Lupus Biologic Drug Guide

There is not ONE pill for lupus; there are many!  Rarely will you find two lupus patients that share the exact same drug regimen, Why? Because we do not share the same symptoms. Lupus is a complex disease. Many of the drugs we are prescribed are the same drugs that are prescribed for other disease, including arthritis, cancer, and etc. Major case in point: being prescribed Plaquenil — an ANTI-MALARIA drug!

I came across this article from Arthritis Today that gives a great description of the popular drugs prescribed to control lupus. You can sign up for email alerts and receive some great information that is endorsed by the Arthritis Foundation.

Today, I have copied and pasted the “Biologic” portion by Donna Rae Siegfried. This was compiled with the Arthritis audience in mind, so I have included some lupus-friendly information in the right place.

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BIOLOGICS: (By Donna Rae Siegfried)

[Diva note: Benlysta falls in the biologic category]

What are biologics?

In general, biologics are genetically engineered medication made from a living organism, such as a virus, gene or protein, and then used to treat a problem occurring in a different organism, such as a human. Vaccines are one type of biologic agent. In contrast, other drugs are synthesized chemicals.

What conditions do biologics treat?

Because the biologics block triggers of inflammation, they are used to treat autoimmune forms of arthritis, such as rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), ankylosing spondylitis or psoriasis/psoriatic arthritis. Inflammation is the result of the immune system’s errant attack on the body’s tissues, causing joint pain and destruction, as well as other systemic effects, such as fatigue and heart and lung damage. Some biologics approved for rheumatoid arthritis are approved for, or are in development for, other conditions, ranging from Crohn’s disease to cancer.

How are biologics used?

Some biologics are used after a patient has “failed,” or not responded adequately to, traditional disease-modifying anti-rheumatic drugs (DMARDs) or other biologics. When a biologic drug is used for treatment, it is used often in combination with a traditional DMARD, such as methotrexate, for greater effectiveness.

Will biologics cure RA or other conditions?

Unfortunately, no! But the biologics, which work for about two-thirds of people who have rheumatoid arthritis, can induce remission in most people who respond favorably. A clinical remission is defined as fewer than 15 minutes of morning stiffness, and no tender or swollen joints for at least three months. Treating rheumatoid arthritis and other inflammatory forms of arthritis aggressively with DMARDs, including biologics, as soon as possible after diagnosis increases the chance of remission, as well as minimizes the risk of limited function due to permanent joint destruction.

Why can’t two biologics be taken together?

Biologics and other DMARDs decrease inflammation and disease activity by impairing the immune system’s activity. But suppress the immune system too much, and an overwhelming infection could take hold. Limited studies suggest that taking two biologics at the same time would increase the risk of infection markedly, without an increase in therapeutic benefit.

Why are biologics so expensive?

The materials required to create these agents are more expensive, and the manufacturing processes using live organisms are more complex than are required for traditional chemical pharmaceuticals. Other factors include the high cost of research and development.

All of the current biologics are still under patent protection. After a traditional drug patent expires (20 years from the date the company applies for it), other companies can produce generic versions that cost less.

It’s not clear yet how generic biologics – frequently called “follow-on biologics” – will be handled. The unique process of producing copies of biologic agents presents issues of consistency, as well as proof of safety and effectiveness. The U.S. Food and Drug Administration (FDA) currently has no authority to approve a follow-on biologic for the marketplace, but there are bills in Congress to change this.

Why can’t biologics be taken in pill form?

The biologics currently approved by the FDA must be injected or infused (that is, given intravenously) because they are made up of large protein molecules that cannot be absorbed if taken orally. Seven oral rheumatoid arthritis drugs made from small molecules are now in early stages of development and testing.

Do all biologics work the same way?

Although the goal of biologics is the same – to stop damaging inflammation – they interrupt the complex cascade of cellular events that drive inflammation at different stages. Belimumab (Benlysta) blocks different inflammatory proteins than does the RA-biologics. Belimumab is a human monoclonal antibody that inhibits a protein necessary for the maturation of B-lymphocytes, cells involved in the autoimmune response that underlies lupus. Rituximab (Rituxan), another lupus-biologic hopeful, stops the activation of a certain type of white blood cell called B cells. It was originally approved to treat tumors, then rheumatoid arthritis, and most recently vasculitis. Evidence thus far is mixed regarding its use as a treatment for lupus (and lupus nephritis). Although randomized clinical trials (gold standard of evidence) have not found it to be superior to standard regimens, there are many signs that it may be effective [Appel GB. Clevel Clin J Med 2012– contact me if you would like to see full article]. For both of these biologics, the theory is the same: With fewer B cells, the overactivity of the immune system decreases.

