Benlysta - anyone on this?

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EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 11/19/2013 12:02 PM (GMT -6)   
Hi, I'm new to the forum and just been told (Insurance decision pending) that I'm going to be given Benlysta to begin treating my symptoms.

Brief history, seven plus years of problems. Began with a rash on my shin, small to larger red dots, some raised, some not. Went away after a couple of days. Progressed to joint and muscle pain and a gazillion other problems since. Have recently had large intestine removed because it had become useless. Have stomach inflammation as well as inflammation in every joint and muscle. Have right sided weakness and flare ups lasting from one day to a week or two, range from manageable (3/10 pain on a normal day) to intolerable (10/10 pain). ANA - A positive, Homogenous, Speckled, Titers are off the charts. Toe nails have turned blue, have restless legs, cold and hot patches (bad circulation?) and gastric problems, as well as eye and facial twitches, body cramps, especially in my back, trigger finger and on and on.

Previously been told they can't 'diagnose' me because the disease is in too many different areas so I had to 'wait'. Done waiting. Been too long now so I will try a treatment.

Wondered if anyone can tell me about their experiences using Benlysta.

Thanks.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 11/19/2013 10:19 PM (GMT -6)   
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


Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

JJ1226
New Member


Date Joined Nov 2013
Total Posts : 12
   Posted 11/20/2013 1:15 AM (GMT -6)   
Look all the way down the pg and you can see who is online in here. I've never been on Benlysta so I don't know much about it.

I wish you well!
JJ

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 11/20/2013 8:52 AM (GMT -6)   
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.
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.

!mimi!
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/30/2013 1:33 PM (GMT -6)   
Hi Sue, I'm new to the forum. (First post) I was diagnosed with SLE back in 2008. I started benlysta in January of 2013. I've had no side effects whatsoever. My prednisone has been lowered to 3mg a day. It took several months to see my inflammation levels start lowering. I came off my mobic. I still take plaquenil, methatrexate and a couple other meds for depression and migraines. summer seems to be my easier months. This fall has been very rough on me due to husband having two emergency surgeries and me not sleeping. My stress level has been thru the roof and I started flaring. I've never had so many days where everything hurt. Feet, shoulders, hips, hands. You name it. I go in for another treatment Monday and will also have blood work done. Unfortunately, my out of pocket insurance next year has tripled. I will not be able to continue with the benlysta. My last treatment will be dec 30th. The true test as to whether it was working will be about 6 weeks into the new year. I will keep you posted. It's definitely worth a try. I'm also currently starting to take fucoidan supplement. Google it when you get a chance. I'm a very active person and I'm getting frustrated because I'm not feeling like my normal self. I'm willing to try and see if it will work for me.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 12/1/2013 9:27 PM (GMT -6)   
 
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

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 12/11/2013 11:48 AM (GMT -6)   
Wish me luck guys, I start my Benlysta on Friday. The last two weeks I've been having so much more trouble sleeping, getting just a few hours a night - doesn't help when I have to work 9 hours a day and have a 45 minute commute each way. I'm wondering if it's because I'm secretly worried about the Benlysta as I kinda see it as my last best hope. I don't think I'm worried, but oftentimes I have what I call 'internal stress' when my brain is worried about something but my mind won't admit it. I am very tired and started stuttering sometimes, I think that's probably why. The hydro and oxy painkillers are no longer working, so I have to get some relief from the pain...just gotten over a ten day flare. Gotta go do the last of the Christmas shopping now - sneeking out from work early :o) - and hoping people keep a distance so I don't get sick or don't get bumped into. If only other people knew how we have to live our life... oh well, that's it for now. Onward and upward !
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.

Tgo
New Member


Date Joined Dec 2013
Total Posts : 9
   Posted 12/16/2013 9:04 PM (GMT -6)   
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?

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 12/17/2013 6:38 AM (GMT -6)   
Sorry..I'm in the hospital! Admitted by ambulance six nights ago. Have bowel obstruction. Missedmy first benlysta infusion appt. Very annoyed. Wd be interesting to hear how yours went. Fu nny when you're in the hospital and din't get flowers from work..you realise it's because you're always the one who sends glowers to people! It's been a rough few days..hoping the blockage breaks down and i don't have to have surgery. Going for a special xray shortly to find out. Hope everyone has a goood day. yeah
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.

