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Type: Posts; User: nanaeagle

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    Thanks for your words of wisdom. I am breathing...

    Thanks for your words of wisdom. I am breathing much easier. My next rheumy appointment is Friday. I have a long list of questions for my doctor. As of now, I am on two diabetes meds.---pill form. I...
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    Thanks for the cyber hugs.

    Thanks for the cyber hugs.
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    The one test known to man I haven't had. So sorry...

    The one test known to man I haven't had. So sorry you feel so bum. May you find the right meds at the right doses to work for you.
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    Prednisone Dilemma

    I normally take a 10 mg. maintenance dose of Prednisone along with my Plaquenil and monthly Benlysta infusions. Three weeks ago, I began having difficulty breathing (oh yeah, I also take Symbicort,...
  5. Thread: benelysta

    by nanaeagle
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    Bonita, I forgot to look at the date of your...

    Bonita, I forgot to look at the date of your post. I don't blame you one bit. It is a big decision. The side effects and cost vs. the actual benefits are huge considerations. So far, my insurance has...
  6. Thread: benelysta

    by nanaeagle
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    I am getting ready for my sixth infusion. I feel...

    I am getting ready for my sixth infusion. I feel I've had more energy, but I am still fighting flares. I do notice a difference in how I feel during the week before the infusion, like my body knows...
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    Thanks. I just saw this. I'll have to check it...

    Thanks. I just saw this. I'll have to check it out. My rheumy wants to give it six months. I just had my third dose on Tuesday. My loading doses kept being postponed because of...
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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...
  10. 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!
  12. Take care.

    Take care.
  13. 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....
  15. 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...
  16. 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...
  17. 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.
  19. 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.
  22. 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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