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Benlysta infusion #1
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lupylisa44 posted:
I got my first benlysta infusion yesterday! After reading so many posts on several websites, I was scared to go through witrh it. The side effects sounded terrible! But, I am happy to report that, so far. things are looking good. aside from being a little tired, I haven''t had any side effects at all!!

Lupylisa
With love, with patience and with faith, we'll make our way.
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bjjazzy responded:
hi . lupilisa, hope your infusin went well. My doctors suspect me of Lupus , this is the 3rd time i'm being checked with bloodwork, I saw a rhumy years ago, it went back n forth, meanwhile my bodily symptoms have gotten worse over the years, but they can't seem to figure it out. what is the infusion supposed to take care of, never heard of one. is it like a blood transfusin or marrow fusion? today I was checked for Lupus, my liver, blood count , and for diabetes, both parents have diabetes and 2 of my family including me has hypothyroidism. my skin is still getting sores, bumps and nose sores. I get weak, and dizzy a lot. my bones and my fibromyalgia kills me everyday. I keep hoping and praying I don't have these 2 horrible diseases but I know there is something wrong and my dr's too , but they never can figure things out, yet I keep ending up in the ER with reactions to every type of pill or shot they give me. I was offered a tetanus shot, but I chickened out for fear that too could throw me int anaphylactic shock again...I wish they would figure all this stuff out.
 
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lupylisa44 replied to bjjazzy's response:
http://www.benlysta.com/about/index.html
With love, with patience and with faith, we'll make our way.
 
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nancyj95 responded:
So glad to hear you have had no major problems with the infusion. I do wish I could take some of these new drugs, but with autoimmune hepatitis I can't do anything radical. So I am stuck with steroids every day, sulfasalazine, cell cept, neurontin, and bunches of others. The steroids cause so many other problems that it does get depressing, especially with the weight gain and sleep problems! Hope all continues to work out for you. I always look forward to,reading,your posts even if I don't post often myself.
 
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NicoleMolina replied to bjjazzy's response:
Hi bjjazzy, well just know you are not the only one going thru the docs not so sure what is going on. I am seeing two and I hate to say it but they are both scratching their heads. Getting all the symptoms including mild to sever chest pain, which I don't see too many people complaining about. I have been dealing with this for about 4 yrs. and no one has a clue. Had my gallbladder removed, had a heart cath ablation done, had complete thyroid removal due to cancer. Can't stand being out in the AZ sun drives my rashes crazy. joint pain, swelling...the list goes on and on. But I am having an MRI done on Monday of my head and neck. Constant pain there. Then I get the blood results back on tuesday when I see the doc. I am always being told to hang in there, but some times.....But when I think of my best friend that died 2 weeks ago of lupus, I know I can hang in there. SO HANG IN THERE!! lol...
 
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ssh49tn replied to NicoleMolina's response:
Nicole, Sorry you've gone through so much, but I fully understand. I have mild chest pains once in a while, right in the heart area, too. And, although I live in Tennessee, the sun drives my rashes crazy too. My dr said it's sun poisoning, & put me back on prednisone for a month. That's the only thing that keeps me from itching. A positive attitude is a great asset, but can be hard to maintain. It took my drs over a year to finally diagnose me with lupus, so I was really getting frustrated. God bless you!
 
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seagreen26 responded:
Benlysta is an amazing drug. It gave me my life back. I have been on it over a year. If you do have any problems or set backs try to stick it out.....it took about 4 months and now I can't live without it.
 
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lupylisa44 replied to seagreen26's response:
Everyone is different. I know of some other people who, like you, think that Benlysta is the best thing ever while others have not had such good luck with the treatment. So far I have not noticed much difference in how I feel but I have only had the first 3 loading doses.

Lupylisa
With love, with patience and with faith, we'll make our way.


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