gear.Well, anyway.....Got hit with asthma in 11/2006. got this pretty much controlled until a bad case put me in the hospital again March 2008 after just ready to get back into the treament plan. Controlled the March asthma with IV Solumedrol. Then admitted again with O2 sat of 86% in April 08. Chest xrays normal but bilateral Pulmonary infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that my infiltrates were due to the Stills autoimmune disease. Have been in the hospital 2 more times with infections

since then. So now I have a diagnosis of Interstitial Lung Disease/Pulmonary Fibrosis to add to my Still's Disease. By the way, last visit to my rheumatologist showed me to have Sjrogren's syndrome as well.Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6 weeks and Procrit prn depending on my hemoglobin level.That is my story and I have seen only 2 others on the Stills site who may be related. My story is probably similar to some of the individuals with PF and RA.Here is the Stills Foundation site, if anyone is interested.http://stillsdiseas e.orgTom

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

Thanks to the ones who have welcomed me. It sounds like there are

some similarities we share.

thanks to MamaSher for reminding me that it is not just me......

So, on a personal note.

I live in SE PA about 45 miles west of Philly. My wife, Cheryl and I

have been married 36 years and have lived in Upstate and Northern NY,

Nashville, Dunedin Fl and finally here in Gilbertsville PA. I am 60

years old. We have a son, who is 33, is developmentally

disabled with a touch of CP. He is non verbal so we communicate in

Sign Language. (when the arthritis is acting up, it feels like

talking with a mouth full of cotton when hand shapes are required,

LOL) Matt still lives at home and attends a work program daily. Amy

Jo is our daughter and is 25 living in San .

I am currently on Short Term Disability from work and dealing with

the Insurance company regularly. But my background is in Laboratory

Medicine, Clinical Chemistry. However for the last 13 years I have

been working in IT (computing)

Tom

>

> Hi Tom, Welcome to the board! I was diagnosed with PF, on March/07

and Raynaud's Disease 09/07. My PF was caused due to the Methotrexate

medication.

>

> A PF Newbie - Little History

>

>

> Hi everyone.

>

> I just joined your support group and wanted to give a little

> history. Maybe there is someone else out there with a similar

series

> of events I can hook up with to compare notes.

>

>

>

>

>

>

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[Guest guest]

Tom,

Welcome aboard! I'm sorry you have reason to be here but since you do, it's good that you found us. It does sound like you've got a complex history and it's interesting to note that you've been hit with more than one autoimmune disease. (Stills and Sjorgren's) There are several here with dual or multiple autoimmune dx. I have uctd (undifferentiated connective tissue disease) that the feel probably caused my fibrosis even though the fibrosis was diagnosed first.

I hope you will find the support and friendship here that I have since I joined slightly over 2 years ago. I'm 49 years old, divorced, mother of a 23 year old son who lives about 3 hours away from me. I live now in Durham NC but I lived most of my life in the suburbs of NYC and moved to Durham late last fall. I'm a nurse by education. Prior to my illness I worked in the pharmaceutical industry but am now on SSDI.

Again, welcome to the group!!

Beth

Moderator

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

A PF Newbie - Little History

Hi everyone.I just joined your support group and wanted to give a little history. Maybe there is someone else out there with a similar series of events I can hook up with to compare notes.My story starts out back in Sept 2003 with what was dx as an infection of one of my salivary glands. Treated that with antibiotics and probing into the salivary gland duct. From there I started having recurring problems with my feet and ankles. There was a lot of swelling and dx each time with cellulitis of my ankles and feet. Ultrasounds for clots were always negative and antibiotics cleared them up. Sometimes it was one leg, then the other and sometimes both. Assumed this was related to venous vein problems. Finally was admitted after a fairly bad attack and had an infectious disease consult with infectious desease Doc who decided that it did not appear these were infection related and referred me to

my current Rheumatologist. After many tests and as symptoms increased and changed, I was DX 5/2005 with an autoimmune condition known as Adult Onset Still's Disease. It is DX from ruling out many other conditions. Symptoms of mine were, polyartcular arthritis, splenomegaly, anemia, high spiking fevers and a salmon colored rash. The fevers are a lot of fun. Mine occurred 2 times a day and rose to 104+. Mine happened at about 6PM and then 3AM and each lasted about 2 hours. This is fairly common although some effected may have only 1 fever per day. The fevers can occur for several months or longer and then go away. Other systemic issues can be inflammation of the liver, pleural effusions, pericarditis and pericardial effusions. Labs are usually screwed up with increase Sed rate and CRP. RA Factor and Lupus ANA are negative. The condition is very related to the Systemic form of Juvenile Rheumatoid

