The phases of lupus - thank goodness there are some!

Phase [feyz] - a stage in a process of change or development. 

Oh yeah. That pretty much describes it. At three years of age, Deirdre has mastered the art of change and development. And as far as "phases" go, we've seen our fair share of them since her birthday last October. She is constantly growing - emotionally, mentally, and physically - and tell you the truth, sometimes, it's hard to keep up.

Of course, I love my little lady bug. She's my favorite first baby ever, and she's perfect in every way. It's just that I wish a few of her phases could have been shorter rather than longer. 

I don't think I'm jinxing myself when I say that we're successfully over the 3 to 3 1/2 year old Independent phase, and we've recently conquered the Resistance to the Afternoon Nap phase. Notice I'm not so naive as to believe there won't be a 3 1/2 to 4 year independent phase, or a Reluctance to Nap phase ...but since she's a whole month shy of 3 and 1/2, and she's currently napping like a champ...I'm going to celebrate my little victories as long as I can. 

And there have been so many of them. In fact, I was at lunch with some girlfriends last month, and I was seeking advice on quelling the 5-10 minute tantrum Deirdre was throwing at nap time. Like good friends, they replied, "Five to ten minutes? You're so lucky. Our kids go on for 30 minutes." Nice, right? 

Of course, during that same conversation, one of my friends asked how Deirdre was at bedtime, and I naively replied, "She's fabulous. Why?" My girlfriend went on to describe the difficulty her girls had going to bed and staying in bed...and the peppering of questions to get up to go potty, get a drink of water, etc. etc. Well - Deirdre had never done any of those things...until now. Consider this new phase "on." 

And yet, the good news is that for every challenging phase there's a distinct beginning...and a glorious end. Just like lupus. A flare does not last forever, despite what most of us may think come week three or month five of active disease. There are ups and downs - and having had some very down moments in my time, I can promise you that I never, ever believed I would experience the long, consistent string of ups that I do today.

But that's why I have to stick with my story that life with lupus CAN improve. The emotional and physical pain that you experience really can fall by the wayside, given the right treatment, time, and attention. And ever so slowly you can begin to rebuild your life, despite your chronic illness. As I mentioned to a representative from HGS (Humane Genome Sciences) recently, it just seems to take a whole book's work of effort! (Hint, hint!) 

"I would do anything but that", says I, the lupus patient

I admit that I'm a hyperbole user. That is, I use exaggeration in order to make a point. And I can't help it - I just think hyperboles are the best. (See, I really do!)

But every once in awhile, I have to stop myself. Everything can't be the best ever, and I can't always have a bazillion things on my to-do list. Just like Meatloaf can't say he'd do anything for love...

So while I used to think that I would do anything, and I mean anything, to make my troubles (lupus or otherwise) go away, I have to remind myself that over the years, there have been a few exceptions.

Here's what I mean:

After the first few years with lupus, I was pretty down and out. Physically, I was at my worst. I had trouble dressing myself, I could barely buckle my seat belt in the car, and my list of symptoms just seemed to go on and on and on. And I told myself, just like we all tell ourselves when we're in a bit of predicament, that I would give anything to feel better. I would make any kind of sacrifice or do anything necessary to make my lupus symptoms go away. And yet - when it came right down to it, I didn't. I wasn't willing to work less. I wasn't willing to rest during the day. I wasn't willing to scale back on my commitments, obligations, or "shoulds."

So yes - I was more than willing to do whatever it took to get better - except change those areas of my life that I didn't want or expect to change.

And you know that strategy didn't work out so well.

One of the next opportunities to make life easier came when Deirdre was born. I chose to breast- feed, and while it worked out pretty well in the end, there were a few ups and downs. I remember calling the lactation consultant in the beginning, and asking for advice on engorgement, soreness, milk supply, etc. etc. I remember saying I was willing to do anything to make the process easier. As she rattled off the things I should try - things like pump after feeding, feed Deirdre more often, take extra time to care for the sensitive areas - I remember thinking to myself, "Well, I can't/won't/don't do that", probably based on the lack of time, energy, or both.

