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Old 09-12-2003, 06:54 AM   #1
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ADDY1234 HB User
Unhappy lupus or something else?

It has been a while since I did a post. This will be a fairly long post. Please, anyone who can help me, I would be grateful. If I hear things from someone going through this, maybe I can feel better about it. May of 2002 I developed severe fatigue, swollen painful joints and low grade fever. At the time, red spots showed up on my cheek bones and my eyes were swollen. Blood tests showed +ANA 1:160 - speckled pattern and SedRate - 27. Took 2 months to see rheumotologist - during two months, had 2 shots of decadron. Blood work from specialist was sed rate 5 and ana negative. Gave me provigil. That was July. In October went back to GP - more blood work - this time ANA positive 1:40 - homogeneous, Antithyroglobulin antibodies - 77 and TPO antibodies 46. Tsh and cbc was all withing range. Didn't feel quite as bad. Referred to endo doctor for evaluation in December. Blood work - ana negative, Antithyroglobulin 88 and TPO 56, dhea was high, thyroglobulin level was low, and positive antibodies for EBV. Put on synthroid and celebrex, really no answer here either. Told to stop synthroid when TRH test came back normal at 15.03 - Was still having some minor joint pain and swelling then in August of this year, went back to GP, this time with very painful swollen joints and extreme fatigue again. ANA came back positive again at 1:160 with homogenous pattern. got a shot of decadron and some steroid pills. got a little better. Then 3 weeks ago, came down with extremely painful joints, low grade fever again, fatigue and this time the rash on my face came back and was very bright and my cheeks and eyes were very swollen. My hair is thinning in spots and I am tired all the time. The joint pain comes and goes, very sporadic. The rash and swollen eyes are still there even after taking the prednisone prescription. My GP said something is going on but he is not sure if it is lupus, it could be in the developing stages. Does any of this sound familiar to anyone? I am very frustrated as well as depressed about the entire thing. I feel like a whiner because it seems like there is always something going on. Some symptom that is bothering me. I just want to find out what is wrong with me. I don't expect to feel better just by hearing "you have this".....but I am afraid that if I doe have something that it will cause some type of damage further down the road. Is there something I should be asking my doctor for? Are there any tests that can help tell if this is lupus? Could any other autoimmune disease cause all of this? I am only 30 years old and I feel like I am 70! Please help!

 
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Old 09-13-2003, 02:41 PM   #2
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BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
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Hi, Addy,

I was diagnosed with lupus at age 48 after a few years of extreme fatigue, painful joints, thinning hair, a couple of tiny mouth sores (found by my dentist), and then the sudden appearance of a red oval area (raised edges, no itching)on each forearm. The first doctor I saw put me on Celebrex and had no explanation for the rash. The rash worsened to almost cover my forearms and hands and my joints became swollen. The 2nd doctor was a dermatologist to check what the rash was and that appointment was a waste! The 3rd doctor (internist) I saw checked my ANA, which was 1:40, and he announced I had lupus. He also referred me to a rheumatologist. The astute rheumy noticed my symptoms had worsened after I was put on Celebrex, so he had me stop taking it and put me on Naprosyn for inflammation and Darvocet for pain. As the Celebrex left my system, the rash cleared up completely and the joint swelling went away. The rheumy explained that many people with lupus develop allergies, and I was apparently now allergic to Celebrex and Sulfa (sulfonamide is in Celebrex). He repeated my ANA 6 weeks later and it was 1:600. Lupus.

To help avoid the butterfly face rash, it is important to stay out of the sun as much as possible. My doctor said it was okay to walk to the car from a building, to picnic in the shade in early morning or late afternoon, and to forget a day at the beach. Wear a big hat and good sunscreen, too.

I'd suggest you see a rheumatologist who is familiar with lupus patients. The most common problem lupus patients have to deal with is arthritis and that's a rheumy's speciality.

Good luck! Barbara
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Old 09-16-2003, 08:40 PM   #3
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Join Date: May 2002
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Denise F HB User
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Sorry to hear you're having so much trouble. I can relate to your symptoms I've had those plus some. I was diagnosed over
6 years ago. I have never been on any medication for it. After
reading everything I could get my hands on I tried the alternative
route. I followed the vitamin and herb advice of Dr Weil for
autoimmune diseases. I used relaxation tapes, stayed out of the
sun, cut out dairy products and red meats, increased omega 3's and rested. I was lucky enough to be able to rest for a whole summer. When I had had enough daytime TV to drive me insane
( I couldn't even read cause my eyes wouldn't focus right) I had
my husband take me to lunch to get out of the house. It was there that I met a painter who was painting a mural on the walls and
he invited me to take his painting class. For some reason it sounded so good to me that I started taking classes. I had to drag myself there because I felt so bad. I was worried about holding the brush because I could not hold a pen and write with out
my hand and fingers going numb. But, amazingly I could paint
with no problem. I would completely focus on painting to the
point of losing track of time. The class period would seem to
fly by and best of all during and after class I realized my pain was gone and would stay that way for quite a while. I guess what I'm trying to say is mental attitude can help alot for this disease.
Try to be good to yourself and enjoy what you can when you can.
Luckily my Lupus as been very very mild for the last year. But
I still try to get my rest and stay out of the sun. The potential
for Lupus is always going to be there but don't worry that it
may get worse. Lots of us stay Mild without internal complications.



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