A PF Newbie - Little History

[Guest guest]

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.org

Tom