Benlysta round 2

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Hello everyone,

Had my second dose of Benlysta on Monday and not sure if these new side effects are lupus or Benlysta related but will continue with my scheduled third dose on 7/06 and Ill see if these side effects continue. Here are the side effects I have experiencing abdominal pain, twitching of my right arm and right middle finger, pain shooting down my left leg everytime I stand up from a sitting position, limbs feel heavy, and lots of pain from my flare up not sure if the med is making it worse. My rheumy offered to give me solu medrol iv but i refused because i took some last month plus i cant mentally deal with the side effects at this time. Oh i forgot to mention one more thing, I almost fell in the shower,because i couldnt put weight on my left leg without pain. now im so glad my mom got me a bath chair even when I argued with her about not needing one. Today i slept pretty much the whole day n took dilaudid, lyrica, motrin n flexaril to help with the pain. Pain is coming back n i have work tomorrow so time to load up on meds. I forgot to mention that with this new drug it has to be shipped to my rheumy office n that the Pharmacy has been giving myself n the office a hard time. Either they cant get the dosage right, dont have the med even though they say other wise one day, have to get authorization from the insurance each time even though i have the paper from my insurance approving me for 6 treatments. i have to call and be not so nice over the phone with them, that by the time im done im ready for a drink. So tomorrow im calling them to get the ball rolling for my next dose. the second dose was shipped to my house n my i almost didnt get it because my rheumy office said it would be a liability for them since they are not sure if it was handled n stored properly (oh yeah im a nurse)but since the nurse in their office authorized the pharmacy to send it to me (i dont blame the nurse she was just trying to help me n get my med on time, plus we have been fighting with this phamacy since before my first dose ,which it took them 3 weeks to get it to me) they went ahead and gave me my 2nd dose. Hugs to all of you, wishing all of you a pain free day. We are all connected through this illness that crosses all barriers and shows no mercy to us,but we all have hope and a place here to come and find support, understanding and friendship. slim
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  1. mumsy613's Avatar
    With everything else you deal with, thanks so much for your posts on Benlysta. Hope this is a whiz-bang med for you. I am curious what your lupus involves and what you hope this will help. Best wishes. I'll keep looking in to see how you are doing!
  2. slim's Avatar
    My lupus was pretty much under control, I would have a flare up about twice a year, get iv solu medrol and continue on. Now i get flare ups every 2-3 months requireing hspt. stay iv steriods,and imcurrently having a flare now that i cant seem to shake, had 2 disks removed from my neck that was compressing on my spinal cord and the neurosurgeon thinks the lupus ate away at the disk causing it to turn to mush, when my flare is at its worst i cant walk without a lot off pain, now its to the point i cant put weight on my left foot, almost fell in the shower, now i use a bathchair. My rheumy says as with some of his patients the disease gets worst as time goes by.I know benlysta wont cure me i just want to have fewer flares so i can exhale. Its been flare after flare, lots of iv steroids beside my daily dose of steroid n hspt.stays, er visits. I need a break. thanks for the wishes and i hope you are well n in no pain. how is lupus treating u?
    ill keep posting round three is on wednesday.

  3. thepaynes's Avatar
    wow slim u sound a bit like sucks not knowing if it the med lupus or a secondary illness causing ur pain. i go thru that guessing game alot. but please keep up with ur benlysta updates. i was going to take it but am too scared. today was real bad for me. yesterday was hubbys bday n i was running around like a chicken with my head cut off stressed was real nice tho. i couldnt use my hands open my pill bottles lift my arms or feed myself very well. it was baaad. i thank God for the help of my hubby tho. anyhow i would have needed a central line port n i dont heal too well. i have cancer in my family and an abnormal pap. so i worry cause it increases the risk of cancer but doesnt cause it tho. but still... anyhowim sorry u had such a prob with the pharmacy. they can be annoying. n cudos for u for brining up a bright kid.i sincerely hope it works for u and that u get better. im up to 60mg pred till my flar goes down hopefully ill get perc to the way im berniece. i wish u the best
  4. lhuntd's Avatar
    Hi Slim, I noticed your last blog was in June of 2011. How are things going with you now? I am getting my first infusion tomorrow and just want to know how things go.