Arthritis, only it occurs after 18 years old. For Stills have been treated with Remicade infusion every 6 weeks and 20mg of prednisone a day and 25 mg methotrexate per week. Remicade and Methotrexate had to be on hold when I had a skin cancer removed from my scalp. Got infected and off meds from November 07 until Feb 08. Restarted in Feb then the pulmonary stuff kicked into high gear.Well, anyway.....Got hit with asthma in 11/2006. got this pretty much controlled until a bad case put me in the hospital again March 2008 after just ready to get back into the treament plan. Controlled the March asthma with IV Solumedrol. Then admitted again with O2 sat of 86% in April 08. Chest xrays normal but bilateral Pulmonary infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that my infiltrates were due to the Stills autoimmune disease. Have been in the hospital 2 more times with infections

since then. So now I have a diagnosis of Interstitial Lung Disease/Pulmonary Fibrosis to add to my Still's Disease. By the way, last visit to my rheumatologist showed me to have Sjrogren's syndrome as well.Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6 weeks and Procrit prn depending on my hemoglobin level.That is my story and I have seen only 2 others on the Stills site who may be related. My story is probably similar to some of the individuals with PF and RA.Here is the Stills Foundation site, if anyone is interested.http://stillsdiseas e.orgTom

[Guest guest]

Hello All

Beth I read from your email “A PF Newbie - Little History” and brought up a couple of questions. Where does everybody live? I know we have some overseas and?

With all the other issues we have is divorce after diagnosis common? I am separated and soon to be. Because of my health? Who knows, but like in an early post it has to be hard on Family/care givers. Any Way

Walt S. Whidbey Island Washington

Walt, Whidbey Island Wa

IPF, NSIP, UIP, DIP 10/06

Life may not be the party we hoped for, but while we are here we might as well dance

Subject: Re: A PF Newbie - Little HistoryTo: Breathe-Support Date: Tuesday, August 12, 2008, 11:27 AM

Tom,

Welcome aboard! I'm sorry you have reason to be here but since you do, it's good that you found us. It does sound like you've got a complex history and it's interesting to note that you've been hit with more than one autoimmune disease. (Stills and Sjorgren's) There are several here with dual or multiple autoimmune dx. I have uctd (undifferentiated connective tissue disease) that the feel probably caused my fibrosis even though the fibrosis was diagnosed first.

I hope you will find the support and friendship here that I have since I joined slightly over 2 years ago. I'm 49 years old, divorced, mother of a 23 year old son who lives about 3 hours away from me. I live now in Durham NC but I lived most of my life in the suburbs of NYC and moved to Durham late last fall. I'm a nurse by education. Prior to my illness I worked in the pharmaceutical industry but am now on SSDI.

Again, welcome to the group!!

Beth

Moderator

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

A PF Newbie - Little History

Hi everyone.I just joined your support group and wanted to give a little history. Maybe there is someone else out there with a similar series of events I can hook up with to compare notes.My story starts out back in Sept 2003 with what was dx as an infection of one of my salivary glands. Treated that with antibiotics and probing into the salivary gland duct. From there I started having recurring problems with my feet and ankles. There was a lot of swelling and dx each time with cellulitis of my ankles and feet. Ultrasounds for clots were always negative and antibiotics cleared them up. Sometimes it was one leg, then the other and sometimes both. Assumed this was related to venous vein problems. Finally was admitted after a fairly bad attack and had an infectious disease consult with infectious desease Doc who decided that it did not appear these were infection related and referred me to

my current Rheumatologist. After many tests and as symptoms increased and changed, I was DX 5/2005 with an autoimmune condition known as Adult Onset Still's Disease. It is DX from ruling out many other conditions. Symptoms of mine were, polyartcular arthritis, splenomegaly, anemia, high spiking fevers and a salmon colored rash. The fevers are a lot of fun. Mine occurred 2 times a day and rose to 104+. Mine happened at about 6PM and then 3AM and each lasted about 2 hours. This is fairly common although some effected may have only 1 fever per day. The fevers can occur for several months or longer and then go away. Other systemic issues can be inflammation of the liver, pleural effusions, pericarditis and pericardial effusions. Labs are usually screwed up with increase Sed rate and CRP. RA Factor and Lupus ANA are negative. The condition is very related to the Systemic form of Juvenile Rheumatoid