Uh huh. At least I can say that I learned my lesson the first time, as there weren't too many "that's" when Bernie came along!

So today - while I try to stay away from the use of hyperbole when it comes to my commitment to wellness, I've realized that everything has to be fair game. If there's something preventing me from staying healthy, then I need to do something about it. And yes, it's usually the one thing I don't want to change...but most often it's the thing that has to change.  

So here's to our willingness to do whatever it takes to live well. May you have no  "that's" in the year 2012!

(And I couldn't resist including a link to the song. You're just lucky I didn't make it start playing automatically!)

Pinpointing your optimum lupus time

My naps have been a bit spotty lately. Not spotty as in I've been skipping them, but spotty as in it's been hard for me to lay down and actually fall asleep. It's not for lack of trying. Trouble is that I've been catching up on manufacturing calls, emails, and to-do's for the pillbags for the hour or two before my nap. So when I go to start my nap, my mind hasn't shut down yet; it's still in task mode.

For instance, on Tuesday, I had trouble falling asleep because I was so frustrated with the lack of response I'd been getting from a couple of new suppliers. On Thursday, I had trouble falling asleep because I was so elated with said suppliers because all of the samples I'd been waiting for came in.

Clearly, my suppliers are getting way too much of my attention - but that's another post.

The quandary I'm in now is how do I capitalize on the free-est part of my day when that part of the day isn't necessarily the best part of the day for me to work? Put another way -if 10-12pm is the optimal time to work because I'm fresh, energized, and raring to go, but 1-3pm is the free-est time because the girls are finishing up lunch, chilling, reading, or just beginning their naps, what do I do?

I remember oh so well trying to strategically schedule my days when I was really sick. During the years when I relied so heavily on those magic little pills like prednisone and NSAID's to get me going in the morning, I found that from 10am to about 2pm was ideal. My medicine had kicked in, I was as pain-free as I was going to be all day, and the fatigue hadn't crept in. From 2-4pm, things went downhill. My morning pain medication started to wear off, lupus fatigue had come on strong, and most of my joints were achy and beginning to swell. By 4pm...forget about it. I was a mess. Come to think of it, I tried to schedule my doctor's appointments strategically, too. Usually, I tried to capitalize on the part of the day when I'd feel my best - making the drive to the doctor's office, the conversation with the doctor, and the drive home as successful as possible. However, I remember a few rare occasions when I scheduled my appointments when I knew I'd be at my worst - just so I could show up and have proof of my symptoms. Thankfully, I didn't have to do that too often. Especially with my handy chronic chart in hand, I never minced words when it came to describing just how crummy I felt.

But back to the issue at hand - finding the best time to work, without jeopardizing my nap, health, or both.

Wow - I guess I just answered my question, didn't I?

I guess even though I may THINK it's ideal to work when the girls are chilling out, it doesn't enable me to get the rest I need in the afternoon. I wish it did, and perhaps someday it will, but right now, priority one is that I take care of myself, so that I can take care of those little ladies, long term.

And really - do you think they notice exactly what hour or two I sneak away to work? They just know that's their time to play with Paola...and they enjoy the break from plain ole' mom. And come the end of April, I won't be sneaking away much at all, since Paola leaves us at the end of that month.

Oh man. That's definitely another post.

Cardiac disease and lupus - a perfect opportunity coming up to find out more!

When it comes to cardiac disease and lupus, I really don't know as much as I should. As lupites, I know we're at greater risk of developing heart disease, but I've never really known why. And up until now, I didn't think I needed to explore the reasons. But finding out a few weeks ago that a thirty-something friend of mine with lupus had a heart attack, I decided to do a little research, and figure out why we're at risk, and what we can do about it. 


So you can imagine my excitement when I found out that the Lupus Foundation D.C. Maryland Virginia Chapter will be featuring Dr. Susan Manzi, co-founder of the Lupus Center of Excellence in Pittsburgh, a fellow Notre Dame grad, and one of the limited lupologists worldwide, as speaker at their upcoming annual summit in Chevy Chase, Maryland on Saturday, May 5th. 


What's her topic and one of her areas of expertise? Lupus and the heart. (Title: Keeping your Heart Healthy with Lupus.)  I'm not going to miss it! 


