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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Sleepless Nights

There is nothing worse for me than a sleepless night. The tossing and turning, the hot and cold, the sweating, the shakes, the up to use the bathroom several times, the racing heart rate, oh and let’s not forget the straight up just not being able to close your eyes… Okay and the continual chanting in my mind “I will not snack, I WILL NOT SNACK!”

Anyone guess,yet?

Love you prednisone!!

Xoxo,

Irritated/Sleepless Lupie! 

New Medicine Research!

AstraZeneca lupus drug produces positive results in trial
LONDON | Mon Nov 17, 2014 7:02am EST

LONDON (Reuters) – An experimental lupus drug from AstraZeneca significantly improved the symptoms of lupus in a mid-stage clinical trial, boosting prospects for a medicine the company believes could become a major seller.

Only one new drug — GlaxoSmithKline’s Benlysta — has been introduced for lupus in half a century, underlining the difficulties of tackling the disease that causes the immune system to attack joints and organs.

AstraZeneca’s sifalimumab works in a different way to Benlysta by targeting interferon, a protein involved in inflammation.

In a Phase IIb study, details of which will be presented at the American College of Rheumatology (ACR) annual meeting, sifalimumab improved symptoms at all doses. However, there was an increase in patients reporting Herpes zoster, particularly at the highest dose.

Sifalimumab is one of two drugs for lupus being developed by AstraZeneca’s biotech unit MedImmune. The other is anifrolumab, which blocks interferon more comprehensively. Early data, also being presented at the ACR meeting, suggests this second drug may be more effective.

Bing Yao, head of respiratory, inflammatory and autoimmune medicine at MedImmune, said the company would decide which of the two drugs to take into final-stage Phase III trials after getting Phase IIb results on anifrolumab next year.

In May, AstraZeneca predicted the lupus medicines could eventually generate annual sales of around $1 billion. It made the forecast as part of a long-term sales projection in its defense against an unsuccessful $118 billion takeover bid by Pfizer.

AstraZeneca will give a further update on its new drugs at an investor day on Nov. 18, just eight days before Pfizer is allowed to make a new bid under British takeover rules.

(Reporting by Ben Hirschler; Editing by Mark Potter)

» Next Article: Egyptian court drops case against Mubarak over 2011 protest deaths

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I dare you say something!!!

“Not guilty by reason of Prednisone”
Gorgon

BOOM! You have a flare up, you stub your toe, you have chest pain, body aches. Just pick a complication, because 9 times out of 10 the treatment plan is still the same…Drum roll please….. STEROIDS… Most often Prednisone, but steroids come in several shapes and dosages.

You get sent home and reap the reprucussions of the side effects, of a medicine that is keeping you alive. The list of side effects to steroids is endless, but for me I cringe at the thought of the wrath. The silent hunger that creeps up on you and wakes you out of a dead sleep (when/if you can actually obtain it). A hunger that claws at your insides like you have not eaten in days… When honestly it has only been 2 hours! This of course is only one of many side effects. For me, a short fuse would not begin to describe the C4 loaded box in my chest. I know it’s there, I know why I am emotional, but hell if I can control the explosion once it is ignited; most often over nothing… *BOOM*

Then as the dust settles, if you are any type of human being you assess the casualties. Often times leaving in it’s wake it’s share of emotional hurt or pain. I am not saying this is right, but at least I am human enough to admit the truth. This is the problem ladies and gentlemen, often times people say they are being “real” when in all honesty it is the “real” they want to portray. Well, me, I am here to give it to you straight. If you don’t like it, well thats okay. I would be doing everyone an injustice if I sugarcoated even a word in my blogs. The down and dirty, good/bad/and sometimes ugly truth, SHIT HAPPENS and chronic illness SUCKS…

So to make me happy… Tonight as I wrote this up, I partook in a mini fiesta in my kitchen! I’ll give it to you guys, it did in fact look like I was hiding something; As I stood in the corner of my kitchen with only the light from my iPhone flashlight, going to TOWN on some amazing chips and dips… I laughed, because I sure as hell had NO SHAME! I had ignored the hunger for so long that the hunger pains actually ensued. My stomach started cramping up and the nausea kicked into hyperdrive… SO I had a choice… Eat the chocolates in my nightstand (resealable bag!) or get up and grab something more.

I will admit, I was craving the ultimate Philly Cheesesteak at that moment. In the end, I ended up with my small little fiesta and boy it was a party in my mouth! My fellow spoonies out there know what I am talking about. The first bite of whatever meal or snack you have when your on steroids is like nirvana. You could be eating a damn burnt hot dog and it tastes like the best meal in the world! My chips and dip did just that. The first bite of my chip, I threw my head back and “mmmm”. It sounds insane, because frankly it is. How could a medicine that is supposed to help you stay alive wreak so much havoc on you. Haven’t you been through enough? I mean for heaven sake you are on the medicine because you are not well.

 

NEVERTHELESS… Exhibit A below is a picture of my 12:17am fiesta! It hit the spot so well, I am thinking I may actually get some sleep tonight! SO, to my fellow spoonies out there suffering from midnight, midday, mid-second hunger/craving pains… I’VE GOT YO BACK! Ain’t No Shame In My Game! Eat, not to the point of being sick… but eat. I snack regularly, I eat fruits for snacks such as bananas (to keep the Potassium balances (Yet another problem from steroids)). I also get the 100 cal snack packs and although I may eat more than one, it is better then eating a damn Philly at 3 am!

In the end, I dare someone say something to me. I almost beg for someone to say something because I would use the opportunity to ask this…

What would you do if the medicine that was supposed to save your life, is also killing you slowly?

(YOU EAT CHIPS AND DIPS! BOOM)

🙂 Good Night and sweet dreams!

 

XOXO,

ME!

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