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My Lupus Story
Jul 7, 2005
I'm not sure if I have ever told my story on this board or not. But in light of the developments today, I need to share it with people who understand.

I am now a 30 year old caucausian male living in the United States. If you looked at me, you'd see a healthy man -- I don't have as much hair as I once did, but you'd never know I have lupus. I'm active and seemingly healthy.

In January 2000, I was dx with Idiopathic Thrombocytopenia Purpura (ITP) -- my platlets were 28,000 and normal platlet level is about 150,000. I began to see a hemotologist and for the next three years, I took no medicine, but had regular blood tests. During this time, my counts hovered between 35,000 and 80,000.

In January 2003, my hemo left my insurance plan and I had to get a new hemo. I had one appointment with the new hemo [in May 2003]-- he ran many of the same initial tests as the first hemo. And, the day after my first appointment, he called me to tell me that I needed to see a rheumy because he thought I might have lupus. [Mind you, as when I was dx'd with ITP, I really wasn't familiar with Lupus].

So, in May 2003, I saw the rheumy for the first time. I had never had any physical symptoms [that I knew about]... my Ana is positive; a couple other tests indicated possibility of lupus... my platelets were still below normal... and I had occassional joint pain, which I attributed to playing the piano growing up, cracking my knuckles and excessive typing. In any case, we decided not to medicate the lupus since my only symptoms were not bothersome to me. Over the next seven months, we monitored my blood and urine.

In December 2003, I broke down -- the pain in my hand grew to the point that I could not use a stapler at work. I called my rheumy and she put me on plaquenil (400 mg/day). This drug really didn't have a chance to start working because in February 2004, I found myself in the ER for the first time.

I was having trouble breathing -- a pain in my right flank when I took deep breaths. They did a cat scan and chest xrays and determined that I had a slight pleural effusion. At the time, the conventional wisdom was that this was caused by scar tissue from a rib injury I had seven years ago playing flag football [that dx we learned today was wrong.] Following this ER visit, I was given a blister pack of pred... this made we feel wonderful... but when I was off the blister pack, the pain came back.

I started 20 mg of prednisone in April 2004... started tapering down after about six weeks... when I got down to alternating 5 mg/2.5 mg [September 2004], the pain came back. Back to the ER, I went... another chest xray confirmed the presence of pleural fluid. Again my rheumy told me that this was just scar tissue and was nothing to worry about. I went back up to 10 mg/day.

I tapered back to 5mg/day in December 2004 and I was fine until we made the decision in May 2005 to try to get me off prednisone. A few weeks after I got married, I started tapering down... 5mg/2.5mg alternating. This was about three weeks ago. A week after I started tapering, the pain came back.

I was not satisfied with the explanation that this was scar tissue... and I've never really believed that I had lupus -- I've always thought I was mis-dx'd. So, instead of calling my rheumy or going to the ER (as my old internist liked to send me), I got a new internist. While she was just a nurse practioner, she was really the only person through this whole ordeal (with the exception of my first hemo) that I felt was a real advocate for me.

I met with Lisa (nurse pract) on Tuesday. She immediately ordered a spiral CT. This not only confirmed the presence of the pleural effusion but also that it had grown considerably. The radiologist was supposed to send me to the ER (as I found out on Wednesday) when my NP called me to ask me why I didn't get to the ER. I met with a pulmonary dr. this morning at 9:30. By 10:30am, 900 cc's of pleural fluid had been drained from my right lung cavity. He showed me all of the ct pictures and xrays... the fluid that was removed today collapsed 30% of my lung -- no wonder I haven't been able to do much the last few weeks.

I really didn't believe that I had lupus until this morning. Tomorrow, I will go on 40 mg of pred because some of the fluid has been trapped at the top of my lung. They have also rx'd fosamax to help with the risk of osteoporousus (sp). I'm really not happy with having to go on such a strong dose of pred, even if my dr thinks that I'll only be on that dose for about three weeks, hopefully.

Two weeks ago, I thought I was about to get off the drugs... now, I know it's going to be a long time before I get off of them.

My message tonight is that yes, men can get lupus... and if you don't think your dr is following the right track, you have to be your own advocate -- you have to push and get your questions answered. Don't let things go untreated.

Rd





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