Click here to register for the event. (And yes, I'll be there with my pillbags and book...but during Dr. Manzi's speech, you'll find me front and center in the audience!) 


In an upcoming post, I'll tell you what I discovered in my research, and how it goes beyond the typical advice to keep your weight, cholesterol and blood pressure under control. All excellent advice, but I wanted to know - if I'm already doing that, am I in the clear as far as lupus and my heart go? Stay tuned!


In the meantime, here are a few snippets that I thought I'd share. Very interesting stuff!: 


*In studies that compared a group of women with lupus to a group of healthy women, researchers found that the lupus patients were more likely to have traditional risk factors for heart disease, such as diabetes and hypertension.  In addition, these women had an earlier onset of menopause, and had higher levels of unsafe blood fats, including triglycerides and low-density lipoprotein (LDL) cholesterol.  These factors are all exacerbated by the inflammation caused by lupus and contribute to the increased risk of coronary heart disease and accelerated atherosclerosis.


*Although heart disease is the leading cause of death for women in the United States, it usually does not occur until after women go through the change of life (menopause). This is usually around the age of 55 or 60. In lupus, women between the ages of 35-45 years have a 50 times greater chance of having a heart attack than women without lupus. Overall the risk of coronary disease is about 10 times more likely in women with lupus at all ages.


*Several factors specifically related to lupus are proposed to have considerable importance [in heart disease], including chronic inflammation, antibodies that attack proteins that regulate the blood vessels, and therapy, especially corticosteroid use.  As a result, researchers suggest that lupus should be considered equivalent to coronary heart disease as a known risk for heart attacks and strokes. 

Small hotel room equals lupus change of plans - and that's okay.

When it comes to life with lupus, I found out the hard way that you have to learn to be flexible. Canceling plans, aborting vacations, opting out of social engagements - when lupus is afoot, you never know what to expect. It's no fun to have to pull out a plan B, but preparing yourself for that fact seems to be half the battle. For me, it was as if reminding myself, "You're in a flare...don't be surprised if "X" doesn't work out so well" seemed to at least set the stage (and my mindset) for a change in plan.

Which is what happened over the recent Christmas holidays. Thankfully, it wasn't a flare that caused the alteration in my plan...but it was lupus related. Here's what transpired:

A few weeks before Christmas, my sister, my niece Emma, Deirdre and I headed to NYC for a girls' weekend. We went up for just one night, but it was plenty of time to pack in two full days of fun in the Big Apple. Before we left, I knew the nap situation for Deirdre and me would be a little dicey, given the small hotel room we'd reserved. But I promised myself that I would be flexible and just let things happen as they needed to. That is, if the room set-up wasn't ideal for us to both take naps, I wouldn't force the issue. I'd let Deirdre's nap slide, and she, my sister, and my niece could go exploring while I took a nap. Deirdre rallies much better than I do, and although we had a big night ahead of us, I knew Deirdre could make it through. I, on the other hand, needed all the rest I could get.

On the way up, Deirdre was asking what we were going to do once we arrived, and we all kept with the idea that she and I would take a nap, and then we'd meet up with Katie and Emma later. We had a chance of getting upgraded to a suite (at least we were the last two times we stayed at this hotel), and if that was the case, then we'd both be able to nap without a problem. We checked into the hotel, and while there weren't any suites available, they were able to upgraded us to a larger room. Great - still a possibility that the room would be configured to accommodate both of us. (Deirdre doesn't nap so well when she can see others napping. She just thinks it's a big ole slumber party!)

We took the elevator up to the room, opened the door, and I took one look at the room and said to my sister something like "Abort mission...if you don't mind, Deirdre's yours for the afternoon." It was obvious that with two beds side by side, with no partitions at all, napping with the two of us in the room would have been a nightmare. And I could have forced it. I could have encouraged Katie and Emma to go exploring while Deirdre and I had some rest time. I could have rigged the computer so that she could have watched a movie and relaxed, or set her up with some books to calm her down. But you know what? That wouldn't have given me the full rest I needed to make it successfully through the quick up-and-back trip. As it was, we had been up early, we would be up late, and I was going to have to nap during our trip back to D.C. the next day. No - I had very little room for error...and so I made an executive decision. Deirdre would get a pass, and I would get my sleep.