On the horizon: Abatacept (Orenicia), a “co-stimulation” blocker, is undergoing clinical trials in lupus nephritis. Results shuold be available shortly. 

Diva note: Overall, biologics are a serious drug, and not for everyone! The decision to take it requires: 1) a balancing act of the risks and benefits AND consideration of all factors (i.e., cost, convenience, risks and overall potential benefit), 2) making sure these medication characteristics are in alignment with your preferences, 3) a good talk with your doctor, and 4) good adherence strategy– remember to do your part as a patient. Doctors can only do so much for us.

Stay Fabulous!

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Lupus Treatments: Trial and Error… and Patience

As we all know, there is no one treatment ([n]or cure) for lupus. How many times have you been asked, “So, there is no cure for that?”. OR how about that frustrated question from your love one as you are unable to move out of bed, “Aren’t you suppose to be getting better by now?”  HOW DO YOU RESPOND TO THAT?!? We have all been playing the worst waiting game… Waiting for the right treatment to make us feel an ounce better; Waiting for our quality of life to get back to how it used to be; Waiting to start living our life again.

…Just waiting…

Lupus requires a trial and error of finding the right medication(s) to help you get to that magical state of “remission”… or at least to a state where you do not feel limited. Yesterday, I had my 11th infusion of Benlysta (I will be hitting the one-year mark in December). In addition to my infusion, I had my monthly visit with Dr. Lupus. While I was waiting for him, I was flipping through his collections of throw-away magazines in the room. I grabbed one and stumbled onto a full-spread advertisement for Benlysta. It featured a happy-looking woman enjoying some social time with family and friends with the phrase: “I am fighting lupus with Benlysta.” I chuckled to myself and threw the magazine (in a passive aggressive manner) back onto the pile. I have been on this magical Benlysta for almost a year… and yet I am still waiting for a better outcome. Yes, I have felt better from 2 years ago… but I have had more than my share of lupus flares and hospital visits. Feeling my frustrations, my doctor agreed that  Benlysta-alone was not doing the trick— I have had 2 lupus-related hospital visits in the month of September, become a pill-popper to minimize the pain, and was sitting in front of the man with a temperature of 99.4 degrees. My doctor and I came to a shared decision to a new combination of Benlysta, prednisone and Imuran (azathioprine). This new combo will be sixth attempt to find lupus-relief.

Here is my lupus medication history.

MY TRIAL AND ERROR

Trial #1: Plaquenil (hydroxychloroquine) + Prednisone (duration ~8 months): It takes about 6 months for the effects of this anti-malaria to kick in. Before I can even get this pill in my hands, I had to get an approval from an opthamologist . Why? Because there is small risk (no more than 4% in unmonitored patients) of blindness. Pretty severe adverse effect, eh?

Error: Major muscle weakness. I found myself saying to my doctors, “I feel like my body is too heavy for my legs”.

Trial #2: Methotrexate + Prednisone (duration: ~4 months): I first started by taking the pill-form but had to switch to the injections to alleviate nausea often associated by ingesting the pills.

Error: Respiratory problems, an adverse effect of methotrexate. Saravanan and Kelly (Rheumatology 2006) stated: “As patients become less limited by their joint disease due to treatment, an increasing number report breathlessness as a result of respiratory involvement.” Keep in mind, fans, that I have asthma; so this put me at higher risk.

Trial #3: Benlysta + Prednisone (duration: ~2 months): I have previously talked about my journey with Benlysta. Go ahead… take a look at the past posts.

Error: It was not doing the trick.

Trial #4: Benlysta + Methotrexate + Prednisone (duration: ~3 months): I have talked about this as well. Go ahead… take a look. 🙂

Error: Overall, feeling of still-feeling-shitty and the respiratory problems. I felt like I had the flu. After this, it became very clear that methotrexate was not for me. Oddly enough, after I was taken off of methotrexate, I ended up in the hospital for heart and asthma problems. My pulmonologist explained that methotrexate was giving me some protective factor against asthma, and once I had given it up my air sacs decided to act up!

Trial #5: Back to Benlysta + Prednisone

Error: Still feeling shitty

Trial #6: Benlysta + Prednisone + Imuran

Before taking Imuran, your doc will run a genetic test. This is to determine if Imuran is the right drug for you. Certain risks that are associated with this drug are greater in those who have a specific genetic disorder. Your doctor will perform genetic testing prior to starting therapy to determine your risk.

