End of Benlysta

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oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/8/2013 6:40 PM (GMT -6)   
 
Hi Everyone,
 
       I saw the Rheumatologist today and we stopped the Benlysta treatments.  It really hasn't been working 100%, so we are back to square one.  I have exhausted all other options, so I am back on Prednisone and still taking the Plaquenil.  We had been so hopeful because I wasn't experiencing side effects and in the beginning it was almost like a miracle drug.  It just didn't last with me.  I have such a love/hate relationship with Prednisone, but it's the one drug that at a dose of 10-15 mg. works amazingly well for me.  I tolerate it, with the exception of bruising and some moodiness......but overall, it works.  I just never wanted to be a long time steroid user!!!!  So at least for me, the Benlysta journey comes to an end after being on it since last summer. 
 
Laura

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/8/2013 7:05 PM (GMT -6)   
Sorry it didn't work for you. :(
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/8/2013 9:18 PM (GMT -6)   
 
Hi Joy,
 
     Yep, me too.  I was pretty hopeful and really disappointed when I left the office today.  This journey can sometimes get so discouraging.
 
Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/9/2013 2:54 AM (GMT -6)   
Hey Laura,

Sorry that the Benylsta didn't turn out to being your wonder drug. I know it even feels worse because of the pred having to be added back. You are SO CORRECT WE have LOVE/HATE relationships with the stuff.

I like you am off the Benylsta train ride. I'm currently in the hospital and I'm not sure what my Drs are gonna do. I've tried everything like you and I'm not sure whats next.

Hang in there and know we all understand this drated disease, you'll be in my prayers, don't give up try to hang tough.

Hugs,
Barbara

Post Edited (Barbara Lee) : 3/9/2013 4:47:32 PM (GMT-7)


oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/9/2013 7:27 PM (GMT -6)   
 
Hi Barbara,
 
      I finally was able to wrap my brain around the place I am currently in.  What helped was starting my flowers from seeds in six packs this afternoon.  It helped to center me and relax me.  I did not sleep well last night....typical grinding of the gears that often happens.  Thank-you for your thoughts!!!   And you hang in there as well.
 
Laura

cecee
New Member


Date Joined Mar 2013
Total Posts : 3
   Posted 3/16/2013 3:25 AM (GMT -6)   
im suposed to be starting on benlysta soon.,.i hope all goes well bc ive been on prednisone ever since i was 13 and im now 21!!!!

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/16/2013 9:17 PM (GMT -6)   
 
 
Hi CeCi,
 
       I have been on Prednisone for so long and was really hopeful that the Benlysta would work.  The goal has always been to find an alternative that holds me, so I can get off the Prednisone.  Well, I am out of options.  I have tried everything else and either they caused horrible side effects or did not work.  I am back on 10 mg. of Prednisone every other day, which seems to be working ok....although by the evening of day two I don't feel as well.  I also take 200 mg of Plaquenil and the occassional Tylenol Arthritis for pain.  I do have some issues with the Prednisone, but overall my body tolerates it and it works.  So I guess I just go from there.  I hope the Benlysta works for you.  There have been a mix of people here on this site who have not had success and those that have.  At the infusion clinic where I was going, most folks were having success, with the exception of two of us.  I would love to know how things go for you.
 
Laura
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