Of course, she was thrilled...and I was lucky. My sister didn't have to offer to take Deirdre off my hands. But she did, and I accepted. Sure, I wish I could have given Deirdee the rest time she needed, but I had to think of myself first. Otherwise, I could have spoiled the whole trip for all of us.

My mother-in-law once told me that babies have a way of knowing what their parents need. I'm positive that sweet little Deirdre knew what I needed that day. She knew I needed rest, but she also knew that I needed her to keep it together. Katie said she was a perfect angel during my nap - as she was the entire rest of the trip. No overtired tantrums, no difficult 3-year-old shenanigans running on fumes...she was just as sweet as can be. Which made it so much easier to know that I did the right thing, and that I might just have to do it again some day.

Of course - at just 3 years old, Deirdre's too young to say, "You owe me one." But I know I do. That's why she's my absolutely positively favorite oldest daughter in the whole world. And you can tell her I said so!

Sleep, glorious sleep! The 12-hour remedy.

I've known for a long time that I need sleep. As I've mentioned before, I try to get an hour and a half to two hours of sleep during the day, and at night, 8 hours is minimum, 9 hours is ideal, and 10 hours is heavenly. This is just the way it is - and I figure if I can combat that debilitating lupus fatigue with extra hours of shut-eye throughout a 24-hour period, then so be it. Am I really missing anything? I don't think so!

That said, a few nights ago, after I put the girls to bed, I decided to lay down for a few minutes. That was at 8:30pm. Three hours later, I woke up - just long enough to do my nightly routine stuff and chat with Johnny for just a few minutes - and then it was back to sleep. At 7:30 the next morning, I woke up feeling like I could run a marathon. I actually stayed in bed until almost 8:30am, because the girls woke up late and Johnny headed them off because he figured I needed the extra bit of rest. And I guess I did!

I wasn't too surprised that I needed a catch-up night of sleep. I'd had some late night manufacturing calls with suppliers in other time zones, and Johnny and I have been allowing our bed time to slip into the 11:30pm realm...which we both know is too late. But what was so eye-opening about this almost-12 hour marathon, was that I woke up feeling so good. I was completely rested - and I realized that on those nights when I only get eight to eight and a half hours of sleep, I wake up tired. Not lupus tired, just the normal I-wish-the girls-had slept-later tired, or I-shouldn't-have-read-that-last-chapter tired. Nothing that impacts my day, but definitely something that I now know doesn't have to happen.

So now that I've had a taste of how rested I can be, I want to wake up that refreshed and ready every morning. It's just as the author of the article cited in Wednesday's post said - we don't know how compromised  our well-being has been until we've had a taste of how good it can be.

So it's back to a 10:30pm bedtime. That almost always ensures 9 hours of sleep at night - which is my sweet spot. I can try and convince myself otherwise, but it won't work. Now I have my recent 12-hour experiment to prove it!

Goodbye lupus - sharing a great article!

A girlfriend of mine sent me this article recently - it's a personal account of a woman who has lupus, but has recently been given a clean bill of health. That is, her symptoms are what I would call "clinically quiescent".  Titled "Goodbye, lupus. You don't own me anymore.", it's a great reminder of the hope and possibility that's out there for all of us. Below is one of my favorite paragraphs from the piece - but the whole thing really is wonderful. You can read the entire article here:

As human beings, we all experience situations in which we have to adapt, physically, socially or environmentally. It amazes me to know that we can get used to just about anything and how quickly we forget about the beloved “old ways” of our past. I accepted my symptoms and the indescribable fatigue as status quo. They were rarely challenged, perhaps because I was just too darn tired to challenge them. It was only in health that I came to realize how sick I was and how compromised a life I had lived.

Pulling an all-day-er just isn't for me!

While I’m not exactly what you’d call a “working girl”, my travels for my book and my recently launched toiletry bags are definitely keeping me busy. My bags are taking a little longer to ramp up than I'd hoped, but between manufacturing woes and patent protection, I’ve just had to be patient and wait on announcing them to the world. 

