Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Isn't Whidbey Island one of those quaint little places we read about that has to have mail delivered by boat? It sounds lovely, just from the name. S, Lubbock, TX NSIP w/PF et al > > > 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 > Quote Link to comment Share on other sites More sharing options...
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