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  • Recently Diagnosed with Lupus, despite unreliable ANA

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    Old 09-15-2006, 12:07 PM   #1
    galpster
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    Recently Diagnosed with Lupus, despite unreliable ANA

    My Rhuemtologist diagnosed me yesterday with Lupus despite my ANA being borderline. It was negative, then postive, then negative, then borderline. My other blood tests were abnormal she did not specify which ones. I do have dead on symptoms for Lupus. She finally said yesterday after looking over my blood work and my symptoms that she was diagnosing me with it and starting me on a 2 week treatment of Medrose (Methyiprednisolone Dose pack) she said is this helps my symptoms then we know we are spot on.

    This is my second day on the stuff and I can already see an improvement in some of my symptoms. She said not to expect any improvement until the 3rd day but I already feel not as stiff and my legs are not aching as bad.

    My question to all of you are any of you on this stuff for long periods of time and how has it worked? How were the side effects I've noticed a long list of some really horrible ones.

    I have fibromyalgia to go along with Lupus as well as I have a major surgery coming up on October 12th to re-fuse my back my l5-s1 verterbra has collasped on itself from the last failed fusion. My body is in a huge mess **sigh** I am relieved for the Lupus diagnosis though it's been a long time coming!

    Any advice, well wishes anything would certianly help this newby whose body is in total chaos -

    God bless you all!

    Last edited by galpster; 09-15-2006 at 12:10 PM.

     
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    Old 09-16-2006, 06:10 AM   #2
    Baybreeze
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    Re: Recently Diagnosed with Lupus, despite unreliable ANA

    Hi,

    I also have lupus, fibromyalgia and I'm having lumbar laminectomy this coming Thursday. I had flare ups over 17 years and hadnt been diagnosed until about 2 1/2 years ago or so. At that time I had obvious swelling/inflammation in joints, pain, stiffness, muscle spasms, extreme fatigue, eye swelling..and finally for the first time in my life saw a rheumatologist. In previous years, I went to see dermatologists, internists, eye doctors, podiatrist, orthopedist,etc...different doc for each symptom that popped up. But only once did I have a high ANA, which was tested by the Derm who suspected lupus. At that time I had no insurance so I never followed up with it, I just suffered through. I had told the rheumy everything throughout the yrs and he sent me for tests too. And all the tests came back "normal" even though I had clear inflammation, even the sed rate & other tests for inflammation came back normal. But from what I told him & from what he saw, he diagnosed me with lupus and started me on Prednisone (which is an oral steroid, something similar to Medrol). I took it and tapered off over 8 months and BOYY for the first time since I was 20 I felt normal again! The pred even helped what the doc said were fibromyalgia symptoms. (this is odd though, b/c everyone seems to say that pred does NOT help fibro....maybe I dont have fibro then). Since then I've developed spine problems as well, and he gave me Medrol dose pack when I was in severe pain and had some visible swelling along my spine. My Medrol pack was a 6 day dose, that started with a high dosage, then tapered down each day until it was done. The first 2 days for me were great (except I still had a some lumbar pain) but then after the 2nd day, I got worse again. And when I was totally done, I felt like I had a major flare up! But since I'm also on Plaquenil, it didnt last too long.

    For me personally, I did not seem to have any side effects. I took Pred much longer than Medrol...and I actually lost some weight while on it (I think due to the fact I could MOVE and exercise again). My appetite also decreased. It's odd though because steroids usually cause weight gain, appetitie increase, sometimes skin problems, bruising, and other things....my body seemed to be affected in opposite. However.....I also had a series of 3 epidural steroid injections into my spine (over 6 weeks) and I did gain a little weight and got moon face (and supposedly the epidurals arent supposed to affect one systemically, yeah right). When those shots wore off, I felt as if I was hit by a freight train. I had more pain, burning, stiffness, swelling everywhere, including up & down every inch of my spine..than I ever had in my life. But thankfully, that wore off over 3-4 weeks (my rheumy said it wouldnt last too long due to me being on Plaquenil).

    Again, everyone's body reacts differently to steroids and being on a short term course of it, it may not affect you too much. But you really won't know until you take it. I want to wish you luck and a good recovery in your upcoming surgery! I hope you nor I flare up afterwards (as that is a big worry of mine)

     
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