I will keep you posted on my treatment journey… I am crossing my fingers that I will soon finish this damn “trial and error” phase of lupus.

For more info on lupus treatments, check out these two links from:

Lupus Foundation of America

Mayo Clinic

Stay Fabulous!

Diva-Worthy Song of the Day No. 4

Excuse Me- I am Still Standing

I let lupus get the best of me! AGAIN! I hate to admit this but for the past 3 months, I have been in hiding and nothing, not even a huge bottle of CYMBALTA, could get me out of the dumps. I had lost my DIVA-ATTITUDE! You want to know why? Because, Lupus sucks the big ONE. I am so over this disease. Let me share my tale of terror.

FIRST, I had to come to the following as a 30-something-year-old woman: 1) I can no longer live alone and had to move-in with my parents, 2) I can no longer drive… people of Houston were in danger, 3) I can no longer work a full 50-hour work week, and 4) OPIOID DEPENDENT. If that wasn’t pyschologically-ball-busting enough, my body decided to join the fun. In addition to fighting off daily-minute-by-minute pain, brittle bones, and trying to function with a crappy-central nervous system, I come to realize that my kidneys have thrown in the towel and my ovaries felt the need to funk out (aka premature ovary failure. Now my 60-year-old tia and I can bitch about hot flashes together, and I can gain 5lbs by looking at a cupcake). Soon I will be telling tales of the diva with lupus nephritis. Surprisingly, my liver is still holding on by a string. Apparently, all that training of binge drinking and drug use I put it through during my younger years paid off. On top of that, I have been exhausted and fatigued because my lone-leukocyte from my non-existent immune system (thank you, Benlysta) has been fighting infections left and right, including urine, respiratory and folliculitus (infection of the hair follicles– lame).

Of course, I still had to deal with life. And I may have not done such a great job with dealing with it. I had responsibilities like: going to work, submitting a grant, doing maid-of-honor stuff for my friend (the bride-to-be), and still try to maintain my composure. AND people still wanted me to be social and attend birthday dinners and game night?!?! YOU HAVE GOT TO BE KIDDING ME! What I really wanted to do was: Tell my boss to go to hell, NOT submit the grant that won’t get funded because of some political reason, tell my friend that I could care LESS about her bachelorette weekend and that she could shove her royal-wedding theme bridal shower (her idea) up her small ass, and crawl into bed with two-handfuls of vicodin and Norco. HOW DARE YOU?!?

WHEW! There you have it fans, I just queened out.

All of this was physically and emotionally exhausting- which induces flares. I am confident that everything will be OK. I trust that I am in good hands with Dr. Lupus and I have tremendous support from my family and my close friends. These are the guys that are always there, even when I feel like shit. They get it. So, why am I sharing this story? I do not share my stories for your sympathy or your “I’m sorry”. Because, I am not sorry. I am grateful for this experience. I am realizing more about myself and others through this process. I am actually lucky.. VERY LUCKY. I am grateful to even be breathing and able to type this out to school my fans. 😉

Take your pen and paper out, fans. Because here is your lesson that you will never forget. If you are able to blink and take a breath, you are STILL STANDING.

I tell myself the following phrase everyday:

I have everything within me to conquer the world.

Now, I may do it at a slower pace, but DAMNIT I will do it. It sounds lame, fans, but we can do it. Do not let lupus (or anyone else) bring you down.

The DIVA is back and this is a turning point in my journey and I am looking forward it.

Stay Fabulous

Insert Creative Title Here: Benlysta and Common Side-Effects

I started my first Benlysta infusion late December 2011.  I just had my 7th infusion yesterday afternoon along with my monthly visit with the GREAT Dr. Lupus.  Today, I am feeling the “what- is-becoming” my normal after-poking side effects. Although it took awhile (yes… I am a bit dumb and slow at times), I think I am finally at a place where I can predict how I will feel after an infusion. You would think that the day following infusion is all sunshines and butterflies.   WELL IT ISN’T, DAMNIT! This IS the time when you will most likely notice the common drug side-effects, including:

  • Nausea
  • Diarrhea
  • Fever
  • Stuffy or runny nose
  • Sore throat
  • Cough (bronchitis)
  • Trouble sleeping
  • Leg or arm pain
  • Headache (migraine)
  • Urinary tract infection
  • Decreased white blood cell count (leukopenia)
  • Vomiting
  • Stomach pain

I have experienced most of these side-effects post-infusion (except leukopenia) at least once, twice or thrice.  Those that are highlighted above are the ones that have become part of my day-after-infusion routine.