Tgo
New Member


Date Joined Dec 2013
Total Posts : 9
   Posted 12/22/2013 2:25 PM (GMT -6)   
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!

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 12/22/2013 2:38 PM (GMT -6)   
Actually spent eight days in the hospital. Recovering at home now so ha ve to get my strength back before I start the treatment. Sorry you started with a flare..hopefully it is just stress that started it and you feel better soon.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/23/2013 12:06 AM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Nina in Ohio
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 12/30/2013 7:55 PM (GMT -6)   
Sue,
  I am new to the site, but I saw your story on a search engine concerning Benlysta.  First, how are you?  I see that you were recently hospitalized and pray you are doing well. 
 

I am 48 years old and was diagnosed at age 28 with SLE.  I’ve had a long journey with Lupus, including a pericardial effusion with tamponade, bilateral pleural effusions, AVN,  butterfly rash, blisters on my exposed skin,  Sjogrens syndrome, GERD, CRF  and Optic neuritis to name a few.  I was a military member ready to move to The Azores, then Desert Storm when I became too ill.  I tried every medication imaginable, to include Methotrexate, Salogen, etc. 

But, this isn’t about me; I am focusing this introduction on you.  Benlysta probably saved my life.  I have been on the infusion for about 19 months now and believe it is assisting me in living a productive life as possible.  I believe and feel this has been a turning point for me and I hope that you can have the same result. 


Quiet1
New Member


Date Joined Jan 2014
Total Posts : 4
   Posted 1/12/2014 12:45 AM (GMT -6)   
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!

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 8/1/2014 1:21 PM (GMT -6)   
Hi guys, I'm back on the forum. It's been a while I know. Thank you to EVERYONE who replied to my posts. Update: it took quite a while to get over the small bowel obstruction and I still have a lot of bowel related problems. Sometimes I just take fluids for two or three days to help the obstruction through and that seems to work. My weight is mostly up, which doesn't make sense because I don't overeat, don't eat fast food or fried food. I do like chocolate and champagne but that's usually just a reward or a pick-me-up from my wonderfully caring husband - came home and he had bought me flowers and gave me a beautiful card telling me how much he loved me (we're in our 50s and only been married 4 years). It gave me a good boost because at the tail end (I hope) of the second flare up in one month. Met with my regular doctor yesterday and he put me on an antidepressant, because the days of feeling like I just want to give up are increasing. You out there know what I'm talking about. Anyway, my inflammatory markers are all still sky high, even when I'm not having a flare. Now I'm having worsening hoarseness and a cough I've had for about two months that the prednisone didn't take away. So, he thinks it's time to go back to the rheumy doctor and see about trying the Benlysta. I guess it's paid for, and just been sitting there waiting on me (according to the Infusion Clinic) so I may as well try it now. Already paid up on my deductible so the rest of the year should be free. So lucky I'm still able to work from home when I flare. Going through a lot of changes at work - merging, being taken over etc. so I'm trying not to let the stress get to me. Daughter probably moving back in the area following her divorce with the two children so looks like they'll be staying with us for a few months turn - more stress, but I will enjoy the little ones, we don't get to see them much. So here's hoping the rheumy agrees to start over. I'll keep y'all posted (it's weird for me to say y'all... I'm from England!!!). I hope everyone has a peaceful weekend, and don't give up hope...."One Day At A Time"...tomorrow, it could be better, never forget that! Take care of yous! yeah
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 8/29/2014 1:05 PM (GMT -6)   
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.
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 8/29/2014 3:23 PM (GMT -6)   
Just thinking. Acid reflux or allergies? They can both cause the cough and shortness of breath. I am sorry for everything you are going through. Hope you get some answers soon.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies, asthma, GERD
Daily Meds: Plaquenil, Zyrtec, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim, Q-Var, Restasis, Albuterol
Daily Supplements: Calcium, B-100 Complex, Vitamin D, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Tylenal, Vicodin, Prednisone.

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 8/30/2014 10:30 PM (GMT -6)   
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. confused
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.
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