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.

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Walk This Way with Team Unbreakable

Houston 2012 Walk for Lupus Now is an opportunity for people with lupus and their loved ones to come together and support each other.

The 2012 Walk, Run & Live, with supporters from the entire Texas Gulf Coast region, help the Lupus Foundation of America find a cure for lupus. Over 30,000 Houstonians are living with lupus.

Team Unbreakable before the Journey

For the second year, I have had the greatest pleasure in leading (along with Vero) TEAM UNBREAKABLE.  Our team raised over $4600, ranking us number 4 in Texas Gulf Coast region! This year on May 6, I was surrounded by many others in the Houston community, including Ally from Team Ally.

Here is my picture book experience of the 2012 Walk for Lupus Now adventure:

Rise and Shine! I am one sleepy diva.

Awaiting for the others to stumble in post-Cinco de Mayo festivities

Our team mascot arrived sporting the best fashion.

Yup, I am wearing a purple tutu (custom made by my fabulous friend)

The Fabulous Vero and her family and friends

Someone stole my look!!

With the tut and the pimp cane… about to start the journey…

Few of my best friends= the greatest support system

My #1 Fan- my father, the viejo.

Vero and I mid-walk… starting to feel exhausted.

🙂

walking it out!

Big Finish!

Vero and I post-walk. This is also right before my body punished me for pushing it too hard.

Post-Walk

The walk was such a great success. I would like to thank all my friends and family for all their massive support. I could not have completed the walk without their energy and love. However, I did push myself too far by completing the walk. Soon after the walk, I became seriously ill and fell into a 20-hr coma. I was not able to move until that Tuesday! But at the end of the day… IT WAS WORTH IT!

Happy World Lupus Day

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World Lupus Day, May 10, focuses on the need for improved patient healthcare service, increased research into the causes of and a cure for lupus, enhanced physician diagnosis and treatment of lupus, and better epidemiological data on lupus globally.

This is the day that all lupus warriors across the globe stand-up, band together and show our strength. YES… it is more difficult to do XY and Z, and YES… we miss the days of when doing our own nails in that fabulous shade of purple seemed an easy task. REALLY- IT TOOK ME 2 HOURS TO DO MY OWN F-ING NAILS. MY HAND COULD NOT STOP SHAKING AND THAT STUPID WAND APPLICATOR KEPT SLIPPLING FROM MY FINGERS. There is purple nail polish EVERYWHERE!

I am going to take this fabulous moment to spread some awareness and give you the lighter side lupus (does that even exist?).  Remember that list I made about what lupus took away? Well, here is the other side of the coin:

1. Lupus gave me the strength take on anything and everything. You got something for me? BRING IT! I have no doubts that I will still be able to rock it out and survive through anything.
2. Lupus made me realize what’s important to life.  It is so easy to make a decision now, because that decision has to be made with ME and my health in mind. Yes, my Friday & Saturday nights are dedicated to my drugged-induced beautry sleep.
3. Lupus made me realize that I am surrounded by endless love and support. How lucky am I to have such a support system!?!? From my mother driving me to my infusion treatments and shoving food down my throat, to my father walking beside me at the 2012 Lupus Walk, to my sister racing me to the emergency room, to my brother checking up on me and reminding me to NOT DRINK, to my best friends smiling as I queen out, shavig my head, helping me when the steps are too high, feeding me when I can’t hold my silverware, hugging me when I need it, and etc etc- These are the people that I could not live without.
4. Lupus gave me the power and the OK to shrug the minor things off. I have lost all my hair, in constant pain, walk with a cane, have uncontrollable/involuntary shakes, have moments of dementia… why the hell am I going to worry if so-and-so is going to call me?! … why the hell am I going to worry about if my boss is pissed at me?!… why the hell am I going to worry about what to wear?!?! … why the hell am I going to worry about if I gained/loss weight?!… why the hell am I going to worry about what I look like?! I have enough on my plate.
5. Lupus gave me the power of spotting the douchebags and bastards early. Nothing scares the douchebags and bastards like telling them that you have an autoimmune disease. My brother calls lupus the “douchebag repellant”.

Here is your moment to shout to the world, spread the awareness, spread the love and hate for what lupus has taken from us and given us. Here is to one day that we all experience a cure for lupus.

HAPPY WORLD LUPUS DAY!

Posted from the Diva on the road