Benlysta - anyone on this?

I was diagnosed with SLE in 1997 and have been on Benylsta for around 27 mos. It has been a true blessing in my life. The infusions take several hours, they can come with a fair share of issues/side effects like rash, shortness of breath, throat closure to name a few. If you are one who has issues with allergic reactions you could expect this, but it doesn't last long and the infusion tech will learn how to adjust you're pre-infusion medication to limit allergic reactions. They give you a bag of saline, Tylenol and then put steroids and benedryl into the IV to combat reactions.

It does take a couple of months to get the full effect and start feeling the differences Benlysta can offer. You didn't mention what other meds you are currently on to suppress your lupus? Typically they don't start out with the big guns so I am just curious as the meds you are on will work with the Benlysta to suppress your immune system. I've not known Benlysta to work on its own, but I could be wrong.

Hope you get the answers you are looking for and find some relief.

Hugs

Melissa, thank you for the information, it helps a lot! I have been on a lot of different medication over the years, including Enbrel, Meloxicam, Celebrex, Methotrexate, Prednisone, Colchicine, Plaqueneil, (not sure of all spellings!) and a number of others. The problem is they can't put a 'name' on the disease I have. My ANA is positive with patterns, even when I'm not having a flare up. They've have told me Wegeners, Lou Gerigs, SLE, Lupus, Giant Cell Arteritis, Ankylosing Spondylitis, Psoriatic Arthritis, Sjogerns, Fibromyalgia (confirmed), and a number of other diagnoses but after months of treatment for any and all of these, I'm no better. I am back to being on nothing but painkillers now, but even they don't really help much. I also take calcium +D, potassium, fiber, fluid pill, B1 B6 , B12, and sleeping pills.

My new Rheumy is good and I really like him - he's about the 6th one I've been too because the others (including two at the Mayo clinic) just shake their heads, says they don't know and send me a huge bill. One even told me "if it was anything serious, you'd be dead by now"! The new rheumy has gone through ALL my previous blood tests and medical reports and concluded that it definitely is not an arthritic problem (which I had already). Even though all my joints get swollen, my muscles are terribly painful, and I get cramps all over my body, eye problems, twitching, sleep problems, severe fatigue etc. Sometimes, I just can't walk at all (it's like I'm too heavy to stand up!). He said he thinks this comes under the Lupus umbrella. He said that's how we have to treat it, as we may never know what I have. I agreed, because not knowing is killing me, and I am fed up of 'hurry up and wait' which I've had to do for years now. I am ok now with not knowing what I have, I just want to get some semblance of a life back. I still work full time, which is a big struggle, but have to do it for financial reasons. I am fortunate that my boss lets me work from home sometimes but who knows how long that will last. I have to use a wheelchair sometimes at weekends when we go out to the store and that is embarrassing, humiliating and just downright NOT FAIR!

I am ready for the 'big guns' as you call them. I have read that the Benlysta is usually given in conjunction with another Lupus drug but my Rhemy says we need to go in heavy and try and knock this on the head.

Thanks for sharing the info, I hope this is the start of a good thing for me, I'm ready.

 

I tried Benlysta for about 8 months.  It worked very well at first, especially when I was getting the IV infusions every two weeks.  I had no side effects and was tolerating the procedure very well.  Even was able to lower the Prednisone and get off of it, which was a blessing.  I took Plaquenil the entire time I was going through treatment.  I really thought this would be my miracle drug.  After 6 months of treatment (monthly infusions now), the treatments were not working as well.  I had relief for the first two weeks and after that, my Lupus symptoms worsened.  My Rheumatologist finally decided that it wasn't worth the cost if the medication wasn't holding me.  I am currently back on Prednisone, which has always worked the best for me, along with a low dose of Plaquenil.   Good-luck with your treatment.  I hope that you have better luck than I did.

Laura

Hello,
I'm about to have my first Benlysta infusion this week. My major question that I can't find an answer too is how do I take my other medicines, specifically my methotrexate shot. Right now, I take my metho shot on Wednesday nights, and am a hot chemo mess for at least two days, if not four. Any tips?

Hi sue,
Did you ever get your first treatment? I had mine two days ago, and while I'm better than yesterday it triggered a small flare. At least I hope it's small!

Sue:

Glad to hear that you're home and recovering. I'm sorry that you weren't able to get your infusion of Benylsta but you'll get it soon enough. Make sure you're feeling well before doing it.

I tried this drug too, after 8 treatments we gave up, at first I thought it was helping, but I still couldn't cut back on my steroids. Plus I always would have an allergic reaction when getting it and would end up needing 100-150mgs of IV benadryl to get thru the infusions.

Since being off, I've learned I have T-cell LGL Leukemia in addition to all of my other stuff. So for me I'm just doing chemo and hoping for the best. They treat my symptoms and I'm holding my own I guess. NOT at the moment but usually I do.

I hope that the infusions make a world of difference for you and that you're feeling a lot better before you know it.

Hugs,
Barbara

Hello EnglishSue. I have been getting Benlysta infusions for about 7 months. I feel like they have helped me, however I am currently having some chest pain and lower back/hip pain that I am wondering if it's related to my lupus. My Dr has me take 2 extra strength Tylenol right before my infusions and they give me An IV dose of Benadryl before e infusion. This is to assist with having headaches or allergic reactions. It works well for me. I tend to have a dull headache for a day or so but nothing I can't handle. I was tired after the first one but kI think part of that was from being worked up about having the first one. Now I have my infusion and go about my normal days activities. After 3 months when my blood work was checked my inflammation level had dropped dramatically. I am going to see a Pulmonologist regarding the chest pain next week. My Rhuemey said that the Benlysta doesn't usually help with organ issues from lupus. It's more for joints/skin etc. My back issues have been going on for about a week so haven't discussed that with my Dr yet, wondering if it's related to e chest pain and it is affecting my muscles. Time will tell. Hope that you are feeling better and have finally gotten your first infusion and all goes well!

So, I've been on short term disability from work for three weeks now. The cough I complained about that started in about June progressed into breathing problems, or at least trying to get my breath. Had two ER visits in one week, both with no diagnosis, other than 'shortness of breath'. I know some nurses are great but I got so mad at one when she asked me 'what seems to be the problem' and I'm there in a wheelchair gasping for breath! At the moment, I can't walk more than 20 yards or so without getting out of breath and feeling weak and dizzy. My voice gets either very hoarse or I just can't get the words out. Seen an ENT specialist and speech pathologist, who saw me at my worst. Both said vocal cords are ok, just a little thin on one side but that shouldn't cause my symptoms. Referred me to voicebox specialist and back to rheumy doc. Very frustrated and very tired... probably from the lack of oxygen. They said it's a breathing problem that's causing me having problems speaking. Had lungs checked out, and brain MRI, both ok. Going to see primary are doc now to see what he has to say. Sometimes VERY hard to keep on going, when there is one obstacle after another in front of you.

Thanks Fran. So I had testing with the speech pathologist. Looks like vocal cords are thin but ok. However had major problems talking to her and breathlessness causing weakness over. Ended up in wheelchair. Also saw ENT doc there
They referred me back to rheumatologist and voice box doc. However speech pathologist said she thought maybe I should see a neurologist again because of all my other symptoms. Saw primary doc yesterday and couldn't talk at all...same today. He did blood test for myasthenia gravis. Had not heard of it before but after reading up..All my symptoms fit. Not a nice disease, no cure, but kinda hoping it comes back positive so they can finally put a name to it. My husband is enjoying the no talking bit..by the way! Should find out more next week.