But I have learned something, just in the few experiences of selling my bags. And that is this –  the all-day trade show/gift show/exposition and holiday spectacular scene is not an ideal fit for someone like me. Standing for hours at a time – working all afternoon – I'm just not capable of working that way anymore. Don't get me wrong - I love all the hustle and bustle that's involved. The other vendors, the customers, the energy surrounding the events - it's wonderful. But what's NOT wonderful is that fatigue that sets in every afternoon, regardless of how much fun I'm having selling my wares.   

So I’ve had to employ help. At a couple of the shows, I asked my sister to man the booth while I left to take a nap. Yes, I hated leaving. And yes, I felt like I was missing out. But it worked out pretty darn well. I was rested, Katie made some sales, and I think we both felt as if we were fulfilling out sisterly duty. I was following big sister’s orders (to rest), and she was coming to little sister's rescue. All around, a good fit. 

I have several more all-day events booked this year, and I'm already brainstorming on the best way to handle the afternoon. Do I leave and come back? Do I schedule shifts among those near and dear to me - that is, my sister, husband, and others? Is it cool to just pack up and leave? 

The good news is that I'm planning ahead, and that I have no intention of just pushing through the event into the wee hours of the afternoon. Been there, done that - and it's not productive. I'd be the lamest sales person ever...or at least the most tired!

Stay tuned for more on this. I'm sure I'll be sharing my solutions in posts to come!

Lupus doctor appointments - three months and counting. Jinx no more!

About a year ago, I announced the fact that for the first time in my lupus tenure, I was able to go a full 3 months between appointments. It was a personal best, and I was thrilled to have reached the new benchmark. (That big break only lasted once, but it was still exciting.) The 3-month prospect had happened a few years before that, but a few days after I posted the blog about going 3 months between appointments, my doctor called, and revoked the 3 month hiatus. Bum deal! Turned out at that time, my protein levels, etc. were up, and so he ordered a 24-hour urine test, and asked me to come back after my test results came in. The three month gap was not meant to be – and I contently settled back into my 2 months-between-appointments routine.

Until now.

Just last week, my doctor suggested that once again, we give the 3-month gap a try. And I’m up for it!   I know to call if something comes up, but for now, I think seeing him in three months time will be a real treat. Of course, when I was making my appointment with the receptionist at the end of the appointment, I said, “Okay, three months – that must be like June or July, right?” Not quite. It only gets me to May. But that’s still an extra month off.

And if my doctor calls in three days to say that my blood work, UA sample, or the like are abnormal and need retesting, well, so be it. I’ll enjoy the gap while I can, and not worry about the power of the jinx.

At least I’ll try not to!

Lupus: Down and out and caring for the kids – an objective perspective.

Johnny’s bout of the flu bug is finally coming to an end. He’s still not 100%, but as he declared, the true benchmark of his wellness is that he can do voices while reading books to the girls. And his funny little voices are back…so life is slowly returning to normal.

But having watched him struggle so, I realized once again how hard it would be to take care of the girls if I were sick. I’ve never underestimated how difficult it must be for those moms and dads out there whose diseases are flaring…I know how lucky I’ve been to have kept those flares at bay since the girls have been around. But knowing how hard Johnny was trying to manage the "fun, upbeat Dad" routine, despite his illness, I realize that it would be my own expectations as a supermom that I would have to have deal with. 

I was away for a couple of days while he was sick, and I encouraged him to find ways to conserve his energy…so that he would somehow find a way of get up the next morning and do it all over again. He figured out a few things for himself, of course, but I think he appreciated the suggestions. Things like letting the girls play by themselves as long as they were within ear shot (and safe, of course), watching as many movies as they could, or recruiting the neighbor girls to come and help seemed like the most obvious, practical options for a sick parent to employ. And yet – if I were in his shoes, I know how hard it would be to make those things happen without feeling guilty – without feeling like I was shirking my responsibility – without feeling as if I was letting my girls down.

