Hydroxychloroquine/ Plaquenil Update!

Article below derived from Lupus Foundation of America’s Blog.

http://www.lupus.org/blog/entry/hydroxychloroquine-shortage-update-october-2015

Oct. 05, 2015

Hydroxychloroquine Update – October 2015

by Sarah Stothers, RN, BS, Lupus Foundation of America Health Educator

Recently, there’s been growing concern over generic drug price increases in the news and on social media. We at the Lupus Foundation of America have felt and been enveloped in this wave of concern. Our organization has been tracking the cost and availability of hydroxychloroquine (Plaquenil®) since June 2014. Initially, there were widespread reports of shortages and difficulty accessing the drug, but now the primary issue is the spike in price.

The Lupus Foundation of America is aware that many of our constituents are unable to afford the high cost of the generic form of the drug, hydroxychloroquine. We are concerned that constituents may stop taking the drug or ration the drug without their doctor’s knowledge. This is can be very dangerous.

It is extremely important that lupus patients take hydroxychloroquine (Plaquenil®) as prescribed. Medication adherence prevents disease flares and other complications.

“Hydroxychloroquine is the mainstay of lupus therapy,” according to Michelle Petri, MD, MPH. “It prevents half of lupus flares, reduces renal and CNS lupus, reduces blood clots in half, reduces future seizures, diabetes and LDL cholesterol, and improves survival. I call it ‘lupus health insurance.’”

Currently, there is one brand name drug manufacturer producing Plaquenil® and four generic drug manufacturers that are producing hydroxychloroquine.  All four generic drug manufacturers are no longer reporting a shortage and are meeting demand.  However, we have had several reports from people who are unable to pay the high cost of the drug. As a result, some individuals are no longer taking it or rationing their medication. We urge all people with lupus to speak with their physician if they are having difficulty accessing the drug.

Here are some actions people with lupus can take to obtain the drug at a more affordable price:

  1. Speak to the prescribing physician about possibly finding a lower-cost alternative treatment option.
  2. File an appeal with your insurance company if the drug has increased in price from last year’s plan. This usually has to do with moving the drug up a tier in the formularies. The insurance company may agree to move the drug back down to its previous plan year’s tier, which can drop the cost. You can also speak to your insurance company to see if switching to a different plan is possible.
  3. Compare prices. Some people have noted that the brand name drug, Plaquenil®, is cheaper than the generic form of the drug, hydroxychloroquine, with their insurance. In addition, constituents can compare the prices at various retail pharmacies to find their drug at a lower cost. There are a few websites, like GoodRx, that can assist with this.
  4. A few websites with resources may also be of assistance:

The Lupus Foundation of America is sharing this information because we want to ensure that our constituents can access and afford the medications that they need. We are in the process of contacting the generic manufacturers that produce hydroxychloroquine to better understand why there was a shortage and now a significant price increase. Our Advocacy and Government Relations department is pursuing several avenues to address the problem.

We believe it is important for us to represent the lupus community and ensure that everyone understands why the prices of their drugs have increased so dramatically. If you have questions or need any information, please contact our health educators through this form, or by calling 1-800-558-0121

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Best Lupus Blogs of 2015!

I am humbled to announce that Undefeateddiva.com has made healthine.com list for Best Lupus Blogs for the second year in a row.

When I initially started writing I did it to help people to not feel alone in their journey. I quickly realized I wanted to not only help but INSPIRE. I have had the most beautiful journey since. Thank you to healthline.com for seeing this and helping my vision come true by giving me a bigger platform to reach.

Check out the list here Best Lupus Blogs 2015

With love and humility,

Undefeated Diva

  

Getting to know the new me…

Sometimes it’s the journey that teaches you a lot about your destination.

I have searched for the eject button on the recent path of my journey, to no avail. In the years since my diagnosis I have done what I always do, plow through, head held high, never looking back. As of late that methodology has not been as comforting. Life’s lemons are still sitting on my porch waiting to be made into it’s potent beverage. I have stared at them not quite understanding what to do with them, as my normal kick ass, straight forward approach has had me coming up drained and in the same place. Stagnant and drained are pretty substantial words to describe my current state of being. I have pondered and scoured for an answer to the “why” and it wasn’t until several days ago that I found the answer.

Let me be clear, my friendship with my chronic illnesses is nothing new. We are several years in and I thought that I had gotten a nice hold on them. What I wasn’t ready to admit to myself or the world around me was that, I no longer knew who I saw in the mirror. She looked familiar, she sounded familiar, but all in all not the same person. Really, it should have come as no surprise to me but it surly was. As I was in my beautiful world of deep cleaning and ridiculously loud music this week, the answer to the why was so very clear.

I no longer knew myself.

For someone that knew who she was and where she was going in life at a ridiculously young age this was a catastrophic blow. It all made sense though. The feeling of being lost and alone even when I was surrounded by the people that loved me most. The feeling of unease and uncertainty when I had the best support system someone could ask for. It all made perfect sense. When all you know is this semblance of a person that handles life with a vigorous fire that can never be snuffed, then you find yourself confused and depleted from life’s lemonade, you can’t help but feel shaken down. Right now, in my life I am getting a shake down. One day I woke up and I was in another body that had unimaginable pains, unclear thoughts from what could only be described as a foggy state, and a back bone that no longer stood straight. Who was this person? How did this happen?

