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Benlysta Redux

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Posted 11/8/2012 2:44 AM (GMT 0)
Hey everyone,

Just had my sixth Benlysta treatment yesterday and I wanted to share with you what the outcome was. I went into a Prednisone slump six days ago. My body was really reacting to the lack of Prednisone (I have been Prednisone free for over two weeks). I wasn't feeling 100% when I went in for the treatment, and even when I went home I was sluggish and in pain. When I woke up this morning the pain and fuzzy feelings I was experiencing was gone. I had energy and felt really good. Working with my students was a piece of cake!!! I see the Rheumy next week and of course, I have lots of questions. The one thing I am really curious about is that I get a super red flush across my nose and cheeks for a day or two after my treatment, completely reminiscent of what happens when I get a Lupus flare....very strange. I wonder if that is something other people have experienced with Benlysta. Knock on wood that my blood counts hold!!

Laura
Posted 11/9/2012 4:01 PM (GMT 0)
Hi Laura. I appreciate your updates 'cause I'll start treatment as soon as I get insurance approval. I'm so happy your treatments are going well. Love, Butterflake aka Donna
Posted 11/9/2012 10:14 PM (GMT 0)
Hey Laura,

Sounds like things are going well for you with the Benylsta. I have had two doses and my third is due next Friday the 16th. I have to say its been a week since my last dose and I have been miserable this week.

Don't know if I did to much this week or what. I'm still having issues with reactions when taking it. Last Friday I had the itching, but when I got home I noticed I had some chest pain and hubby said my breathing sounded funny. Of course I have breathing issues anyway, so this whole week I've been wiped out, I never cancel appointments with my Drs and I never made any of them this week. I called and left a message for my Rheumy but he has up to 3 days to call me back. With it being a Federal holiday on Monday I'm not expecting to hear from him before Tuesday at the earliest.

I've yet to even begin to cut back my steroids, I just don't know what to think, I'm ready to throw in the towel. Just crawl into my bed pull the covers up and wait to die. I'm just SO sick and tired of being sick and tired.

Sorry about the vent. I hope that you continue to do well with the Benylsta. Keep posting it gives me some speck of hope, I just can't think of how I'm going to over come it all. Hope you have a good weekend.

Hugs,
Barbara
Posted 11/10/2012 2:28 AM (GMT 0)
Hey Barbara,

Please don't throw in the towel. I have been where you are, feeling frustrated and angry at being dealt the Lupus card. I had times when other treatments were worst then having the disease. I managed to get through those times with a combination of support from friends and co-workers and screaming my head off when I needed to. This dance with Benlysta is an interesting experience and I do take it month by month now. Sometimes I am so cynical that I just wait for the other shoe to fall. I found out today that my Rheumy had to move my appointment up to Dec. 7th. That made me mad, because I have a zillion questions to ask her. I took in a big deep breath and told myself that there are things out of my control. Thankfully, I am feeling well and I am scheduled for labs next week. I feel for where you are and what you are going through. This is what is wonderful about this site. It makes me feel not so alone and compassionate for people that are suffering so much more than me. My heart goes out to you and with it comes an enormous hug!!!

Donna-Hang in there while you wait for the insurance approval!!! I am so glad we are all able to let each other know how this journey is going.....a day at a time and a breath at a time. I look forward to hearing about your experience with the medication.

Love and Hugs!!
Laura
Posted 11/18/2012 3:49 AM (GMT 0)
Hi my name is Heather and Im not doing so great on Cellcept plaq and pred... please let me know how you all are doing on Benlysta. I might look into it next Thanks and it was nice to read Im not the only one that feels like throwing in the towel.
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