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  1. Replies
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    I did Benlysta for about a year, I didn't work...

    I did Benlysta for about a year, I didn't work out for me but my biggest side effects were weight gain and I would be very sleepy for the next couple of days. Hope you do well on it.
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    Hi Julie, Just wanted to say I agree with Steve....

    Hi Julie, Just wanted to say I agree with Steve. You might be able to avoid some of the real bad side effects of Lupus by taking the meds this early in your diagnosis.I can't stress this enough.My...
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    Good luck with the hearing,I never had to go thru...

    Good luck with the hearing,I never had to go thru that so no advice here.
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    I get those too. Are you on Cellcept?

    I get those too. Are you on Cellcept?
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    Just curious, have you ever been diagnosed with...

    Just curious, have you ever been diagnosed with Raynauds?
  6. Thread: hot flashes...

    by Shanna
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    I get these really bad as well, I thought it was...

    I get these really bad as well, I thought it was the steroids (or coming off of them). Is this a normal symptom? I get them so bad my hair will be drenched and the sweat will be dropping g off of me!
  7. Hello..... I just finished with the cytoxan...

    Hello..... I just finished with the cytoxan treatment. I too have stage 4 nephritis. Honestly the steroids bothered me more than the chemo did. I did not lose any hair and it did not make me sick....
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    For just dry skin, which I have badly ...lol....I...

    For just dry skin, which I have badly ...lol....I have been using pure emu oil, a little goes a long way with that stuff. It's a little pricey but it's also beneficial in many other ways, just make...
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    Sorry for not replying sooner, I've been very...

    Sorry for not replying sooner, I've been very sick. Anyways, when I first started Cellcept it made me throw up and I just felt queasy a lot but after a few months I felt better, I don't know that I...
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    Benlysta Failure

    Just wanted to give you all some info on my experience with Benlysta. I had been getting the infusions for the last year almost, and my doctor and I thought I was doing better and my labs even...
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    Stage 4 Kidney Nephritis...

    Here's what I have been going through.
    I went to my local hospital after having pain in my chest and hard trouble breathing. They said I had fluid around the heart (pericardial effusion). Was...
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    I had that problem with plaquenal too,along with...

    I had that problem with plaquenal too,along with some others. My doc ended up putting me on Cellcept at that time. Good luck with that, hopefully you can figure it out and stay on it.
  13. I just had my first treatment yesterday, so I'll...

    I just had my first treatment yesterday, so I'll be interested in following your posts as well. I'll also be posting soon about my whole experience with this kidney nephritis dx. Looking forward to...
  14. I'm still in the hospital and it is scheduled to...

    I'm still in the hospital and it is scheduled to be done tomorrow afternoon. Up until today the cardiologist seemed certain it needed to be done and he made me feel confident. Today he almost seemed...
  15. hello my lupie friends, I have a question for you......

    Can anyone give personal advice on having pericardial effusion? I finally came and got admitted to hospital Thursday night because my bp was 181/101 and I just couldn't breathe, I thought I had some...
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    I have reduced my Cellcept and I don't think I...

    I have reduced my Cellcept and I don't think I had any problems, but for me it's so hard to tell what is what anymore LOL! I can never tell if the symptoms I'm having are from Lupus or from meds....
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    Your story sounds familiar to mine, I too lead a...

    Your story sounds familiar to mine, I too lead a healthy lifestyle,I also taught spin classes at the gym. Anyways, about the lesions.... I got those too real bad and I was freaking out...went to my...
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    I couldn't keep up, I had to cut way back. I...

    I couldn't keep up, I had to cut way back. I don't have an answer for you but I wanted to encourage you and let you know that I understand how hard it gets and that I think you must be a very strong...
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    Are you on prednisone? That always does it for me?

    Are you on prednisone? That always does it for me?
  20. Thread: Benlysta

    by Shanna
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    Well, If I can be of any help to anyone Please...

    Well, If I can be of any help to anyone Please ask away. All I can give you are answers and opinions based on my experiences. It has been a year come March that I've been getting Benlysta infusions....
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    I think you have to make sure you are seeing a...

    I think you have to make sure you are seeing a doc who really has a good understanding of what our symptoms are and what side effects we suffer with. I have been with my doc seven years, even before...
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    I lost probably 75percent of my hair. Now I have...

    I lost probably 75percent of my hair. Now I have been wearing those clip in hair extensions and they look great, nobody can even tell. I didn't get a bad rash on plaquenal but I got very suicidal....
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    Ask your doc if you could try cellcept,that's...

    Ask your doc if you could try cellcept,that's what I take cause I didn't do well on plaquenal either. The Crockett takes a little while to work,and it might make you feel sick at first but then you...
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    Hi, if this is lupus then maybe it's at an early...

    Hi, if this is lupus then maybe it's at an early stage and treatment can hopefully keep it from flaring into something nasty. I had joint pain in the beginning and was told it was RA, I hate meds so...
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    Lol.....oh, it's all such a catch 22 isn't it!...

    Lol.....oh, it's all such a catch 22 isn't it! Sometimes I find myself over thinking it :(
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