IV IG update and Benlysta

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Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 3/15/2014 9:14 AM (GMT -6)   
Hi Everyone. I'm over my latest terrible case of pneumonia and have had 2 IVIG infusions. I actually had 2 good days (just pain and moderate fatigue) last week and hubby & I went to the movies and saw Mr. Peabody. My little white mutt of 15 years (rest his soul) was named Mr. Peabody, but I digress...

I have another IVIG infusion Friday. The big news is my "super rheumy" also known as the professor said the latest studies show many lupies don't see results from Benlysta until 8 months or more. I told him Benlysta kept me in bed for 2 weeks after every infusion and he said that it's my decision, but he still wants me to take it. I've decided to buck up and get Benlysta infusions for 8 months. Whether I have to also get IVIG infusions depends on my IgG levels.

I read the thread about lupus "quiet" times so I hope and pray that quiet times are ahead. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/15/2014 4:06 PM (GMT -6)   
Good luck on the results.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

PattyLatty
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Date Joined Mar 2006
Total Posts : 2607
   Posted 3/15/2014 4:32 PM (GMT -6)   
Hopefully the infusions will quiet down your lupus! We can never give up hoping for the possible!
SLE, fibro, renauds, restless leg?

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/15/2014 6:09 PM (GMT -6)   
Hi Donna,

I took Benlysta for close to 7 months and it seemed to work in the beginning, but then it only held me for two weeks, sometimes three before my next treatment. I was off Prednisone at the time and the week or two before the next treatment were unbearable. I do hope you have better luck than I did. Let me know what happens. And I am so glad the pneumonia is behind you.

Laura

Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 3/16/2014 10:05 AM (GMT -6)   
Thank you for the replies ladies. Laura, I'm going to hope that since your Benlysta treatment started out good and then became awful and mine started off awful that ultimately mine will end up good! Hey, it makes sense to me smilewinkgrin Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/16/2014 10:07 AM (GMT -6)   
Hiya Donna :) I've been fighting with pneumonia too. It's becoming a trend for me every year at this time Feb/March. I'm glad you are on the mend from it, it's not fun.

It's so nice to get out and have a date with the hubby, I don't know about you but I tend to appreciate it even more now. All things really. That is one thing I have gained from being sick most of the time is that I'm ever more grateful for things now. :)

A lot of these autoimmune meds take a while it seems and kick us down before they pick us up. I'm finding that with plaquenil even though it's supposed to be one of the "kinder, gentler" medications. My stomach is very angry with me and plaquenil! But, I'm quite sure it beats being stuck in bed for two weeks at a time as you are. I feel for you and admire your decision to tough it out. I'm crossing my fingers and staying positive that it won't take long for you to see the benefits and move beyond the initial reaction your body is having to it.

I have to wonder with our immune systems being on overdrive if it doesn't have something to do with it rejecting or having adverse reactions to treatments at first. (Being home sick gives me time to think about things like this lol, I'm a "thinker").

I wonder if the reason I'm throwing up etc is that my liver wants nothing of this plaquenil and is trying to flush it out. That's how the liver works I think and it makes sense. And on the bright side, my liver IS working. Just not to my liking at the moment. ;)

I'm not familiar with how Benylista works (I will later read up on it) but could your little autoimmune soldiers be saying "what is this evil foreign substance?!" "be gone"! "attack!" ? And maybe that is why it is kicking your butt at the moment. If that's the case I do hope and pray along with you that your "soldiers" withdraw soon and let the medication help you.

Gentle hugs,
Joie

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 3/19/2014 12:49 PM (GMT -6)   
Hi Joie. I enjoyed your post. I too am grateful for those few good days. I often appreciate my hubby most when I'm sick and he helps with everything from housework to taking me to appointments. :-)

I don't think our reactions to medication is tied to our autoimmune soldiers viewing the meds as foreign. The side effects are the result of our organs and overall body's response to these evil substances. A common side effect of plaquenil is nausea and stomach cramps whether you are taking it for lupus or malaria. If the nausea gets too bad call your rheumy and ask him to call in anti-barf meds to your pharmacy.

I have a BS in medical technology (hospital lab) and studied some immunology. So last year I bought an immunology book and have learned lots about how lupies respond to foreign invaders. I also know what Benlysta does. I gotta go now, but if you (or anyone) is interested I'll post what this little foggy brain has read.

Take care of that pneumonia Sweetie. Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/19/2014 6:59 PM (GMT -6)   
I would absolutely be interested in hearing about it when you're up to it, thanks Donna. :)

I'm happy to report that I'm feeling not too shabby today. I hope you're doing alright. Hang in there! I will be sending all the positivity I can round up for you on Friday when you get your next infusion. Fingers, toes and eyes crossed it won't be as bad as the last one.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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