Re: Walt I love your tagline.

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> > > >

> > > > From: Beth <mbmurtha@ .>

> > > > Subject: Re: A PF Newbie - Little History

> > > > To: Breathe-Support@ yahoogroups. com

> > > > 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

> > > >

> > >

> >

>