Benlysta Bummer

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Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 12/1/2012 9:11 PM (GMT -6)   
Hey Everyone,

about two weeks ago I had been off the Prednisone for 6 weeks. I had been feeling okay and had gotten a boost from Solu-Medrol when I went in for the last Benlysta treatment. Everything started going downhill after that. I began to hurt so much, even in places that I had never had joint pain before. I felt like one ginormous toothache. I was taking Tylenol Arthritis, which barely helped and Tylenol 3 at night to get to sleep. I can't take any of the NSAIDS, since they wreck my gut. But I was still trying to tough it out until this last week. Last week-end nailed me to the wall. I took Monday off from work, which might explain my brain fog on Tuesday....I kept thinking it was Monday. Each day I came home from work and curled up on the couch wishing that I had my pre-Lupus body back. I was getting more and more depressed as the week went on....more pain, joint stiffness, fevers and that old fatigue. I did not want to live like this! I called my Rheumy Thursday night and she got back to me mid-morning on Friday (I had stayed home from work again, because I couldn't even move from the bed). To make a long story short, she put me back on 10 mg. of Prednisone and wants me to continue at that dose until I see her next Friday. By last evening my fever was down and the pain and stiffness had started to ebb. I feel better today....not 100% (but when do I ever :). But I find myself feeling so defeated. I really was hoping that Benlysta would let me come off the Prednisone!!! My Rheumy reminded me that my body loves Prednisone, so I am seeing a life where I will always be on a low dose....not what I wanted, since I am already dealing with bone loss. I feel so frustrated right now. On a positive note, I feel better both physically and emotionally....which is huge, since two days ago I was ready to crawl into a hole in the woods behind the house and let the mountain lions get me (not really, but I kinda felt that way). Thanks just for letting me vent.


Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 12/1/2012 10:35 PM (GMT -6)   
(((((hugs))))) Laura:

I'm sorry you're having to go back on the dreaded pred. I know that I will never get off the stuff, I have been taking either prednisone or medrol since June 1, 2001. I have NEVER missed a day, even when I was in the ICU on a vent they gave me IV steroids.

It sounds like the prednisone helped tho and that's something to be thankful for. I like you can not take NSIDS and I have terrible bone loss. I get yearly IV infusions of reclast to help strengthen my bones. Maybe you could suggest this to your Rheumy to help you some. I'm due for my infusion but my vitamin D levels are still way way to low to get the infusion.

I so far feel like the Benylsta isn't doing the helpful things it should. However, I'm getting the not so helpful things, like, I am irritable, depressed, anxious, have insomnia, and my pain is still really bad. I'm taking the equivalent of 25mg of prednisone daily and I think I'm gonna have to add my injectable methotrexate back in. I don't see my Rheumy until the 19th but I see my PCM on Monday, I'm hoping she'll give me a steroid shot in my left shoulder. I can barely move my arm.

I know things seemed to be going so well for you with the Benylsta, maybe you can attempt to cut back on the steroids at a later date. Don't give up, I'll keep you in my prayers and come vent anytime you want.

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