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Ah, Benlysta

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Posted 12/8/2012 2:16 AM (GMT 0)
Hey Everyone,

I saw the Rheumatologist today and we started to taper back the Prednisone. I drop to 5mg tomorrow, stay there for five days, then go to 2.5mg and stay there for five days and then back to zero. Our hope is that I can stay off of it (so far that has not been the case), but we may have to find the lowest dose that I can be maintained on and stay there, maybe for a while. As she said, my body responds extremely well to this drug and it has been a challenge weaning me off of it. My options are limited, since I cannot take N-SAIDS. And we have already tried all of the other possibilities with with bad side effects. Benlysta is kind of it for now. I had another treatment today and I do feel good....but it could also be the 60mg of Solu-Medrol coursing through my veins. I am learning to keep perspective and to be patient with this process. It's not always easy!!!! And our cold, wet weather of late doesn't help the other issues that I am dealing with-osteoarthritis and degenerative disc disease.

Laura
Posted 12/9/2012 2:22 AM (GMT 0)
Laura, I sure hope you'll be able to back down on the steroids. I know my body responds really well to the stuff too.

I hope that the Benylsta will work for you. I know this coming Friday the 14th I'll get my 4th dose of the stuff. I still haven't been able to back off on my steroids yet. I'm guessing that we may have to add back the injectable MTX in addition to the Benylsta.

I know the Benylsta is affecting me mood wise, I've NEVER had anxiety issues and now I'm on Ativan to get through some of my days.

Of course, this waiting for the results regarding a potential genetic disorder is weighing heavy on my mind. I'm so torn, part of me wants it to be "YES" this is what we've been looking for, and part of me is afraid. I worry about my family and how they will deal with it, it's just so so overwhelming at times.

Sorry Laura didn't mean to hijack your thread. I hope you can handle the decrease in the pred. I hope the Benylsta continues to help you.

Hugs,
Barbara
Posted 12/9/2012 3:10 AM (GMT 0)
Hi Barbara,

This living with Lupus is certainly a journey and I appreciate how so many of us are dealing with many of the same issues. I find that I get overly concerned about my family as well. Each time something new comes around, whether it's a symptom or new medication, I get very sensitive about why my husband and my friends are going through. And it does get overwhelming at times. That is why it is so wonderful to have a place like this to share, vent, cry and question. It means that none of us are alone in this. I am sending you a real great big hug this evening.

Laura
Posted 12/20/2012 10:32 PM (GMT 0)
Hi Laura & Barbara. I just wanted to let you know that I will have my first Benlysta infusion on Dec 28. I thinking only good thoughts! Love, Donna 
Posted 12/22/2012 12:46 AM (GMT 0)
Hi Donna,

I am wishing you the best with the treatment. I will think good thoughts for you that day. My next treatment is set for January 7th.

Many hugs!!
Laura
Posted 12/23/2012 1:25 AM (GMT 0)
Hey Donna:

Will be thinking about you on the 28th. I too am having my 4th infusion that day. I saw my Rheumy last week, it's looking like I may end up taking both the Benylsta and injectable methotrexate. Oh joy, I'm just fed up with it all.

Still waiting for my genetic testing to know where that's headed. My thumbs are sure sore, they bleed all the time now. I just want to get on with it you know!

I hope you have a good Christmas and I'll keep you in my prayers that your infusion goes well, and that Benylsta is your miracle drug.

Hugs,
Barbara
Posted 12/24/2012 7:09 AM (GMT 0)
Hey Laura I was wondering how you are doing? How is the tapering going with the steroids? I sincerely hope that you can get off the steroids and the Benylsta is all that you'll need.

I'll be thinking of you on the 7th. As you can tell I'm still having insomina issues from the Benylsta, as well as a lot of other issues from the drug. I feel worse, I'm thinking the MTX was doing more than I knew.

My Rheumy mentioned last week I may need to take both the Benylsta and MTX, plus the steroids and plaquenil. I'm getting really frustrated as my wart issues are getting worse and I'm having to wait on genetic testing before I'll know what I will have to do this coming New Year.

I hope you have a great Christmas, I'm really not into it too much this year. I just am a grouch LOL, it's the Benylsta I'm not enjoying life to much lately. Keep us posted on how you are doing.

Hugs,
Barbara

Post Edited (Barbara Lee) : 12/24/2012 4:21:04 PM (GMT-7)

Posted 12/24/2012 5:11 PM (GMT 0)
Hi Barbara & Laura. Rheumy says I'll stay on my 1500mg cellcept and 5mg pred until we see how the benlysta does. That's fine with me cause on 5mg pred my moon face and buffalo hump are hardly visable. I also do ok with cellcept.

Barbara aka Grouch :) you have every right to be grouchy with all you've been through. Keep those anti-d's going. I know I will! Love ya, Donna

Posted 12/24/2012 5:29 PM (GMT 0)
Grouch or Grinch?
Posted 12/24/2012 11:32 PM (GMT 0)
LOL Lynn it's a positive Grouch, my family have been walking on egg shells here in our home. I really dislike how the Benylsta makes my mood so bad.

Last night I started to feel a bit unwell, at 4:30 this morning Grady awakens me by standing on my chest looking down at me. This is one way he gets me to get up and feed him, anyway, I felt terrible. Got up and took my temp and it's 101.5. I have had body aches, headache, sore throat all day long I slept until 4pm today. Hubby is currently making me some fried mush in butter, I figure if I'm gonna be sick on Christmas, then I should have something unhealthy for dinner.

I hope everyone here on the lupus forum has a Very Merry Christmas and a Healthy and Happy New Year.

Love,
Barbara
Posted 12/25/2012 12:40 AM (GMT 0)
Feel better, Barbara. I pray I don't have to get on something that gets me that grouchy and ill.
I'm already feeling like Oscar most days.
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