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Old 07-26-2002, 01:15 AM   #1
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LadyLilac HB User
Question Where to go from here?

Hi, new here. In a nutshell I've been dealing with what they think is Systemic Lupus, RA and possibly Ankylosing Spondylitis. They say that the diseases are similar and I could have any or all of them. I have a the elevated ANA, severe joint pain, stiffness and swelling,fatigue, sun sensitivity, etc.. the basics. I've been on Indomethacin for almost a year now (it's the only NSAID thats ever helped even a little) and 800 mgs of Plaquenil a day for 7 months. I had been doing a bit better (not so much pain and fatigue)until recently. Lately ive been in a great deal of pain in my hands, neck and spine, legs etc and mobility is terrible. Even my ribs and sternum hurt to breath. My question is this: what might my next step be? They say that Indomethacin is the strongest NSAID to be on so now what? What other meds might it be time to try? I will be seeing my doctor of course, just looking for some info before I do. Thanks in advance

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Old 07-27-2002, 10:36 PM   #2
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tholavina HB User
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When I was diagnosed, they had a really hard time getting me to respond to treatment. What it was coming down to was filtering my blood. Basically, a form of dialysis. They were going to put a helplock in my hand, I would come in once a week and they were going to take all my blood out (little by little of course) filter out the antibodies that were causing my problems and put my blood back in "clean". This was extreme, but my body was refusing to respond to steroids and NSAIDs. I'm not sure how much they do this anymore (this was 10 years ago) as I haven't heard of anybody else having had it done. My other option was going on...I believe, don't quote me....Cytotoxin. This was not wanted though, as I was only 13 years old and it would have made me very definately sterile. They would have filtered my blood first. Other than that, I can't tell you a whole lot.

 
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Old 07-28-2002, 01:00 AM   #3
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Join Date: Apr 2002
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scbagrrrl HB User
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Lilac,
I don't know BUT I have always found info on meds online. *****, Ivillage, etc - I usually type in the drug name under Google and read whatever is there - you should get some good info on it that way.

Good luck, keep your chin up and keep us posted.

 
Old 10-10-2002, 05:30 AM   #4
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Join Date: Sep 2002
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Ceya HB User
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My symptoms are very similiar but not as severe. I do not know if you have tried these but I have been on celebrex and later change me to Bextra. It was aproved last Dec. I take it 2x a day. Also transdone(spelling may be off) this helps me sleep so that I don't wake up all during the night. I recently started the plaquenil for lupus 2X a day. Hope this helps the bextra has helped my joint pain and swelling.

 
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