started benlysta

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Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 12/29/2012 8:32 PM (GMT -6)   

I wanted to write some clever subject title, but benlysta sucked the clever right out of me. Regardless, the infusion was easy. I was given IV benedryl prior to benlysta and upon returning home I slept all afternoon. My side effects have been insomnia (no surprise), sore throat, nausea, and slight headache. All these are expected side effects. Hubby went grocery shopping today so I could avoid the crowds since, as you may recall, I easily contract all sorts of stuff. Anyway, things are going well. Love, Butterflake


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/29/2012 9:29 PM (GMT -6)   
Glad everything went ok - no adverse reactions. Hope you feel better shortly!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Hannahbrooke42809
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 12/30/2012 9:27 PM (GMT -6)   
I am on Benlysta as well. I go on the 3rd for my next infusion. The only bad side effects I have had are intense itching, jaw and chest pains, and worsening of my anxiety. Which a few of those are not good, but as long as it doesn't get any worse with the side effects I will stay on it. I am allergic to Plaquinel and my body just cannot handle anymore steroids and Methotrexate only made me worae and unable to function. I hope the Benlysta works well for you :-) Oh, I get terrible imsomnia from it as well. I guess as long as it works, its worth it!

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 12/31/2012 8:54 PM (GMT -6)   
Happy New Year!!!
 
      I just got back from visiting my parents in the southern end of this state and was excited that I could get back on the computer and check this website.  I will be going in for my 6th treatment this Friday.  So far, so good.  I have not had any Prednisone in 3 weeks, which is huge for me.  My hope is that the Benlysta is working.  I really do feel like I have been flare free and Lupus free for these past three weeks.  The only side effect I have from the Benlysta is insomnia, which to me is easily managed.  I know that the other 6 patients who are on Benlysta here have for the most part been having positive experiences with it.  I am so glad that others on this website are also undergoing treatment and willing to share their experiences.  It really gives me a sense of loving support and care.
 
Laura

Hannahbrooke42809
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 1/2/2013 8:22 AM (GMT -6)   
Do any of you ladies eperience the feeling of your Benlysta wearing off when you're close to being due for your next infusion? A couple of my friends, I call my Lupie Sisters, have the same feeling. We usually get more of the fatigue back and flare up. I am one who flares very easily and am just coming out of one today. Thank goodness I get my infusion tomorrow XD

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/2/2013 8:10 PM (GMT -6)   
Hi Hannahbrooke,

I do experience that feeling you are describing. I feel amazingly wonderful for the first three weeks and the three or four days before my treatment, I do notice more fatigue or joint pain. I am so glad that yuou asked the question because I thought that it might be in my head!!!! I usually flare easily like you do, which has always been frustrating for me. I get my treatment this Friday, so I should be on the upswing when school starts back on Monday.

Laura
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