Hi Tom

[Guest guest]

Glad you found the group but sorry you had to be here. Welcome.

Feel free to air out whatever feelings you have here in this group

and be comfy about it. Nobody is the same, we are all from

different walks with different DX's.

One thing is a constant - this sucks.

S, Lubbock, TX

NSIP w/PF et al

>

> 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

>