Let me elaborate: As soon as I came home from my infusion, I crashed into what-I-hoped was-my-bed and did not wake up until 7 hours later… at 1 am! I still receive Benadryl pre-treatment with my infusion because I am a geeky-glasses-wearing-allergic.  Although I do not fall victim to the Benadryl’s sleeping spell during my treatment, I later become tired and silly-loopy as soon as I sit in the passenger side while a family member drives me home. My poor father was victim to my slurred, idiotic conversations regarding unicorns and cheeseburgers. After I climbed out of my mini-coma at 1 am, I checked my phone and saw that I sent some silly texts in my drugged haze (similar to those drunk texts that we are all too familiar with…). This is when I come to notice that during my haze I made an attempt to become a literary genius. I can’t make this up, nor do I have any shame…. This is an example of a text I sent last night: “Hey Faaagina  [obviously sounding out vagina] I need to blow so that I can grow”.  There you have it, fans, go ahead– judge me. Don’t Text Post-Infusion!

Kids don’t Infuse and Text!

Of course, I had trouble going back to sleep after waking at 1am. During my tossing and turning, I decided to welcome stomach pain and headache into the mix. 😉 When I did finally get to sleep, it was very light and unrestful.  I stumbled out of bed this morning and experienced the greatest combo o f leg and arm pain along with vomiting. Try rushing to a toilet when you can’t move your own damn legs.  It takes skills and talent. But I made it to work this morning… and on time. At this very moment, I am still experiencing arm and leg pain (on the right side) and a little of the “drugged” feeling (a la lupus fog). But I am still here and making it happen… one step at a time (baby steps)!

SIDE NOTE:

I think I am starting to see a little, teeny benefit from my combo of Benlysta and methotrexate (yay!). I expressed this with Dr. Lupus (“Hey doc, I don’t think I am getting worse!”) and we are going to continue the course… so I am crossing my fingers that I am making my way to the light at the end of the tunnel.

 

Stay Fabulous!

Methotrexate + Benlysta = ??

Methotrexate, developed to fight cancer, is known as the “gold standard” — the best drug — for the treatment of rheumatoid arthritis. It has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus. Belimumab (Benlysta) is used with other medications to treat people with certain types of systemic lupus erythematosus. Belimumab is in a class of medications called monoclonal antibodies. It works by blocking the activity of a certain protein in people with SLE.

Again, I awake on a Sunday morning thinking:

What day is it?!?

1) What day is it?

2) How long was I asleep? and

3) What did I do on Saturday?

As I had mentioned before in a prior post, infusions of Benlysta alone was not enough to control the monster that is lupus. This is common,  as many patients are taking Benlysta in combination of some other lupus-regimen. For these patients, including myself, lupus seems to be too aggressive for just one treatment (i.e., monotherapy). For my case, Dr. Lupus put me back on the weekly, injectable methotrexate regimen in combination of the monthly Benlysta infusions (i.e., dual therapy). After several weeks of no improvement, my methotrexate dose was increased.  The results? It is too soon to tell, as improvements usually are first seen in 3-6 weeks. The full benefit of this drug may not be seen until after 12 weeks of treatment.

Although I may not (yet) be able to notice the benefit, I have noticed some of the lovely side effects that come with methotrexate: 1) nausea, 2) slight hair-loss, and 3) FATIGUE. A little nausea is expected with methotrexate, but there are some actions that can be taken to reduce this. First, if the stomach issues are really bothersome, switching from pill- to injectable-dose can reduce these issues. I originally was prescribed the pill-form of methotrexate but suffered with crazy nausea and vomiting. Plus, my appetite decreased with the pill-form (side-note: not a great thing! I am a lady who loves to eat!). Once these concerns were expressed to Dr. Lupus, I was handed a syringe and bottle (along with some lessons on how to poke myself properly).

What about the hair-loss?Well, it isn’t too bad. I should mention that losing a couple of strands is not bad in comparison to once being bald. I do have to practice the art of “cover-up” as part of my morning routine. Due to the crazy Houston heat and humidity, I have ditched the wigs. My options have been 1) tying a scarf, 2) applying the fabulous and dependable Joan Rivers Beauty Great Hair Day fill-in powder (brush included when purchased), or 3) Kamo hair fibers (literally small hair fibers that camouflage for full-looking hair).  Different from lupus-induced hair loss, hair loss from methotrexate use does come back. Just give it some time.

