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Lupus Story, Long

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Old 07-01-2003, 03:35 PM   #1
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Join Date: Jun 2003
Location: Baltimore, MD, US
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Post Lupus Story, Long

When I was 18, I went to the beach in June for high school "senior week". This was 1977. I came back from the beach and took a day trip to an amusement park with my parents and siblings. During that trip, I became very, very sick. I ended up with my head in my mom's lap on a bench for several hours while the rest of the family did the park thing. My knee, finger and elbow joints swelled and I had a red rash on my lower legs. This was a very sudden onset and the next day I was admitted into the hospital with extremely low platelet counts and debilitating fatigue. My dad even had to carry me into the emergency room because I could not walk under my own power. My bloodwork came back positive for Lupus. I was only 18 and had never been sick in my life. The family doctor started treating me for Lupus. He stuck me on 60 milligrams of prednisone daily and told me (I was only 18, still basically a child), that my appetite may increase from the drug. That was the only potential side effect he discussed with me. 2 years later my life as I had known it had ceased. I was still on a very high dose of prednisone and started having problems. The doctor consulted a Rheumatoligist and I was put on plaquenil and immuran and cytoxin (which I guess was a chemo drug at the time). I still stayed on the prednisone. Then I had another round of vincristen which is another chemo drug. I did not know that there were specialists and let my family doctor continue to plug along and treat. Well, my labs were coming back ok after all of that, but I was still on 60 milligrams of prednisone a day. I was huge, I had no hair, I was not physically or emotionally stable. I made the decision to stop all medication. Stop going to the doctors. Maybe it was a suicide attempt because I knew that I could not go on. But, while I did almost die from withdrawl, I would not take anything else. Now, 20+ years later, I do not clinically have anything except hypothyroidism (which could be auto-immune). I never tested positive for Lupus after I took things into my own hands. However, I have replacement hips and avascular necrosis in most of my joints. I am not sure how the overmedication will affect me. Will I drop dead from a heart attack, stroke, will I get altzheimers, I dont know. I do know that if I had continued letting this doctor tell me how sick I was and how much medication I should take, I would be dead now. I would not have my wonderful son. I don't know if I even had lupus, it all seems like a foggy dream to me. I do know that I was too young to understand what was happening and that my mother's quack doctor (who erroneously convinced her she had epilepsy and had her on dangerous medications for years) had a penchant for over-treating things. The medication I took thinking I was going to die almost killed me. Going off of the medication almost killed me. I am lucky I don't have lupus, but I really can relate to all of you suffering with this disease and the medication. Best Wishes.

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Old 07-05-2003, 08:39 AM   #2
Denise F
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User

Yes, it sounds like you did have Lupus. The problem with lupus is
that the drugs they have for it are as dangerous as the disease.
If drugs are needed they must be used for as short a time as possible. To give your Dr. a little benefit of the doubt, 20 years
ago much less was known about Lupus and it was thought to be
a death sentence. I too, had a lupus attack much like you did.
By the time they found out what I had the attack had lessened.
I still had much pain, fatique etc. But, after reading everything
I could find about Lupus I decided to not take any medicine and
treat it naturally. It took a couple of years to feel more like my old self but I am doing well. Hopefully you will not have Lupus return
but you will always have the predisposition for it so, just keep taking care of yourself .


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