Arthritis, only it occurs after 18 years old. For Stills have been treated with Remicade infusion every 6 weeks and 20mg of prednisone a day and 25 mg methotrexate per week. Remicade and Methotrexate had to be on hold when I had a skin cancer removed from my scalp. Got infected and off meds from November 07 until Feb 08. Restarted in Feb then the pulmonary stuff kicked into high gear.Well, anyway.....Got hit with asthma in 11/2006. got this pretty much controlled until a bad case put me in the hospital again March 2008 after just ready to get back into the treament plan. Controlled the March asthma with IV Solumedrol. Then admitted again with O2 sat of 86% in April 08. Chest xrays normal but bilateral Pulmonary infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that my infiltrates were due to the Stills autoimmune disease. Have been in the hospital 2 more times with infections

since then. So now I have a diagnosis of Interstitial Lung Disease/Pulmonary Fibrosis to add to my Still's Disease. By the way, last visit to my rheumatologist showed me to have Sjrogren's syndrome as well.Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6 weeks and Procrit prn depending on my hemoglobin level.That is my story and I have seen only 2 others on the Stills site who may be related. My story is probably similar to some of the individuals with PF and RA.Here is the Stills Foundation site, if anyone is interested.http://stillsdiseas e.orgTom

[Guest guest]

Tom ... I don't remember what I said to you that reminded you it "is not just you"...I hope I didn't sound rude!! I'm pretty outspoken, well "outwritten" maybe. lol.

We have a son in Phoenixville. A "big wig" with IBM. He is a computer genius.

I'm glad Matt is able to live at home with you and Cheryl.

The signing reminds me of when my daughter Zoë was in the third grade she volunteered to sign and help the little non-speaking kids who needed tutoring. She got out of school early and went to a special class. I was so proud of her and she did it all on her own.

Do Matt and Amy Jo know about your disease?

Hello to all your family Tom.

I turned 70 Aug 4th. The big 7 0. Wow. It seems big too.

Keep on keepin' on!

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

A PF Newbie - Little History> > > Hi everyone.> > I just joined your support group and wanted to give a little > history. Maybe there is someone else out there with a similar series > of events I can hook up with to compare notes.> > > > > > __________________________________________________________> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail.yahoo.ca>

[Guest guest]

Walt ... did your wife tell you your health is the reason for divorce? I'm thinking she must have given you a reason...

I'm more amazed at the couples who stay together "after dx" and help each other through the maze. Our caregivers are such wonderful people...well, most of them. The word is out that there are some who are not wonderful. lol. But before I have rocks coming out my computer, neither are we wonderful all the time!

I'm sorry you are going through a divorce at this time. You need family support. Is your son supportive to you?

There is a database you can check out as to where we all live and photos to look at as well. Most of us have our state with our signature.

