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Forum Moderator

Date Joined Jun 2006
Total Posts : 1650
   Posted 3/1/2013 9:01 PM (GMT -6)   
Hi Everyone. I had the flu shot last fall and just to make things interesting, I now have influenza (the flu). Hubby insisted I go to ER last Wednesday because of a terrible cough I developed that day. ER ran EKG, chest x-ray and blood tests, then told us to wait in the waiting room. I was wearing a respirator mask which I brought from home, but as it turns out that was for the other patients' safety. After waiting  hours I decided it must not be serious so we left.
Today he took me to my PCP and the test for flu was positive. I'm within the 72 hour window of starting Tamiflu, so I have that cough pearls. Last Friday I had a Benlysta infusion with solumedrol added. I had pretty much decided that I was not going to have any further Benlysta infusions, but this cements it. Just as well cause my rheumy wanted me to stop anyway, but agreed to let me try it with solumedrol. Between the solumedrol, cellcept, and Benlysta, flu found an easy host. Love, Butterflake 

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/1/2013 9:20 PM (GMT -6)   
Take care and don't overdo it.
Sorry the Benlysta didn't help you.
I was hoping that the majority of people here could do well on it and see progress. It was my future hope that they had found something that could help me when things get worse for me which I hope I would never need (fingers crossed).
Hang in there and healing vibes sending your way.
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! :))

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 3/1/2013 10:08 PM (GMT -6)   
Hi Joy,
      That might explain why into a flare after my last Benlysta treatment and then got the cold from hell.  This was by far the worst month for me.  I went back on a low dose of Prenisone until I see the Rheumy next Friday.  Had another treatment today and as usual, I feel great.....partly due to the dose of Solumedrol coursing through my veins.  The infusion nurse said that some people have to up the dose of Benlysta if the dose they are currently on does not seem to be holding them.  I don't know how I feel about upping the dose.....for some of the very reasons that you give.  Hope you feel better soon.

Forum Moderator

Date Joined May 2005
Total Posts : 7720
   Posted 3/1/2013 11:59 PM (GMT -6)   
That sounds horrid, I am sorry you are feeling so poorly. Hoping things look up soonest!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 3/2/2013 11:51 PM (GMT -6)   
Donna I'm sorry that you are sick (((((hugs))))). I hope by now you are on the mend.

I'm sure you're disappointed with the Benylsta. I've stopped mine too, my body has never rebuilt up my B cells. Benylsta is meant to attack the B cells so I'm trying a drug for nothing.

Laura I hope that your Dr can get things figured ou one way or another. Maybe, you will just have a need for 5mgs of pred.

Wishing you the best and you always in my prayers.


Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 3/3/2013 10:52 AM (GMT -6)   
Hi Barbara,

Right now I am on 10 mg., which has really been helping. My mind is clear and the rest of the Lupus symptoms are being held at bay. I am questioning the Benlysta because it just does not hold me. I will be having labs next week, so it will be interesting to see what results I get. Like Joy, I got the cold from hell on this drug and I had not really been sick with a bad cold for about 4 years. So I am questioning what is really happening with my immune system. I will know more next week.


Forum Moderator

Date Joined Jun 2006
Total Posts : 1650
   Posted 3/3/2013 12:24 PM (GMT -6)   
Hi Everyone. Thank you for your well wishes! I have improved a tiny bit, but still feel awful. Hubby and I are counting the days 'til I'm no longer contagious. One day to go. Love, Butterflake
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