Monday, June 29, 2015

Traveling in style - taking my lupus medication on the go!

The Zoe Pillfold: slim, stylish, and discreet. Perfect for a night out, or a weekend away. Traveling with my pills to the LFA's Advocacy Awards Dinner never felt so swanky. 

My current anemic status forces me to take my iron pill at mealtime. So if it's out to dinner I go, the pills have to come, too. Thank goodness I don't have to sacrifice style for adherence! 

Friday, June 26, 2015

LFA's Capitol Conversation - 21st Century Cures Act, dinner, drinks, and decisions to cure lupus!

I had the honor of accompanying my friend to the LFA's National Advocacy Awards Dinner last week. We had a wonderful time! It was a great night for lupus advocacy, and the event featured a refreshing panel discussion with leaders from Congress, Federal Agencies, Industry, and Research - dedicated, passionate high-level people who were there solely to discuss the need to accelerate cures for lupus and other chronic disease. You want to talk about inspiring!? 

These folks couldn't say enough about the crisis ongoing in the land of Lupus - in research, development, and delivery. The featured panelists were as follows: 

The Honorable Fred Upton, U.S. House of Representatives, Chairman, Committee on Energy and Commerce.

Congressman Upton is responsible for launching the 21st Century Cures initiative, a multi-year effort to bring researchers, industry, and patients together to speed up the discovery, development and delivery of life-saving cures. Not only that, but Congressman Upton has a very personal connection to lupus. His wife Amey has lupus, and his sister-in-law died of complications from lupus. He is as dedicated as they come - and it was an honor to bump into him at the reception. 

Francis Collins, MD, PHD, Director of the National Institutes of Health.

 Dr. Collins was so fired up about the current possibilities in the medical cures arena, you could hear the enthusiasm and passion in his voice when he spoke. He was great - just the kind of guy you want in charge of biomedical research to cure diseases like lupus! 

John J. Castellani
President & Chief Executive Offices
Pharmaceutical Research and Manufacturers of America

Mary Woolley, President & Chief Executive Officer, Research!America

And one of my favorite lupologists - Dr
Susan Manzi, MD, MPH, Chair, Department of Medicine, Allegheny Health Network

The panelists, along with moderator Chuck Todd, of Meet the Press

Here we are with our new friends Shawnda and her husband. Shawnda actually advocated that very day on Capitol Hill. She said most of the representatives she met with were very receptive to what she had to say about lupus, and to the 21st Century Cures Act. Here's hoping the legislation gets passed! 

You can check out video highlights from the event here, and stay tuned for Monday's "Pillbag pictoral" of my evening out. My pillfold had to go with me (I had to take my iron pill with dinner that night), but I didn't want to sacrifice style. Enter the chic, animal print Zoe pillfold. See you back here on Monday!

Wednesday, June 24, 2015

Make Great Light Giveaway - Winner Announced!


I’m excited to announce the winner of the Make Great Light giveaway today! Thanks so much for all of your entries, though it was so hard to pick just one lucky winner. It became quite clear from the entries submitted that many people are significantly affected by fluorescent lighting - so know that you are not alone. Many of you complained of headaches, fatigue, eye strain, dizziness, rashes, and overall feelings of malaise. These are exactly the symptoms that Make Great Light is trying to prevent. How wonderful that someone is doing something about it!

Without further ado, the winner of the Make Great Light 2015 Despite Lupus giveaway is...Latishia! Look for an email soon with instructions on claiming your filters, Latishia, and thanks so much for sharing your story.

For those of you who submitted an entry, but did not win, Make Great Light is offering a 20% discount on orders over $40 through June 30 with the code LUPUS20. This would be a perfect opportunity to approach your employer about the lighting in your workspace, and share with them the options that Make Great Light has for improving your work environment. It never hurts to ask (or educate), and your employer might surprise you by accommodating your needs. I know the folks at Make Great Light would be happy to discuss the various options available. And if you have success with your employer, be sure to report back. We love workplace accommodation success stories!

And a big thank you goes out to Make Great Light for sponsoring the contest, and for making such great lighting products. So glad there's a solution out there to combat that nasty fluorescent lighting. Maybe it should be KNOW Lupus, NO Lupus, and NO Fluorescent Lighting!

Friday, June 12, 2015

Managing Photosensitivity with Light filters + A Giveaway!

Now that summer is here, most of us are starting to spend more time outdoors. Hello, summer! Hello, sunshine! With that extra time outside, most of us know to take necessary precautions against UV exposure and glare with appropriate clothing, hats, eye protection and skincare in order to avoid a flare caused by the sun.