Getting diagnosed wasn’t the hard part, reacquainting myself… well, with myself has been the most excruciating experience. Trying to do this while living life on life’s terms, well now your asking for too much. Having to work, be a wife, a daughter, and fuck it a productive member of society… All the while trying to understand what happened to you… Now that’s a damn epic mission. Nevertheless, I realized it and all of the missing pieces came together. I hadn’t realized that it was going to be a grieving process or even a process period. The vibrant woman was now a slower moving version of who she used to be. A more jaded and fatigued version of who she used to be. The woman that looks back at me in the mirror is tired, depleted, and honestly a little angry… Not the old me that was the fire spitting free spirit with endless energy. Can I place all of the blame on chronic illnesses? Well sure I can but that’s not who I am. I take responsibility for my actions and my part in the situation. I could have done more about my illnesses. I could have done some more soul searching. In the end, I won’t look back at what I could have done, to me thats a waste of perfectly good brain cells that I should preserve for days that the brain fog sets in.

So where do I go from here I asked myself. Well to the beach of course! So I find myself at the beach, searching for answers to questions I thought I already had the answers to. I am searching for answers and way to steer this new way of life for me. To figure out how to still be that firecracker powerhouse that is determined to teach the world all the while possessing a body that does not match the soul.

What I have come to realize in all of this is, this is normal guys. I am no different than anyone going through any struggle. It is real, it is normal, and it is going to be O.K. Now I just need to find sticky notes to help with the brain fog and some great heels!

Until Next Time.

 

XOXO,

Undefeated Diva!

Even the fiery advocate gets tired…

Man has got to know his limitations. Clint Eastwood

“Oh you look better”, “you don’t look sick”… Or the ever agonizing look of pity or question of whether you are faking it…

I was ashamed of myself when I walked out of the doors of my school today. Sunglasses on, bags on my shoulders, I just left after what should have been me waiting to speak to my advisor. See, because even the fiery advocates get tired of advocating sometimes.

Unfortunately, this semester of college has been one of my toughest. I have been in the middle of a flare up of epic proportions. Although I have my good days, those have been farther and farther apart. The good days are actually bad day’s that I have medicated myself, slept for 2 days prior to them, yet still take 2 hours to get dressed. Often times I wonder if I will even make it to class most Wednesdays, never really thinking about the on-line classes I can’t seem to wrap my brain around due to the epic brain fog. Today I had the option of sitting with my advisor, which happens to also be a current professor of mine. I sat while she spoke to another student and then it hit me. I have fallen behind in her class and here I was going to sit in front of her and discuss my future. Although my face had make-up on (miracles do happen), I was put together, and standing upright she could not see the turmoil and pain I was in. The impending migraine that was threatening a night of torture and the fact that the sheer touch of my shirt to my skin felt like shards of glass. Nor would she be able to tell that my body was threatening me with the possibility of passing out from the dizziness I have had for two days. So as I sat there and watched her speak to another student, I made the decision I was allowed to say I AM DONE… for the day and leave. For a natural born advocate like myself, it was a realization. The realization that I had “given in” to the pressure of stigma, that I talked myself into walking out when I hadn’t even given her the chance to talk to me. What I did do though, was show myself that I know my limits!

Every person has their limits. Today, I knew that I had reached mine. I knew that a look from her or too many questions would have turned me into an angry and defensive me. I would have been no advocate at all, I would have been a stereotype… So I left. As I felt defeat walking out the door, I felt no more as I drove over the beautiful bridge met by sunshine and clear waters in my town. I knew I had done the right thing, which was advocate to myself and for myself that today was not the day.

So the lesson for today… Is even the strongest of us advocates gives in. Sometimes it’s ok not to “advocate”, if you know that really you are causing more harm than advocacy.

XOXO,
Tired Undefeated Diva

2014 Top Lupus Blog!

There are moments which mark your life. Moments when you realize nothing will ever be the same and time is divided into two parts, before this, and after this. 

-Unknown-

I saw this quote a multitude of times this week and although I felt I understood it,  there came a moment this week that I truly realized I didn’t know the magnitude of it until that very moment things changed. I disappeared for a few days this week on a quest of my own. A quest of solitude, enlightenment, and adventure. To say that I found it all would be an understatement of epic proportions. Not only was I blessed to have had the opportunity for a free getaway, but during that getaway I was blessed beyond words. I was blessed to know what it is like to be “heard” or “published”(in a way). 

During my adventure I found a little piece of me that I have put on pause for some time, that piece of me that was daring beyond boundaries and fear. So one day I ignited her, that part of me that has been ready to take on the world since the womb. Wouldn’t you know that my questions and hard work would pay off in dividends. 

I am beyond humbled to announce that you are now reading one of 2014’s TOP Lupus Blogs from Healthline.com! I received the email on Tuesday afternoon and it rendered me speechless! The editors will have it up in the next couple of weeks, but made sure to include the embedded photo below so that I could include it on my blog. I can not express how much it means to me to be able to advocate and share not just my story but that of millions of others on a MUCH bigger scale. 

Thank you to all of you that have followed my journey from day one and that follow my writings now. Above all, THANK YOU to my A-Team… for always having my back and kicking me in the ass when I need it! 

XOXO, 

Rejuvenated Undefeated Diva 

 

 

http://www.healthline.com/health-slideshow/best-lupus-blogs#1

 

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