But should the time come to pass, I’ll just think of Johnny. I’ll remember how simple it was to dole out that advice, and how sensible it seemed for him to do whatever he could to rest and take it easy. He did pretty well – and most importantly he made it through – but from an objective perspective, I know he could have done more (or is that less?) to give himself a break.  

Most importantly, however, I know I could have done more. I’d toyed with the idea of scheduling Paola, our au pair, to work on the weekend while I was away, but when I asked him if he wanted her to work, he said no. He was sure he’d feel better by the time the weekend came. But as a caretaker, and as someone who’s been there, I should have known. I should have ignored his positivity and hopefulness (that I so often have exuded), and lined up the babysitter so that the option was already in place. It wouldn’t have been on him to decide that he was really too sick - the decision would have already been made for him. So that when he woke up feeling absolutely awful, he wasn’t forced into putting on a happy face when he was feeling anything but. (And how many times have we lupites done that?)

So caretakers, take note: while you must tread carefully when it comes to inserting yourself into the life of your loved ones (which is another post...), I do believe that trying to anticipate their needs and having contingency plans in place are essential. You can't force your plans, of course, but having assistance ready and pre-arranged is going to be awfully hard for your sickly loved one to refuse.

At least it would be for me! 

Another false alarm - this time, my gut doesn't lie!

A few weeks ago, I blogged about a series of false alarms I had experienced - one with some fatigue, another with my website - both of which resolved themselves fairly quickly. I had another one to add to the list, but I didn't want to mention it until the resolution was confirmed. So here's the latest (and hopefully last) false alarm for the season!

First - let me ask you - where's the easiest place for you to take your pulse? Your wrist? Perhaps your neck? Those work for me, too - but the absolute easiest, i.e. strongest pulse point for me is in my stomach. That's right - I can actually press two fingers lightly into my stomach right above my belly button, and presto! I feel the strongest heartbeat you can imagine. It's my aorta, of course, and I've been able to feel my pulse there for years. Even as a kid I could do it. Of course, my body structure has evolved over time - having made room for two bambinos, subsequent weight gain and weight loss - but that easily-accessible heartbeat hasn't budged. In fact, that pulse point's only gotten stronger since giving birth to Bernadette. And at one of my last appointments, I decided to ask about it. 

And ask, I did. My rheumatologist did a physical exam, and found the heartbeat to be quite strong - much stronger than he expected. So much so, that he thought something was amiss. He confirmed that it's irregular for the aorta to be that close to the surface of the stomach - and suspected an enlargement - indicating an aneurysm. Not exactly what you want to hear, right? 

He ordered an ultrasound, of course...but I still wasn't too worried. After all, this wasn't something new. But knowing my unpredictable body as well as I do, I decided not to write it off completely until the results of the test were in. 

But I didn't panic. Although I was 90% sure my aorta was fine, I figured if there was something wrong - better to figure it out now, rather than let that aneurysm do unnecessary damage. I admit that it helped to have the sonographer hint that she'd tested for this kind of thing in people built like me before, most often with negative (meaning good) results. But I still give myself a pat on the back for remaining cool, calm and collected. A honed skill from years of waiting for test results past, I'm sure.  But her hint was a nice tide-me-over until I got the word from my doctor directly - no aneurysm in sight - just an inordinately close-to-the-surface aorta. Good for pulses, bad for knife fights, I suppose. I'll be sure to make a note. 

So that's that. Another false alarm under my belt - and just another opportunity to learn not to panic!

The fingernails don't lie

With 11 years of lupus under my belt, and a chronic control spread sheet to go along with it, I tend to have a pretty good handle on when I'm in "good health" and when I'm not. Thankfully, I've had many more healthy trends than not - so I haven't had much to track in the old spreadsheet as of late. But one thing I was keeping my eye on was my weight. When I get sick - I tend to lose my appetite. And with no appetite, comes weight loss. And last fall, I was losing weight. Not a ton - more than 5 pounds, less than 15 - but it was significant enough that I noticed. And my pants noticed. And most importantly, my parents noticed. And when they notice, I have to sit up and listen.

