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.


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!

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!