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Posted By : Klee54 - 12/10/2016 5:31 PM
Hello, I am new to this Forum and I'm VERY interested in what benefits Lupus patients are getting on Benlysta Infusions. My Rheumy has recently okay'd Benlysta for me since the Lupus is affecting the lining around my heart. Pericarditis. I understand from reading comments from on-line acquaintances, that they are usually sick for 3 to 5 days afterwards. Is it worth the benefits?
I've had SLE for over 30 years and as I get older, it is getting harder to bounce back to my status quo. I have Sjogrens, Raynauds that accompanies the SLE plus a host of other medical problems. The debilitating fatigue is a big problem.
Has anyone experienced gaining more energy from the infusions & if so how long did it take to notice a difference?
I've read that it is supposed help the Lupus patient have a better "Quality of Life" and I'm all for that.
I'd be very happy if anyone can offer me some feedback.
Thank-you in advance :-)

Posted By : Lynnwood - 12/10/2016 8:28 PM
We do have at least one member who has been on Benlysta for quite a while - hopefully she will be online soon and can help you with your questions.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Klee54 - 12/11/2016 3:00 PM
Thank-you very much for your response! I hope that she is back on-line soon too. wink

Posted By : Butterflake - 12/13/2016 10:22 PM
Welcome to our forum klee54. I know that there are forums just for Benlysta recipients, but yep I'm one of the Benlysta experimentees here. I take 2 different infusions each month and started them about the same time over 2 years ago. I had to take IgG infusions because my body doesn't make enough and it's needed to fight infection. My rheumy convinced me that Benlysta would help stop the progression of my SLE and possibly ease symptoms.

The first 6 months of infusions I was bedridden, exhausted, & in bad pain. Things improved very slowly regarding Benlysta. It might be slowing the progression of lupus, but it's hard for me to tell. I continue to contract various diseases, such as osteoporosis, osteoarthritis, stomach ulcer, and more, but my lupus markers are always in the expected range so that's good.

Currently after my Benlysta infusion I have severe fatigue and a pain level of 5-7 for up to two days so I spend most of those 2 days in bed. I never look forward to my Benlysta. Next is the most important thing I can tell you about my experience taking Benlysta. Once I was very concerned about memory loss I was having and I convinced my rheumy to stop my Benlysta for 2 months. By the end of one month I was in such pain that I asked it to be resumed and I haven't stopped since.

Another thing to consider is that 2 infusions each month wrecked my veins making the IV sticks almost impossible so I had a port surgically implanted near my collar bone I'm so glad I did! The ER will even use it and my veins have improved. Finally I will say that I actually look forward to my IVIG. I'm sick the day of infusion and sometimes the next day, but after that I usually feel good for at least several days. I never feel good after Benlysta. Maybe it's because the IVIG makes me feel so good that I don't notice a change. Oh, I thought I 'd mention that I am 59 y/o and also have Sjogren's, fibromyalgia, major depressive disorder, Raynauds, and others. I know I wrote lots (too much?) but if you need clarification feel free to ask anything or just text with your concerns. Thanks again for logging onto our forum. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Klee54 - 12/14/2016 4:04 PM
Thank-you for answering @Butterflake :-) I very much appreciate you taking the time to go into detail about your infusions. I am 62 y/o and have had SLE most of my life. Symptoms started in teen years & diagnosis in my early 20's.

You said the first 6mo.'s of your Benlysta Infusions that you were bed ridden. Was it because you were in a Flare? Perhaps some of these other diseases you mentioned are a result of years of medications used for treatment. I guess we can have a love/hate relationship with some of these meds! My stomach(pain) is a mess & the Colcrys has me running to the bathroom. ~ I pray the Benlysta has slowed any progress that SLE could have made in your body.

I have many things that you do: SLE, Sjogrens, Raynauds, Fibro, Osteoporosis, GERD, High Blood Pressure, Stage 1 Diastolic Disease and am currently dealing with Pericarditis & Pluerisy cry The heart issue is why my Rheumy prescribed Benlysta, because after a regimin of steroids at high doses, Colcrys & Meloxicam, it's still hanging on. The side-effects scare the gee-willickers out of me! My energy level is very low too. I thought Benlysta was supposed to help this? I did hear that it takes a few infusions to notice any difference. I did try Rituxin but did not notice any difference. No noticeable side-effects. The infusion was 6 hrs long! Two weeks later another, then they wait six months and do two more. I had the first two. Four per year.
It's wonderful that the surgeon's can put these ports in patients! My veins are hard to find - they hide when they see the needle coming! jk wink

I'm not familiar with the IVIG infusions but read it's used for CVID. I'm happy it makes you feel good yeah

Again, Thank-you for your answer!

Wishing you a Merry Christmas (if you celebrate) and a Blessed Healthier New Year!!!!

Love & Prayers, klee54

Posted By : Butterflake - 12/19/2016 11:24 PM
I'm back klee54! I forgot to tell you that prior to seeing this rheumy and felt drained every day. My dermatologist also has an autoimmune disorder and said she could get me in to see her rheumy. She said he is the doctor's doctor. He ran many blood tests, then confirmation tests, and diagnosed me with CVID.

I had seen my previous rheumy for years and really liked him, but he had a different approach to Benlysta. He started me on it and I had probably 4 infusion and they made me extremely weak. I was willing to continue the infusions, but he asked, why would I want to take a medication that made me feel awful? So I stopped and resumed my "normal" state of low energy and catching every illness that passed my way.

On a side note, I looked up Colcrys in the Physician's Desk Reference and found it's very easy to reach toxic levels and the amount given must be closely monitored because it can result in death. Side effects include diarrhea. Since I have diarrhea so often here is my advice: I take IMMODIUM as directed on the package, but also have prescription Lomotile. Depends and I have become such close friends that I thought I should introduce you. Also Always makes a large pad for urinary leakage, but they are good to wear when diarrhea has slowed, plus they're cheaper than Depends. These products give me a bit of security knowing they will absorb as I run to the bathroom. I sure hope your side effects have eased and you have a wonderful Christmas. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Klee54 - 12/22/2016 9:12 AM
Hi Butterflake!
Thank-you for answering smile As I understand it then, you don't do Benlysta infusions anymore.

I hope that your energy level has increased. It's horrible not having energy.

You're right about the Colcrys. I do take Immodium but not Lomotile which I've never heard of. The off brand pads do make me feel more secure!

I see you deal with multiple medical problems too. sad It seems one med helps the problem, but then it creates more problems with side-effects! It would be SO NICE to be healthy smile !!!!!

Thank-you for your well wishes and your Christmas Greeting!

Take care the best you can and again have a Merry Christmas smile Never Give Up! Love, Klee54

Posted By : Lynnwood - 12/22/2016 12:38 PM
Butterflake DOES still do Benlysta -- she was talking about the difference between how her original rheumy did them and how her current rheumy does them. I know it's a bit confusing.

Take care,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Klee54 - 12/22/2016 1:29 PM
Thank-you SO VERY MUCH for clarifying that for me Lynwood smile Have a very Happy Holiday!

Posted By : Butterflake - 12/22/2016 9:29 PM
Thanks Lynnwood!!
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

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