Benylsta Infusion

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/15/2012 10:50 PM (GMT -6)   
Well, tomorrow is supposed to be "D" day. I am to start taking Benylsta at 9am. I have a serious case of nerves that's for sure.

I joined a group on Facebook for folks who take it. I also called the manufacturing company that makes the drug. They helped answer questions that I had.

My infusion could possibly be cancelled. As I have mentioned before I have issues with warts. Well one month ago, my Dr did a chemo wrap on my thumb. Well I have lost a good portion of the nail. Fluid comes out from under what's left. I showed it to my PCP, and she had my Derm Dr look at it. Then she called my Rheumy. The Rheumy and PCP are worried about giving the drug if I have an infection.

Well the Derm Dr, didn't think it was infected. It is a bit red under the nail but no puss. So I have been instructed to soak it in vinegar water and then blow it dry with a hair dryer. They also gave me some antibiotics to drop under the nail.

The chemo wrap did nothing for the wart, but will most likely make it that I will no longer have a finger nail. I will be seeming Dr Gaspari at the University of Maryland Medical Center on Oct 31st. He not only is a Derm Dr but he specializes in immunology and skin allergies. He went to Orient somewhere and treated a man known as De De also known as (The Tree Man) the show was on discovery fit and health and TLC. I am hoping that he can help me.

Anyway, I need prayers or positive energy for tomorrow. I need to start this journey. I have been a nervous wreck about it, and postponing it won't be good.

Hugs,
Barbara

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/16/2012 7:36 AM (GMT -6)   
Ok, Barb, you've got my support!! Really hoping all goes seamlessly for you and you are safely able to get the Benylsta.

It's a bit before 9 now, and I'll be thinking of you continuously for the next 1.5 hours.

Hugs
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 10/16/2012 8:50 AM (GMT -6)   
Hoping Benlysta will be your miracle drug and you are able to take it!!! Big Big Big hugs to you.
Amy
Lupus Moderater


dialysis from lupus nephritis

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 10/16/2012 6:44 PM (GMT -6)   
Barbara,

Sending positive thoughts your way. Hope everything went well today!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 10/16/2012 9:36 PM (GMT -6)   
Hi Barbara,
 
      I have had good luck so far with Benlysta.  I am sending you positive, healing energy.  What I found helped during the infusion was to imagine all of those monoclonal antibodies going exactly to the sites of inflammation in my body.  It really seemed to help.
 
Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/16/2012 10:39 PM (GMT -6)   
Hey all, thanks for all the support. Well hubby and I had a very long day. We Got there at 9 and we didn't leave until 5 tonight.

I had a reaction to the drug and had to be given 75mg of Benadryl IV and 200mg of Solu medrol. We did manage to go ahead and finish the infusion. My next one will be on the 29th. I have to find someone to go with me, as I am not allowed to drive, or take a shuttle w/o a chaperone.

I feel like I've got the flu right now and I'm having body aches. I'm worried about the depression/suicidal thoughts side effect. Dr upped my cymblata to 60mg. Said she'd add Ativan if needed. Also, my hemoglobin is low again, so most likely will need a blood transfusion on Thursday or Friday.

Please keep the positive energy coming and prayers too.

Love to you all,
Barbara

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/16/2012 11:46 PM (GMT -6)   
Ouch. So sorry you had a drug reaction -- hopefully everything will subside tonight and you'll feel much better in the morning.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 10/18/2012 9:41 PM (GMT -6)   
Hi Barbara,
 
     Oh my goodness.  I am so sorry you had that kind of reaction.  Rest easy and take care of yourself.  I am sending you a great big hug.
 
Laura

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/20/2012 5:51 PM (GMT -6)   
Hi Barbara. I just read your post. I'm so sorry you had a reaction, but I hope the Benylsta ultimately does wonders for you! Love Ya, Donna

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/20/2012 11:19 PM (GMT -6)   
Thanks everyone for your prayers and well wishes. I really need them, I have to say I am not doing to well as of right now.

Ever since the infusion I have felt like I have been hit by a train. I am so tired and wiped out. My back is hurting me, as usual, my fatigue is through the roof.

I can't help but wonder if it's the new medication that is making me feel so bad. I asked hubby to rub some lotion on my back, and he said to me, "what's that lump on your back?" I asked what lump, well I couldn't see it in the mirror in the bathroom, he took a photo of it.

It looks like I have a lemon or lime under my skin in the middle of my back. I'm going to wait till morning and see how it looks then before freaking out and rushing to the ER. I spent all of yesterday in bed. All I know is I feel horrid, my next infusion is due on the 29th of Oct. Guess time will tell.

Hope you are all having as low of a pain night as possible. Thanks for all your support.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/21/2012 5:45 PM (GMT -6)   
I hope the lump goes away quickly. But please, if it's still there tomorrow get it checked out.
Joy
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! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/21/2012 8:41 PM (GMT -6)   
Sorry you have a lump - perhaps it's just fluid and will go away overnight.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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