Fatigue is the number one side effect of Methotrexate.

Sunday morning-ish

FATIGUE— what provoked me to write today. I take my weekly shots of methotrexate on Friday evenings. Its amazing how my body knows it is time for the weekly injection, because I am hurting Friday mornings and throughout the day. Like a druggie, all I can think of is getting home to shoot myself up with this poison (really- the color of this liquid is Mountain Dew yellow…). A couple of hours after my injection, I am exhausted and fall into my bed. I only emerge from my cave of a bedroom until the following Sunday. That’s right- all of Saturday is GONE! Yes, I am a tad frustrated– only because I am still a single-thirty-year-old who wants to have fun, especially on a Saturday. My weekend routine has become a huge lonely sleep-fest with the occasional web-browsing to have some connection to the outside world. And, of course on Sunday, I check on Facebook and Twitter to see what  kind of dumb trouble my friends got into– and I do judge them ;).

Balancing the drug risks and benefits… while factoring in side-effects, nuisances, convenience, and quality of life

THE DIFFICULT MATH EQUATION OF LIVING WITH LUPUS (or any chronic disease that requires treatment): We all know that pill we swallow, that injection we take in, or that liquid that we watch dripped and infused into our body via IV has a risk-of-something. Those risks, severe or not, have to be balanced by US, the patient, with the potential benefits. So, when do we say NO MORE to the drug that is potentially there to help us? Well, that is on an individual basis. We each have our own preference and we each need to voice that preference. We, as patients, need to know the answer to the difficult math equation:

When do the drug risks and side effects outweigh the benefit of treatment and our quality of life?  

Remember, to include those other factors that may weigh your decision- costs, convenience, nuisance… etc. These factors will differ for every person. Unfortunately, I don’t have the answer to everyone’s equation… I am just barely figuring out mine. For instance, the equation I face is the following: How do I balance pain-relief to quality of life? In other words, is the potential pain-relief worth me losing a Saturday? I will know the answers once I start seeing the benefits… but for now I don’t mind getting to spend one-day in bed while my body is getting its fix. And to be quite honest, I feel better on this Sunday.

Catching up

It doesn’t matter what you have or what you look like, everyone has to work at being confident.

I have been a horrible entertainer– I have been taking too long of an absence from sharing my stories. Although there is no excuse, I have been on a pendulum where my health has not been stable! Instead of recording my events during my free time, I have been living in my bed and popping pills with hopes the next is better. It is too bad that work gets in the way of me getting better. So for now, let me spit out a list of events that will satisfy two things: 1) Give you a sense of the stuff I have been going through, a need to come back to read the full scoop and perhaps give you the chuckle you needed today and 2) Function as a to-do-list of blogs for me to write within the next couple of weeks (yup- lupus CNS/fog has gotten the best of me and I have no memory).

Let me try to do this in chronological order:

1. Feel like crap
2. Dr. Lupus decides to put me on a dual-therapy lupus regimen of Benlysta and Methotrexate because the Benlysta alone is not doing the trick
3. There is a shortage for methotrexate serum (for injections)
4. I get tattoo #6 (first tat while a lupus patient) in dedication to my lupus fight and survived it
5. Discovered a new product, other than Joan Rivers’ product, to cover-up those couple of stubborn bald spots– Kamofibers.com
6. Met a man who seemed to understand and accept what I was going through (who I shall now refer to as Mr. Pibe)
7. Dr. Lupus gives me a guilt trip when he found tat #6… my immediate excuse: “I don’t even know how that got there!! I just woke up and it was there… must be a new lupus skin reaction…”
7. Man took me to one of my infusions and took care of me afterwards… how sweeeeeeeetttt
8. The phrase “Lupus Nephritis” enters into the conversation between Dr. Lupus and I
9. High blood pressure…
10. Feeling crappy and decided start a pain diary
11. Work is becoming a dread and harder to do. Co-workers and management are starting to notice…
12. Realize that I can’t just leave work because I need the health insurance coverage
13. Mr. Pibe becomes an ass and “has too much on his plate…”
14. I get tat #7… which needs about 5 sessions to finish… also dedicated to lupus. Pictures coming soon!
15. Want to stay in bed but don’t because I have the most amazing support system that keeps me ALIVE.
16. Played the MegaMillions… and lost
17. Getting psyched about the upcoming 2012 LUPUS NOW Walk– May 6 in Houston, TX. Join or donate to TEAM UNBREAKABLE.
18. I am the maid of honor for my best friend’s wedding
19. Put in two federal research grants… with more to come in the summer.
20. STILL CLASSY AND FABULOUS despite it all!

