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!

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

First weekend of 2012

Happy New Year!

With the end of the first weekend of the new year coming to an end, I ask you this: “What fabulousness did you get yourself into?” I will give you a moment to reflect… go ahead.

Now, don’t you dare feel bad if your response is along the lines of “nothing”, because I was stuck in bed with the f-ing FLU ! Yes, I had my yearly flu shot but apparently there is some wacky strain going around Houston (by the way, it was 75 degrees this weekend and I was stuck in bed).

image

Of course, Dr. Lupus demanded that I pay him a visit. “I worry about you,” was his first comment when he saw my snotty face. I am so grateful to have such an amazing partnership with my doctor. After his examination, he gave me the bad news’ “Brace yourself, you are going to be in a lot of pain the next couple of days.” Eeek! I immediately asked him: “What’s the maximum daily dose of vicodin, again?”

So, back to the original question: What did I do during the first weekend of 2012? Well, obviously I stayed in bed but I also did the following:

1. Deep drug-induced sleep= crazy dreams.

2. Finding the right position to control pain… I am in toooooo much pain

3. Try to keep from overdosing on acetaminophen (theraflu, vicodin, tylenol, etc- so to sleep through the pain)

4. Resist from drinking wine Saturday night in bed

5. Watch re-runs of shows

6. Falling asleep during the re-runs

7. Eat a whole bushel of oranges- vitamin C overload! I devoured those suckas like it was the cure…. almost ate the peel out of desperation.

8. Drink a whole bottle of orange juice- drank it from the bottle like a savage.

9. Ignore a facebook friend request from Mr. Aguinaga (ooh silly man)

10. Eat a pint of ice cream (it soothed my throat)

Right now, I’m scheduled to have my Benlysta infusion tomorrow… but I will have to cancel if I am still too flu-ish. I am crossing my fingers that I wake up feeling better tomorrow (as I sip the last drip of Thera-flu).

Good night!

Posted from the Diva on the road

Research news from the LUPUS FOUNDATION OF AMERICA

Keep up-to-date on the latest research on lupus.

In each category below, you can find summaries that explain the importance of recent research studies. All summaries provide access to the article abstract; select summaries provide access to the full journal article.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=3065&zoneid=76

As suggested by the lupus foundation, feel free to discuss any of this with your doctor.

Remember to actively participate in your medical decision-making with your doctor. That means ask your questions and express your concerns. At the end of the day, as the patient, the disease affects you and you are the one taking the treatments. Therefore, your medical appointments should serve as a setting for great collaboration between you and your doc. This is called shared decision-making.

If you want more information regarding shared decision-making, please let me know! I have an extensive bibliography on this topic, as this is my field of research.

Posted from the Diva on the road

I Couldn’t Help but Noticed That You Coughed… Now Stand Still So That I Can Spray You Down With Lysol

This morning I woke up to the very annoying sound of my alarm clock (for the record, I have never encountered a pleasant-sounding alarm clock) and I started my daily morning routine:

  1. Slam the snooze button (many, many, many times)
  2. Have the following thoughts: “Why am I still so tired?!”, “Did I even sleep?!”, and “Damn it, I can’t move!”
  3. Accept that I will be tired regardless of sleeping many hours.
  4. Debate the reasons why I need to get out of bed (i.e., can I miss work today?)
  5. Start slowly moving every digit, joint and muscle so that I can get out of bed- 30 minutes will go by.
  6. Say “#&$^@!” as soon as I start to attempt to walk

This morning was a bit different… I felt a bit more on the crappier side than usual. This feeling was a continuance from the day before. Yesterday was the first time in many weeks that I called in sick to work. I could not get out of bed and I felt like pure shit… AND I was coughing. This morning I had to get out of bed because I had an appointment with my wonderful, tough loving rheumatologist, who has become my primary doctor and faithful leader of my team of doctors (hence forward will be known as Dr. Lupus). I knew I could not give up this appointment- even if I felt like caca-on-the-sole-of-a-shoe. I was so short of breath, my chest was tight, achy joints, and had a nice rash going (the solution to all: 2-parts steroids; 1-part vicodin).

Dr. Lupus was not too happy to see me coughing. While examining me, he asked me the most profound question: “Do you feel like you are sick or like a flare?” WHAT?!? MY DOCTOR IS THE RIDDLER! I looked at him and responded with “umm… like I am sick?” A relief came over him: “Good. I would rather you be sick than having a flare.” He is a caring physician.  As per usual, The Riddler approaches my case with several possible explanations. Today’s explanation: 1) I may be experiencing some lung toxicity from the methotrexate (… another side effect?!?!?…) or 2) I am sick with some virus- I caught a bug from someone else (agghhh!). He thinks it is most likely option 2 and there is nothing I can do about it. He gave me a soft, caring smile and said: “Expect to experience some crappy days.” Here are the good news that comes out this: a) I won’t get a fever because of the loads of tyelonol/vicodin I take daily and b) I get to skip the methotrexate tonight! HOORAY! I just freed up my weekend of vomiting, nausea and overall feeling of death caused by this lovely form of chemo. Too bad, I am sick with some bug. So pretty much, I will be feeling the therapeutic benefit of the drug without the side effect. THIS WAS NEVER A POSSIBILITY BEFORE! Side note: How about this concept- a drug that can be prescribed where we can just feel the benefits.

After getting poked (twice) by the phlebotomist who was not happy that it was Friday, I was on my way back to my bed. I woke up from the vicodine-haze and immediately thought “someone is to blame for my crappy feelings“- but who? Who was coughing at the office? Did that cute Barista have the sniffles? More importantly, do I need to carry a can of Lysol everywhere?

I can imagine the typical scenario:

The culprit: *Cough* *Cough*

The Diva lifts her head in fear and looks around (imagine the scene from Jurassic Park- where the water in the glass starts to move with every stomp)

The culprit: *Cough* *Cough* *Achoo* *Sniffle*

The Diva finds the source of destruction and slowly takes out the can of Lysol from her over-sized purse. She shakes the can as she slowly approaches the culprit.

Diva: Excuse me.

Culprit: Wow! Let me just say that you are gorgeous. I can tell you are fabulous

Diva: Stand still, you bastard! How dare you cough around me!

Diva sprays the culprit from head to toe. Once the can becomes empty, she turns, drops the can on the floor, and walks away leaving the culprit dead to any germs.

END SCENE.