BITCH STOLE MY LOOK

As I have mentioned before, I lost my hair due to lupus and its treatments  starting in 2010 (click here for details). Many women experience hair-loss at differing degrees because of lupus. For about two years, I rocked my bald head around Houston (with the occasional cover-up on the cooler days or when having a fancy meal).

Rocking this look comes with some great perks… and some lows. The obvious perks include: 1) easy hair management (you shower and GO!), 2) showing off your beautiful face, and 3) showing the world that you have more self-confidence in your pinky-toe than any other long-haired woman around you. The obvious lows…. well… 1) being constantly looked at (which I didn’t mind), 2) being the topic of whispered conversations (“I wonder why she is bald…” etc), and 3) having to deal with ridiculous ignorance and stupidity (seriously, once a jackass came up to me and said: “Are you lesbian?… you have no hair so that means you are a lesbian. You shouldn’t be here.” Let’s just say he walked into my fist, and then walked out with a bloody nose. Somehow, I got banned from the drinking establishment…).

Diva note: Do not allow these lows (especially brought on by other people’s insecurities and ignorance) to bring you down. It is not worth your time or your emotions!

During my time of baldness I followed the words of my hair stylist (if you are in the Houston-area, check out these ladies at A House of Designersdiva-approved) and from my best male friend (who else would know about scalp therapy than a man with a great set of hair–check out thementoringsession): TAKE CARE OF YOUR SCALP!

Sidenote: I tried the steroid injections into the scalp by my dermatologist (a total of 13 into the scalp in one sitting). But after 5 sessions, I was not seeing any results!

I became an advocate of taking care of my scalp. I invested in great shampoos and condition (check out Nioxin products). Monthly, I visited my hairstylist for a buzz-check and for a treatment of Nioxin Scalp Renew Dermabrasion Treatment. This treatment is like a facial for the scalp, can only be done in the salons, and recommended for use every 30-45 days. I recommend also checking out Nioxin Diamax, a leave-on treatment that can be used with the Nioxin 3-part systems for thicker, denser-looking hair.

Nioxin, known for products for thinning hair, has taken the science of skincare and applied it to a new at-home hair-thickening treatment, DiaMax. The intensely hydrating formula—which contains niacinamide and panthenol, ingredients also found in some of the best skin-saving creams–directly infuses each strand with healing, strengthening, and protective properties for plumped-up, thicker locks (nioxin.com; $50). [credits: Christina Han; W Magazine]

By the beginning of 2012, I have noticed my hair was growing back AND thicker! This is great news even if I still have a bald spot in the back of my head (about the size of a fist). My hair still tends to abandon ship when I am going through a flare. I talk about how to cover these “character” spots in a past post: Methotrexate + Benlysta= ?? On the real, I certainly do miss my no-fuss-hair-less morning routine!

January 2012 with a dear friend. My hair was growing back blonde!

After loosing your hair, you come to realize that you are more courageous in choosing hair styles– because if you don’t like it, you know you can always shave it off and still look fabulous! I was rocking my own personal style with hair– half head shaved while growing out the other side. I loved my ‘do and was certainly the only-one rocking it in the City of Houston (…where the long-haired blondes and brunettes roam…).

April 2012

While watching E! Fashion Police (a diva-obsession), my auntie Joan Rivers was making a comment about Miley Cyrus’ new do. I couldn’t believe my eyes- that BITCH STOLE MY LOOK!

September 2012

Damn the man! <Slapping Hand on Forehead> NOW, in addition to receiving the usual “I love your hair” comment, a statement of “It looks like Miley Cyrus” follows!  

Which brings me to my quote of the day:

Imitation is the greatest form of flattery! 😉

Stay Fabulous!

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.

Image

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!

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!

Picking your doc

A great post from a fellow warrior…

Mind Body 'N Food

How can we properly evaluate the quality of our medical care?  How do we know if a doctor is the right match?

Over the past few weeks, I’ve found myself spending a great deal of time at doctors’ offices.  In an effort to feel better, I’ve sought the help of a number of specialists.  Each time I see a new doctor, I am eager to find out what news they will provide me with about my illness, and what suggestions they will make about treatments.  Many doctors have given me great advice and guidance, while others have not.  Some doctors spend time with me, and show genuine concern for my health and list of questions.  Other doctors rush me out the door after my allotted 15 minute appointment time is up.  What I’m realizing is that it takes time, patience, and research to find a doctor that is the right…

View original post 625 more words

Flan for Lupus

First a little background: September is normally my favorite month solely for the fact that I was born on the 8th. As a true diva, I take pride in my birthday month and usually have celebration plans that last the entire month. This is a very girly thing to do… I know. For September 2012, I spent over half of the month in the hospital- 2 different stays; both for lupus-related events (heart, lungs, and kidneys), overlapping my birthday! I do not want to bore you guys with details, but I came out of September alive and still breathing. Now that I have freedom from the hospital, I have so much to catch up  on, including new posts! BUT I CANNOT FOCUS (maybe because of my lupus CNS or simple procrastination). So, I am taking cue from my neurologist who suggests that I should conquer tasks in little chunks. FYI- a very helpful tip when dealing with lupus fog moments. 

Now to my point (finally): I came home from the hospital two weeks ago and awaiting on the table was this delicious vision: FLAN!

Image

This flan was homemade from my amazing Tia, who is from Mendoza, Argentina. For as long as I can remember, flan was the first step of the solution to any problem. As I was savoring every bite of my flan, I secretly wished, “Flan is the cure for lupus“. 

ARE YOU KITCHEN-FRIENDLY?: I have no clue on how to make this, but I did find an Argentine recipe. I tried asking my tia her recipe but it involved, “a pinch of this”, “a dash of this”, “heat until its the color of ____”. Frankly, my head hurt with the thought of trying to recreate her recipe for this blog. 

Why do I even ramble about flan? 

First, because it is FU*$#ING AMAZING!! Second, to let you guys know that although we may suffer a lupus-set-back, we can still experience joys in our life. For me, it is as simple as enjoying a homemade flan from my  Tia. Seeing the flan on the kitchen table reminded me of how much I am loved and supported by those around me. And lupus cannot take that away from me. 

Stay Fabulous!

The Diva