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

A PF Newbie - Little History

Hi everyone.I just joined your support group and wanted to give a little history. Maybe there is someone else out there with a similar series of events I can hook up with to compare notes.My story starts out back in Sept 2003 with what was dx as an infection of one of my salivary glands. Treated that with antibiotics and probing into the salivary gland duct. From there I started having recurring problems with my feet and ankles. There was a lot of swelling and dx each time with cellulitis of my ankles and feet. Ultrasounds for clots were always negative and antibiotics cleared them up. Sometimes it was one leg, then the other and sometimes both. Assumed this was related to venous vein problems. Finally was admitted after a fairly bad attack and had an infectious disease consult with infectious desease Doc who decided that it did not appear these were infection related and referred me to my current Rheumatologist. After many tests and as symptoms increased and changed, I was DX 5/2005 with an autoimmune condition known as Adult Onset Still's Disease. It is DX from ruling out many other conditions. Symptoms of mine were, polyartcular arthritis, splenomegaly, anemia, high spiking fevers and a salmon colored rash. The fevers are a lot of fun. Mine occurred 2 times a day and rose to 104+. Mine happened at about 6PM and then 3AM and each lasted about 2 hours. This is fairly common although some effected may have only 1 fever per day. The fevers can occur for several months or longer and then go away. Other systemic issues can be inflammation of the liver, pleural effusions, pericarditis and pericardial effusions. Labs are usually screwed up with increase Sed rate and CRP. RA Factor and Lupus ANA are negative. The condition is very related to the Systemic form of Juvenile Rheumatoid Arthritis, only it occurs after 18 years old. For Stills have been treated with Remicade infusion every 6 weeks and 20mg of prednisone a day and 25 mg methotrexate per week. Remicade and Methotrexate had to be on hold when I had a skin cancer removed from my scalp. Got infected and off meds from November 07 until Feb 08. Restarted in Feb then the pulmonary stuff kicked into high gear.Well, anyway.....Got hit with asthma in 11/2006. got this pretty much controlled until a bad case put me in the hospital again March 2008 after just ready to get back into the treament plan. Controlled the March asthma with IV Solumedrol. Then admitted again with O2 sat of 86% in April 08. Chest xrays normal but bilateral Pulmonary infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that my infiltrates were due to the Stills autoimmune disease. Have been in the hospital 2 more times with infections since then. So now I have a diagnosis of Interstitial Lung Disease/Pulmonary Fibrosis to add to my Still's Disease. By the way, last visit to my rheumatologist showed me to have Sjrogren's syndrome as well.Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6 weeks and Procrit prn depending on my hemoglobin level.That is my story and I have seen only 2 others on the Stills site who may be related. My story is probably similar to some of the individuals with PF and RA.Here is the Stills Foundation site, if anyone is interested.http://stillsdiseas e.orgTom

[Guest guest]

Walt

I suspect its no different than any other major problem in life and

while it brings some couples even closer than they have been, it tears

others apart. We're all so different and that includes how we react to

every aspect of our lives as individuals or couples.

>

> From: Beth mbmurtha@...

> Subject: Re: A PF Newbie - Little History

> To: Breathe-Support

> Date: Tuesday, August 12, 2008, 11:27 AM

>

>

> Tom,

> Welcome aboard! I'm sorry you have reason to be here but since you do,

it's good that you found us. It does sound like you've got a complex

history and it's interesting to note that you've been hit with more than

one autoimmune disease. (Stills and Sjorgren's) There are several here

with dual or multiple autoimmune dx. I have uctd (undifferentiated

connective tissue disease) that the feel probably caused my fibrosis

even though the fibrosis was diagnosed first.

>

> I hope you will find the support and friendship here that I have since

I joined slightly over 2 years ago. I'm 49 years old, divorced, mother

of a 23 year old son who lives about 3 hours away from me. I live now in

Durham NC but I lived most of my life in the suburbs of NYC and moved to

Durham late last fall. I'm a nurse by education. Prior to my illness I

worked in the pharmaceutical industry but am now on SSDI.

>

> Again, welcome to the group!!

>

> Beth

> Moderator

> Age 48 Fibrotic NSIP 06/06 UCTD 07/08

>

> Change everything. Love and Forgive

>

>

>

>

>

>

> A PF Newbie - Little History

>

>

> Hi everyone.

>

> I just joined your support group and wanted to give a little

> history. Maybe there is someone else out there with a similar series

> of events I can hook up with to compare notes.

>

> My story starts out back in Sept 2003 with what was dx as an

> infection of one of my salivary glands. Treated that with

> antibiotics and probing into the salivary gland duct. From there I

> started having recurring problems with my feet and ankles. There was

> a lot of swelling and dx each time with cellulitis of my ankles and

> feet. Ultrasounds for clots were always negative and antibiotics

> cleared them up. Sometimes it was one leg, then the other and

> sometimes both. Assumed this was related to venous vein problems.

> Finally was admitted after a fairly bad attack and had an infectious

> disease consult with infectious desease Doc who decided that it did

> not appear these were infection related and referred me to my current

> Rheumatologist. After many tests and as symptoms increased and

> changed, I was DX 5/2005 with an autoimmune condition known as Adult

> Onset Still's Disease. It is DX from ruling out many other

> conditions. Symptoms of mine were, polyartcular arthritis,

> splenomegaly, anemia, high spiking fevers and a salmon colored rash.