Stay tuned and take of yourself.

Posted from the Diva on the road

Benlysta Take Two

Belimumab (Benlysta) has the potential to be the first targeted biological treatment that is approved specifically for systemic lupus erythematosus, providing a new option for the management of this important prototypic autoimmune disease. (Lancet 2011; 377:721-31)

On Monday, I had my second infusion of the new “it” lupus drug, Benlysta. There are many individuals blogging about their experience with this drug, I really recommended reading up on these peeps, including LupusAdventurer. Her experience is well documented and provides an excellent perspective. Considering that I am only on infusion #2, all I can say is that things seem to be a little bit better… I am not cursing the gods every day because of the pain, or getting confused as often. Yes, there are some bad days but the frequency is not on a daily basis. I also met with Dr. Lupus during my infusion- which is always a form of entertainment for me. We are both crossing our fingers that Benlysta will help me and reduce my symptoms. With that said, here are some tips that I have learned, thus far, as a Benlysta-user:

1. Dress comfortably. You will be seated in a chair (a comfy chair hopefully)  for 1-2 hours. Unless there is a hot individual you are trying to impress, infusions are not the time to be sporting the trends.

2. Have a driver for the first two infusion sessions. TRUST ME on this one. Benlysta infusions require a pre-treatment of antihistamines (Benadryl). This is to reduce your chance of having an allergic or infusion reaction. This is not your ordinary pink pill you swallow. The antihistamine will be shot up into your veins and you will instantly feel its power. It feels like a baby heart attack at first- your chest will get tight, your throat will constrict and you will taste it (blah). These sensations do not last- it is very quick. As soon as that fades, you will experience the best high you ever had. I am not going to lie- after experimenting with non-pharmaceutical products- this was the best I ever had! You will not be in ANY CONDITION to operate heavy machinery.

3. Do not schedule a thing after your first two infusions. You will be drugged and not yourself. After my infusions, I stumbled into bed and passed out. With my first infusion, I ended up sleeping for 18 hours straight only to wake up the next morning still feeling groggy. During the second time around, I slept for a couple of hours and woke up in the middle of the night. As much as I wanted to do stuff, I could not get out of bed- I was just too groggy. What does this grogginess feel like? It feels like waking up after a crazy college night and trying to figure out what the hell happened (we have all had that moment).

4. Bring something to entertain yourself. Most likely, you will pass out with the IV antihistamine, but there is a chance you will just be hazed. Both times, I was not able to sleep. Do not try to read literary masterpiece or anything that requires many brain cells. Remember- you will be under a wonderful haze. On that repetitious note, do not have your cell phone out! You will be tempted to text or talk while being infused, and the person on the other end will not understand you. During my first infusion, I attempted to respond to some work emails. As you may have guessed, I was not very successful. My colleagues thought I took a bottle straight to the head. Yikes.

5.  Be more aware of germs and the people that carry them. Because Benlysta does reduce the activity of your immune system, you are more at risk of infections (and cancer). As a Benlysta user, more than ever do you need to be cautious of your health. Of course, this is better said than done. How the hell are you suppose to stay healthy during the cold and flu season? Try your best to stay away from those that have the sniffles or the slightest cough. Unfortunately, I caught the sniffles from someone, but it was the worst sniffles I had ever experience. It was the super-sniffles- I felt like well-beated crap with fever and all the joyous lupus-bells.

6. Consider the financial aspect. We have heard the wonders and greatness of Benlysta, but of course, it comes with a price. AND WHAT A PRICE! I was told that each infusion was worth $5000. Luckily, I have insurance that covers 90% of that… but there is still a 10% that needs to be covered. Here is a little-not-so-secret- I am no millionaire. It was recommended to apply for co-pay assistance. The pharmaceutical company that manufactures Benlysta has their own co-pay assistance, but unfortunately, because I am funded by the government I was denied. My next hope is with the Health Well Foundation, a non-profit organization established in 2003 that is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments. I am hoping to hear something very soon.

7.  Go in a with a good attitude. Yes- having lupus sucks and it is life-changing, but let’s be thankful that we are still breathing.

Life’s not about understanding or doing it right. It’s about taking what you’ve got and just smiling about it anyway.

Happy Holidays!