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Type: Posts; User: nanaeagle

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    First Benlysta infusion

    I had my first infusion on Wednesday. I haven't really been able to notice any change yet, but also haven't had any ill effects. I started a flare a week ago, so I already felt pretty icky and achy...
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    Speaking from the experience of our family my mom...

    Speaking from the experience of our family my mom who dealt with cycles of vomiting and finally ended up on a liquid diet, I would suggest seeking a diagnosis from a teaching hospital if you haven't...
  3. Thread: Benlysta

    by nanaeagle
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    Thank you all for your replies. I hadn't been on...

    Thank you all for your replies. I hadn't been on here for some time, and didn't realize there were replies. My insurance has approved the infusions, something I hadn't really expected. The weight...
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    Wise words from a courageous lady. Thanks for...

    Wise words from a courageous lady. Thanks for sharing!
  5. Take care.

    Take care.
  6. Thread: Benlysta

    by nanaeagle
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    Benlysta

    My rheumy is increasing my Arava, hoping to get me out of the Prednisone cycle. I cannot be off at least a low dose of Prednisone for more than a couple of weeks without flaring. This latest flare...
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    During a flare, I have to urinate frequently and...

    During a flare, I have to urinate frequently and immediately or I don't go for hours. When my bladder is full, my brain doesn't seem to get the signal until it's almost too late or is too late....
  8. Thread: Good New

    by nanaeagle
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    That's great news! So glad you don't have...

    That's great news! So glad you don't have Parkinson's. I take Lyrica and have had no evil side effects. I was on Gabapentin, but when the dose would wear off, the neuropathy pain was immediate and...
  9. Thread: Lost Voice

    by nanaeagle
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    Lost Voice

    Does anyone else lose their voice during a flare? When I am in a flare, my voice randomly comes and goes. As a teacher, this is a very irritating development. I drink fluids as much as possible...
  10. I am a schoolteacher who works with students...

    I am a schoolteacher who works with students diagnosed as having learning disabilities (I prefer to say Learning Differences). Last year the Lupus played havoc with my ability to perform well at...
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    Hi Kim. Early makes all the difference. Prayers...

    Hi Kim. Early makes all the difference. Prayers for peace of mind while you wait.
  12. Thread: Adjusting

    by nanaeagle
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    Thanks. Mom got her first chemo Thurs. and is...

    Thanks. Mom got her first chemo Thurs. and is having nerve block on Mon. We are getting into some semblance of a routine around here (they live next door). Thanks also for the info. I didn't even put...
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    Congratulations! It's great to have someone so...

    Congratulations! It's great to have someone so supportive.
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    Praying this takes you out of flare mode and you...

    Praying this takes you out of flare mode and you get to live without the flare trying to redirect the orchestration of your life. Best wishes.
  15. Thread: Adjusting

    by nanaeagle
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    Adjusting

    I have been taking Plaquenil for three months now with good results. I had one major flare but didn't recognize it because of no fatigue. I thought I was just having a hip problem. My gp shut it down...
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    My ex-GP would ask me, "To what do you attribute...

    My ex-GP would ask me, "To what do you attribute your symptoms?" Drove me crazy! Thankfully, he finally sent me to a neurologist who didn't ask me to diagnose myself.
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    Sticky: You know you had brain fog when you open the...

    You know you had brain fog when you open the dishwasher the next morning to find the grandson's sippee cup, freshly washed, lid still on, juice inside.
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    Please let your doctor know or go to an emergency...

    Please let your doctor know or go to an emergency room. Two years ago my husband and I went to the urgent care clinic for what he thought was inflamation of an old chest injury around his sternum....
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    Thank you, SleepyInSeattle. That's good to know....

    Thank you, SleepyInSeattle. That's good to know. I wasn't quite sure what was up with that since it seems to be happening more and more frequently. It seems I'm always either adding to my layers or...
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    Random chilling and sweating

    Does anyone else chill and then break out in sweat. I never register a fever on my home thermometer when this happens. In fact, my temp. is usually below normal. I was running a low-grade temp. at my...
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    Thank you all for the support and wise words of...

    Thank you all for the support and wise words of experience. Believe me, I'm in no hurry to be on any new drugs or to have a Lupus label. Immunosuppressants with my full-time teaching career just do...
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    I've had phantom water trickling down my right...

    I've had phantom water trickling down my right thigh more than once, and one morning I drove to work with one wet foot, only there was no water anywhere. Still made me look though.
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    Frustrated (sorry this is so long)

    After several years of weird symptoms that intensified over the last two years, I was finally referred to a neurologist. I was in the end of a flare and had called to get on the cancellation list. ...
  24. Thread: Long vent

    by nanaeagle
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    Vent away! Some people just don't get it. To...

    Vent away! Some people just don't get it. To qoute Marlo Thomas, "My father said there were two kinds of people in the world: givers and takers. The takers may eat better, but the givers sleep...
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    Relieved to find you

    So happy to have found you all. I was diagnosed by my neurologist in October of this year based on my long-term symptoms and blood work (I was able to get in during a flare). Can't get into a...
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