> The fevers are a lot of fun. Mine occurred 2 times a day and rose to

> 104+. Mine happened at about 6PM and then 3AM and each lasted about

> 2 hours. This is fairly common although some effected may have only

> 1 fever per day. The fevers can occur for several months or longer

> and then go away. Other systemic issues can be inflammation of the

> liver, pleural effusions, pericarditis and pericardial effusions.

> Labs are usually screwed up with increase Sed rate and CRP. RA

> Factor and Lupus ANA are negative. The condition is very related to

> the Systemic form of Juvenile Rheumatoid Arthritis, only it occurs

> after 18 years old. For Stills have been treated with Remicade

> infusion every 6 weeks and 20mg of prednisone a day and 25 mg

> methotrexate per week. Remicade and Methotrexate had to be on hold

> when I had a skin cancer removed from my scalp. Got infected and off

> meds from November 07 until Feb 08. Restarted in Feb then the

> pulmonary stuff kicked into high gear.

>

> Well, anyway.....Got hit with asthma in 11/2006. got this pretty

> much controlled until a bad case put me in the hospital again March

> 2008 after just ready to get back into the treament plan. Controlled

> the March asthma with IV Solumedrol. Then admitted again with O2 sat

> of 86% in April 08. Chest xrays normal but bilateral Pulmonary

> infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that

> my infiltrates were due to the Stills autoimmune disease. Have been

> in the hospital 2 more times with infections since then.

>

> So now I have a diagnosis of Interstitial Lung Disease/Pulmonary

> Fibrosis to add to my Still's Disease. By the way, last visit to my

> rheumatologist showed me to have Sjrogren's syndrome as well.

>

> Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and

> a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6

> weeks and Procrit prn depending on my hemoglobin level.

>

> That is my story and I have seen only 2 others on the Stills site who

> may be related. My story is probably similar to some of the

> individuals with PF and RA.

>

> Here is the Stills Foundation site, if anyone is interested.

>

> http://stillsdiseas e.org

>

> Tom

>

[Guest guest]

MamaSher

No real reason and son my Is only 15 he knows I am sick but I try not to "bring” it home right now But so far things are ok and the board helps tremendously.

Walt, Whidbey Island Wa

IPF, NSIP, UIP, DIP 10/06

Life may not be the party we hoped for, but while we are here we might as well dance

From: Beth <mbmurthayahoo (DOT) com>Subject: Re: A PF Newbie - Little HistoryTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 12, 2008, 11:27 AM

Tom,

Welcome aboard! I'm sorry you have reason to be here but since you do, it's good that you found us. It does sound like you've got a complex history and it's interesting to note that you've been hit with more than one autoimmune disease. (Stills and Sjorgren's) There are several here with dual or multiple autoimmune dx. I have uctd (undifferentiated connective tissue disease) that the feel probably caused my fibrosis even though the fibrosis was diagnosed first.

I hope you will find the support and friendship here that I have since I joined slightly over 2 years ago. I'm 49 years old, divorced, mother of a 23 year old son who lives about 3 hours away from me. I live now in Durham NC but I lived most of my life in the suburbs of NYC and moved to Durham late last fall. I'm a nurse by education. Prior to my illness I worked in the pharmaceutical industry but am now on SSDI.

Again, welcome to the group!!

Beth

Moderator

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

A PF Newbie - Little History

Hi everyone.I just joined your support group and wanted to give a little history. Maybe there is someone else out there with a similar series of events I can hook up with to compare notes.My story starts out back in Sept 2003 with what was dx as an infection of one of my salivary glands. Treated that with antibiotics and probing into the salivary gland duct. From there I started having recurring problems with my feet and ankles. There was a lot of swelling and dx each time with cellulitis of my ankles and feet. Ultrasounds for clots were always negative and antibiotics cleared them up. Sometimes it was one leg, then the other and sometimes both. Assumed this was related to venous vein problems. Finally was admitted after a fairly bad attack and had an infectious disease consult with infectious desease Doc who decided that it did not appear these were infection related and referred me to

my current Rheumatologist. After many tests and as symptoms increased and changed, I was DX 5/2005 with an autoimmune condition known as Adult Onset Still's Disease. It is DX from ruling out many other conditions. Symptoms of mine were, polyartcular arthritis, splenomegaly, anemia, high spiking fevers and a salmon colored rash. The fevers are a lot of fun. Mine occurred 2 times a day and rose to 104+. Mine happened at about 6PM and then 3AM and each lasted about 2 hours. This is fairly common although some effected may have only 1 fever per day. The fevers can occur for several months or longer and then go away. Other systemic issues can be inflammation of the liver, pleural effusions, pericarditis and pericardial effusions. Labs are usually screwed up with increase Sed rate and CRP. RA Factor and Lupus ANA are negative. The condition is very related to the Systemic form of Juvenile Rheumatoid

