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.

I am not my hair- introduction

“Hair loss occurs in 45% of people with lupus at some time during the course of their disease.”

Most frequently the hair loss occurs at the onset of the illness, and may be one of the first symptoms of the disease recognized by the person. Most often, the hair loss is from all over the head, but sometimes the hair falls out in patches. When the disease is brought under control, the hair should grow back. Sometimes there is a rash in the scalp—usually subacute or chronic discoid—that interferes with the hair follicle. In this situation, the individual is left with a permanent area of alopecia. Drugs used to treat lupus, such as prednisone and immunosuppressive therapies, also may be the cause of reversible hair loss.

Good-bye long hair!

I use to spend so much $$$ and time/effort on my hair. My hair use to be my identity and my creative outlet. OK- so maybe the masses were not jealous of my hair and maaaaybe they weren’t saying “Geez, that Diva has great hair!”  As much as I fought with my hair every morning, I still loved it and ROCKED it.  I noticed my first bald spot in May 2010 and didn’t think much of it. “No worries- I can hide this.” Before I knew it, my bald spot spread like wild-fire! I was leaving traces of hair everywhere. Showers were torture as I could see strands going down the drain. I was loosing hair in massive amounts. The strong strands that survived the massacre were those in the front of my head. At the time, I was with my ex, Mr. Aguinaga. We were together for 9 months at the time of my first strand departure. By the time the last strands were hanging on for dear life, Mr. Aguinaga disappeared into the arms of another woman who was healthy (more details to come.. it’s juicy). I knew Mr. Aguinaga was never going to be good enough nor strong enough to be with me- more on that to come.

There came a point when the inevitable had to happen- I had to shave my head. I remember the day my favorite stylist picked up the razor. I cried as soon as the razor hit my scalp (luckily- I had my one of my best friends with me- thank you Mr. Carmona). Through my tears I thought: I will never be the same. I knew that lupus was going to bring out the best in me by pushing me outside of my comfort zone and revealing my strengths.

I have an arsenal of wigs and scarves. Wig shops became a bi-monthly visit. I was not worried about the shopping expense as this was now a medical-expense. I bought hair and submitted receipts to my insurance company and for those not covered will be on my tax return. (Perks of a chronic disease, eh?) Over time I gained knowledge on the world of wigs and became an expert (“Wig knows wig“). I learned new terms (I had a “wig-face”- meaning all the wigs looked great on me), and learned to stay away from all natural elements (water, fire, and air).  Each wig had a name and a personality: Streak, Kikki, Lolita, ‘Nita, Bambi (my blonde one). My wigs were my new accessories and together we were fooling everyone. Joke is on you world!

Even with all the fun I was having with the girls,  there was one thing that bothered me: THIS ISN’T MY HAIR! It was exhausting just to make sure the damn thing stayed on my head and straight I would spit my drink out when men would come up to me at a bar and say “I really like your hair”. I almost want to respond with: “Well, if you like it so much, here ya go!” (As I whip it off my head- That would not be too classy of me). In upcoming posts, I will talk about how men react to my hair-situation.

Will I be bald forever?

Thanks to daily pills of prednisone, 15 steroid shots to my scalp once a month, and  calming of the lupus symptoms, my hair has started to grow back in- BUT not all at once. Of course, I have some lazy follicles that are taking their time to grow back in and, unfortunately, I do have some scarring which will result in permanent bald spots (i.e., scarring alopecia). As I had mentioned before, I am currently taking a form of chemotherapy, methotrexate, as an injection once a week. Like other chemotherapy, a side-effect is hair loss. I started chemo at the beginning of this year as a last-chance treatment option. When Dr. Lupus explained the side-effects, I laughed when he said, “oh, you may loose your hair.” I responded with “Doc, I have already crossed that bridge!” My experience with methotrexate in regards to hair loss has not been too bad. Actually, I haven’t really noticed- because I am keeping my hair short these days. Every once in awhile, when I rub my hand on my scalp I see little hairs breaking free- but I know they will come back. 😉 For the majority of patients experiencing hair loss, the hair does grow back once you start to feel better. Rarely, does the flare-up cause scarring, which prevents regrowth.

Wanna hear the perks of being bald? Stay tuned for a fantastic list in a future post.

I am not my hair- Going on the “cover-up” strike

A couple of months ago, I went on strike. Part of it was because of the Houston-heat– it was just too hot to be wearing hair. I was already having hot flashes from the steroids and chemotherapy! The main reason was because wearing the hair wasn’t suiting me style. My style is to be true to myself– to be a fabulous diva no matter what. Wearing hair felt like I was ashamed of myself and denying my true fabulousness. Don’t get me wrong- wigs are great and you will see me wearing one from time to time (especially on cool nights out). I am glad that I lost my hair- because I learned a great lesson- I learned that I am not my hair. Physical features do not define who I am. I am me and beautiful bald. I recommend you, my fellow patient, to put down that wig/scarf and let loose by walking proud with your bald head.