But for many, photosensitivity is a year-round, indoor issue, too: fluorescent lighting at home or in the office can cause fatigue, eyestrain, headaches, and more.  I distinctly remember having a “lighting” conversation with my employer years ago when I worked in an office. It’s a real issue - one that I’m so happy to see now has a solution!

Last month I was contacted by Make Great Light about their filters for fluorescent lighting, and I think their products sound really interesting. I haven’t tried the filters yet, but here's what they do:

*Eliminate all fluorescent light glare, which is a major cause of eyestrain

*Absorb UV radiation, which is a known Lupus flare-up trigger

*Output full spectrum light

*Color balance and correct light

Make Great Light has a cute, easy-to-understand video that gives a great overview. Check it out:


The filters come in two options – tube covers that slide over a traditional fluorescent light tube, which would be great for an office or basement, and panel overlays, which are a big sheet that can be placed on the bottom of a fluorescent fixture cover, or actually cut to size for any light fixture at home!

I’m happy to announce that Make Great Light has offered to provide either a set of tube filters or an overlay panel to a lucky Despite Lupus reader!

Here's how the give-away will work: 

Leave a comment or send an email to, and give us details about your flourescent light exposure - where in your home or work it happens, how many hours per day, how it affects you, and your email address. We'll accept entries between now and Sunday, June 21st. We'll then pick the winning entry, and announce the winner later that week. 

And for those of you eager to try the filters right away, Make Great Light is offering a 20% discount on orders over $40 through June 30 with the code LUPUS20. Check out their website here, and be sure to send us your winning entry!

Wednesday, June 3, 2015

Plaquenil shortage and price hike: the saga hits home for Despite Lupus!

Thanks to all of you who have written in or commented about the rising cost of our beloved plaquenil. It's so helpful to compare experiences, and to read about the real costs incurred by real patients across the country. While it doesn't make the price hike any easier to swallow, it is comforting to know that it's not just one pharmacy, insurance company, or region that's affected. It's a nationwide problem, and one that I hope is resolved soon!

It was finally time for me to renew my own plaquenil prescription, and while I was dreading the increase, I was at least prepared for the sticker shock.

Because of the price jump, I knew I wanted to call and speak to a pharmacist about the renewal, rather than just using the automated service. I needed exact dollar amounts, and I wanted to know my options. And in fact, that's exactly what the call yielded.

After explaining the supposed price hike to my pharmacist over the phone (of which she was unaware), we waited for her computer to spit out the numbers. But I didn't have to wait long, as her sudden gasp and empathetic "Oh my gosh" gave away the results. (Somehow, her own shock softened the blow!)

She exclaimed that the price had indeed gone up - unfortunately, my 90-day prescription came to over $450. Last time I renewed (3 short months ago), it was just under $20. Ugh!

I told her I wasn't prepared to pay the $450, and asked if she could run the numbers on a 30-day supply. It came to $159 - still way more than normal, but at least less out of my pocket this month.

In addition, I had my Goodrx coupon ready, and gave her the appropriate codes over the phone. She applied the coupon, and the price dropped from $159 to $116 - a definite savings. I told her we had a deal, though we both agreed it was a sad state of affairs!

So while I didn't emerge completely unscathed, I was able to save a little money, at least for the time being. My doctor was aware of the issue when I mentioned it at my last appointment, but at that point, I didn't have any dollar figures to share. Now that I know the personal impact, I'll be sure to let him know. A $430 increase is too big not to mention!

While I'm hopeful the prices will return to normal soon, here are my recommendations until then:

Recommendation #1:

*Call and speak to a pharmacist to renew. You'll know what to expect before you arrive to pick up your prescription, and you can discuss your options (30 day vs. 90 day, coupons, etc.) with a live person.

Recommendation #2:

*Explore those online coupons (especially GoodRx), and don't be shy about using them. I admit the savings may be minimal or not applicable on some drugs, but you deserve to save as much and as often as you can. Definitely worth the energy to check!

*Recommendation #3:

Mention the price increase to your doctor. Certainly don't expect any financial tips or breaks, and you may just get a simple "Gee, that's too bad." But I always think it's valuable to inform the prescriber of issues like this. It certainly can't hurt!

Monday, June 1, 2015

The Indonesia Lupus Foundation climbing Mount Everest!

Inspiring photos of members of the Indonesia Lupus Foundation climbing Mount Everest. Part of their motivation? To show the world that despite lupus, they could climb. I love it!!

Here's their website for the while story!

Lupus worldwide - the Indonesia lupus foundation making a difference!

People with lupus fight for their rights to medication

Check out this great article about lupus, and the inspiring efforts of the members of the Indonesia Lupus Foundation!