Arthritis, only it occurs after 18 years old. For Stills have been treated with Remicade infusion every 6 weeks and 20mg of prednisone a day and 25 mg methotrexate per week. Remicade and Methotrexate had to be on hold when I had a skin cancer removed from my scalp. Got infected and off meds from November 07 until Feb 08. Restarted in Feb then the pulmonary stuff kicked into high gear.Well, anyway.....Got hit with asthma in 11/2006. got this pretty much controlled until a bad case put me in the hospital again March 2008 after just ready to get back into the treament plan. Controlled the March asthma with IV Solumedrol. Then admitted again with O2 sat of 86% in April 08. Chest xrays normal but bilateral Pulmonary infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that my infiltrates were due to the Stills autoimmune disease. Have been in the hospital 2 more times with infections

since then. So now I have a diagnosis of Interstitial Lung Disease/Pulmonary Fibrosis to add to my Still's Disease. By the way, last visit to my rheumatologist showed me to have Sjrogren's syndrome as well.Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6 weeks and Procrit prn depending on my hemoglobin level.That is my story and I have seen only 2 others on the Stills site who may be related. My story is probably similar to some of the individuals with PF and RA.Here is the Stills Foundation site, if anyone is interested.http://stillsdiseas e.orgTom

[Guest guest]

Sher, Your son is in Phoenixville? That's

only 20 minutes from me!!!

In fact and Kurt lived in a town house there for two years.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Sher Bauman wrote:

Tom ... I don't remember what I

said to you that reminded you it "is not just you"...I hope I didn't

sound rude!! I'm pretty outspoken, well "outwritten" maybe. lol.

We have a son in Phoenixville. A

"big wig" with IBM. He is a computer genius.

I'm glad Matt is able to live at

home with you and Cheryl.

The signing reminds me of when my

daughter Zoë was in the third grade she volunteered to sign and help

the little non-speaking kids who needed tutoring. She got out of school

early and went to a special class. I was so proud of her and she did it

all on her own.

Do Matt and Amy Jo know about

your disease?

Hello to all your family Tom.

I turned 70 Aug 4th. The big 7

0. Wow. It seems big too.

Keep on keepin' on!

MamaSher, age 69. IPF 3-06, OR.

Nasturtiums

Don't fret about tomorrow, God is already there!

-----

Original Message -----

From:

Tom

To:

Breathe-Support

Sent:

Tuesday, August 12, 2008 11:11 AM

Subject:

Re: A PF Newbie - Little History

Thanks to the ones who have welcomed me. It sounds like there

are

some similarities we share.

thanks to MamaSher for reminding me that it is not just me......

So, on a personal note.

I live in SE PA about 45 miles west of Philly. My wife, Cheryl and I

have been married 36 years and have lived in Upstate and Northern NY,

Nashville, Dunedin Fl and finally here in Gilbertsville PA. I am 60

years old. We have a son, who is 33, is developmentally

disabled with a touch of CP. He is non verbal so we communicate in

Sign Language. (when the arthritis is acting up, it feels like

talking with a mouth full of cotton when hand shapes are required,

LOL) Matt still lives at home and attends a work program daily. Amy

Jo is our daughter and is 25 living in San .

I am currently on Short Term Disability from work and dealing with

the Insurance company regularly. But my background is in Laboratory

Medicine, Clinical Chemistry. However for the last 13 years I have

been working in IT (computing)

Tom

>

> Hi Tom, Welcome to the board! I was diagnosed with PF, on March/07

and Raynaud's Disease 09/07. My PF was caused due to the Methotrexate

medication.

>

> A PF Newbie - Little History

>

>

> Hi everyone.

>

> I just joined your support group and wanted to give a little

> history. Maybe there is someone else out there with a similar

series

> of events I can hook up with to compare notes.

>

>

>

>

>

>

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