What Are The POSITIVE Effects of Benlysta?

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.

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

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

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,

Thanks Lynnwood!!