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Christina F
New Member

Date Joined Apr 2012
Total Posts : 1
   Posted 4/10/2012 10:54 AM (GMT -6)   
Hi all,
I'm 24 years old, and have had Lupus (SLE) since I was 10. I have been on different medications in my 14 year battle with this disease, and have tolerated all of them fairly well, but we are looking for something that will help with my symptoms more than my numbers. My biggest complaint is pain on the left side of my chest while breathing, trouble breathing, and frequently feeling tired. I have just started the new infusion medication Benlysta. The first three infusions are to be administered 2 weeks apart. I tolerated the first one very well. I had my second infusion two weeks ago, and began to have tightness in my chest and trouble breathing. My doctors stopped the infusion right away, and I am headed back tomorrow to discuss the option of trying the infusion again. I was told that generally when there is a reaction to a medication there is itching (hives) and difficulty breathing involved.

Is there anyone who is currently on this medication or has tried this medication and has any advice? Had the same reaction to the meds as myself? I'm really hoping this was a one time reaction, and tomorrows infusion will go off without a hitch. I really would like this medication to work. I have heard that it works well for those who can tolerate it.

Thanks for your time!

New Member

Date Joined Jul 2012
Total Posts : 1
   Posted 7/21/2012 4:59 AM (GMT -6)   
Hello Christina!
I myself have Lupus SLE and just had my 3rd infusion this past Monday. I have had no problems physically. However…i am having a horrible time with depression after this infussion! Before having a stroke and being diagnosed 3 years ago I was a school counselor and counseled those with depression but I cant seem to shake my own. I realize that a lot has to do being alone probably 90% of the time. But being divorced and having split custody with the children there is not much I can do about that. The benlysta treatments are helping me physically so much that I don't want to stop but I just cant seem to see where physically feeling better is going to help me if I am severelly depressed. I was advised of this side effect before the treatments but had really never dealt with depression so I guess I never thought it would affect me. Do you seem to be getting depressed? Just wondering how others are handeling this situation? I pray your next infusion goes well and you don't have any side effects!
prayers & hits!

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 7/21/2012 9:10 PM (GMT -6)   
Hi Christina and Jacquelynn,

I just had my first Benlysta treatment a week ago. I felt very tired after treatment; a symptom I attributed to the Solu-Medrol they gave me prior to administering the infustion. Since then, I have felt great physically. I have more energy and am experiencing a significant lessening in physical pain. The second infusion is on July 30th. The nurse did say that some people have a harder time with the second one. It might even bring out some of your typical flare or Lupus symptoms, since the second treatment really tests how your body responds to the monoclonal anitbodies. What they look for in the first treatment is a reaction to the constituents that make up Benlysta, so if you react to it, you'll get itching, etc (signs of an allergic response). I am staying positive and visualizing this mediction working for me. I read a lot about this medication and depression was something that was a possibility. So far, I haven't noticed any that, although I am a little more short with my husband!!!!

My hope is that we can all stay in touch while we go through this process. I am excited and a little scared since it is so new and has the potential to cause some real problems. I will keep that both of you in my thoughts.

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