So I did. I mentioned it to my doctor, and we watched it carefully. We kept my appointments close together so that he could monitor things frequently. And I kept an eye on my symptoms, which, thankfully, were non-existent. There was no joint pain, no swelling, no increased protein at all. There was absolutely no sign that lupus was a foot. Just the weight loss.

And the nails.

Turns out, my fingernails weren't growing either. It wasn't that they were growing and peeling, or breaking, or chipping...it's just that they weren't growing. At all. And this coincidence has happened before - in fact a handful of times. If my body's not well, my nails tend not to grow. And when my body is well - my nails grow steadily.

So now - mid-winter, there's good news across the board: my appetite has returned, my weight is making its way back to normal, and my nails are going strong. Not sure if I could ever prove the connection - but I'm not so sure I need to. I think running with a hunch is just fine for now.

Of course, if my nails have earned a line item on the spreadsheet...well, then...I guess they've "arrived", haven't they?

Here's wikipedia's take on nail growth, and thoughts from WebMD, and Care2.com. Nothing particularly conclusive, although the mention of nutrition sure seems to make sense.  Guess it's just a little food for thought!

Benlysta 101 - questions and answers

Kudos to Human Genome Sciences and GlaxoSmithKline for their efforts to educate the lupus community on Benlysta, their new lupus drug that got FDA approval last year. Since the drug became available, they've published a ton of patient-friendly information on the drug, some of which I'd like to share with you here. This came to me in an email, via a program they call "Benlysta Connect". I call it kind of a 'Benlysta 101" - more questions and answers like those listed below can be found here!


BENLYSTA 101: 

Why is the drug given as an infusion?


Your doctors may have explained to you that BENLYSTA is an intravenous infusion (also known as an IV). You may be wondering why BENLYSTA can’t be taken as a pill. It’s because BENLYSTA is a type of drug called a monoclonal antibody. This type of drug would be broken down in the stomach and lose its effectiveness. 


How does the infusion process work?

Here’s a look at the infusion process:

• Before the infusion: When you arrive for treatment, a nurse may ask questions about how you are feeling and take your vital signs (temperature, pulse rate, blood pressure). In some cases, you may receive medications prior to the BENLYSTA infusion, such as an antihistamine, to help reduce your chance of having an allergic reaction. It is not known if these medications will help reduce the chance of an allergic reaction to BENLYSTA. • During the infusion: When the IV line is inserted, you may feel some pain or discomfort. • After the infusion: You may feel some discomfort where the IV line was inserted. That should go away within a few hours. If you took an antihistamine, you may feel drowsy. It's important that you have someone drive you home, especially if you are drowsy. Depending on how you feel, you may be able to return to your usual activities. Contact your healthcare professional if you don’t feel well or have soreness or tenderness at the infusion site that does not go away.

 
Where do you get the infusion?

There are several locations for infusion treatments, including a doctor’s office, an infusion center, and infusion clinics within hospitals. An infusion location may have one or more rooms with comfortable chairs in a common infusion area, and even private rooms with beds. Not everyone at an infusion site will be receiving treatment for lupus. People may be getting infusions of other medicines for other health conditions. If your doctor prescribes BENLYSTA, ask your doctor or nurse to describe the site where you’ll be receiving your infusions. You may even want to visit the site before your first infusion and meet the medical staff. This way you’ll know how long it will take to get there and what to expect once you arrive, which can make you feel more comfortable. How often do you get the infusion?  After receiving the first infusion of BENLYSTA, the recommended dosing schedule is to receive the second infusion at 2 weeks and the third infusion at 4 weeks. After this, it is recommended to receive BENLYSTA once every 4 weeks. You may wonder why it is recommended to receive three BENLYSTA infusions in the first 4 weeks—called a "loading dose." This is consistent with what was done in the clinical trials evaluating the safety and efficacy of BENLYSTA. What are some typical reactions to infusion?  Serious reactions may happen on the day of treatment or the day after receiving BENLYSTA. The most common symptoms of a reaction can include: Itching Swelling of the face, lips, mouth, tongue, or throat Trouble breathing Anxiousness Low blood pressure Dizziness or fainting Headache Nausea Skin rash, redness, or swelling Tell your healthcare professional or get emergency medical help right away if you have any of these symptoms.