Wednesday, November 27, 2013

Awareness T-Shirts

I've had an idea floating around for quite some time. I wanted awareness t-shirts. I wanted them to be a bold, in-your-face, cannot be ignored type of shirt. I wanted to wear them while I run (well, when I get back to running. Darn you April. I'm still too weak to train regularly).

My first draft might have been a little too in-your-face.

"Ask me about my steroids."

Yeah, let's have me running a race bragging that I take steroids. While I do want to generate discussion, I might not want to generate that type of discussion.

Round two turned out better.

It's amazing the discussion that these shirts have already started. Someone saw me working on them and thought that they were a joke. "Life-saving steroids? Yeah right."I then proceeded to explain Adrenal Insufficiency. He thought steroids were only used to treat severe lung issues, reduce inflammation, or combat horrible infections as a last result. I was able to explain to him that I take a MUCH lower dose of those steroids and without them, I would die. They are my life-saving drug, just like insulin is a life-saving drug to a Type-1 diabetic. Awareness raised.

I didn't used to be this passionate about re-educating people on Steroid Dependence. Then I almost died due to lack of education. Now, I speak up, speak loud, and speak passionately. Things such as my new medical alert bracelet do not give people the option to misinterpret the severity of my situation.

May we continue to raise awareness so that events like Sarah Thomas's death never happen again. Sarah Thomas died because the paramedics did not understand Adrenal Insufficiency. We can prevent more unnecessary deaths through awareness and education.

I would like to remain Clearly Alive.

Here's a selfie, with a broke cell phone camera showing the front and back of the shirts.
They're AWESOME!

03/31/14 UPDATE: Want to know something awesome? We sold over eighty shirts between round one and round two of these orders. That's a lot of people walking around challenging people to "Ask me about life-saving steroids." Wear your shirts and wear them proudly!

06/25/14 UPDATE: Round two working with the t-shirt printer failed. His shop dropped the ball. I apologize for all those who were excited about receiving their shirts, your money shall be refunded.

08/28/14 UPDATE: I FIGURED OUT A WAY TO CONSTANTLY SELL THESE! Happy dance! Check out the shirts and other awareness items here. Proceeds will be donated to either NADF or AIU.
New shirts! New shirts! :)

Sunday, November 10, 2013

Blogging for A Year!

"My name is Amber, and I live with an incurable disease."

I wrote that exactly one year ago.

One year ago, I decided I was done being silent about my disease. I wanted to share my story. I wanted to speak up so that others might learn. I want to tell people that it is ok that they can not fix my disease and that some days I just have no spoons left.

When I started this blog, I did not foresee my crisis in April. I did not realize that we would stumble upon how Qualitest generic hydrocortisone was making me and multiple others so sick. I have seen fourteen different specialists since April 19th. This past year has been difficult for me with my Addison's.

I'm still Clearly Alive.

I still actively choose to remain optimistic and work with this beast, be it by running a half marathon or walking a 5k. I live my life day by day, thankful for my journey.

Oh, and I've learned that not everyone might understand what "STEROID DEPENDENT" means. I got a new medical alert bracelet to hopefully clear up the confusion. If you don't understand that last line... well... then... you need help.

I blacked out my last name and year of birth for this picture.
The "13.1" is to remind me that I have been able to accomplish some pretty amazing things,
Addison's and all.
Here's to my next year of blogging being even more full of adventure! But let's make it the good kind of adventure. I'd like to avoid medical adventures for a bit.

Wednesday, November 6, 2013

Generic Hydrocortisone

Does your HC look like this?
If yes, switch to a different brand. ASAP.

In The Nightmare Revisited, I made the bold claim that I am allergic to the generic hydrocortisone. It was one of the five things that triggered my April Crisis. This has generated much discussion through various forums. Thus, I would like to write out my experience in a single post that can be quickly referenced. As it turns out, this issue is much more prevalent than I first realized. Many of us have been suffering.

For those who are new to my journey, I was diagnosed with Adrenal Insufficiency in 2005 and immediately started on the brand name Cortef. I responded quite well to the treatment and only ended up in the ER once for vomiting and once for a horrible case of the hives. In 2008, my family moved to a new state and I got a new endocrinologist (Endo 2). My health insurance also forced me off of Cortef and onto the generic hydrocortisone (HC) due to the cheaper cost.

Suddenly, it felt as if my medicine stopped working. My anxiety returned. My depression cropped back up. I started to withdraw from society. I was slipping back into the pre-diagnosis Amber. Endo 2 immediately started me on fludrocortisone (FC) and changed my official diagnosis to Addison's Disease. But even with the addition of FC, my treatment seemed less effective. This led us to experiment with other types of Glucocorticoid steroids such as prednisone and dexamethasone (dex). Eventually, we decided on treatment that involved a small night dose of dex with a small afternoon "booster" dose of HC. This was my treatment plan for over three years.

Doctors are trained that the generic is medically equivalent to the brand name. No one thought to question the timing of my problems and how it correlated perfectly to when I was switched off of Cortef.

I moved states (again) and got a new endo (again). Endo 3 and I started changing around my ratio of dex and HC to more closely match the Circadian Rhythm of cortisol. This was based off of my research, not hers. I ended up firing Endo 3 after she proved she could not manage my Addison's. Sometime around this point (Fall 2011), I started to unintentionally lose weight. Constant headaches began. Persistent nausea arrived.

Fun fact? I had actually doubled my meds the day before because I wanted to avoid a crisis. It did not help. I found myself in the ER two weeks later despite stress dosing. My experiences were not agreeing with the expected outcome. I would feel worse over time with stress dosing, not better. One of our assumptions had to be wrong.

Generic hydrocortisone is not medically equivalent to Cortef.

Inactive Ingredients
Brand Name: Cortef Generic: Qualitest Generic: West Ward*  Generic: Greenstone**
Calcium Stearate
Silicon Dioxide
Microcrystalline Cellulose
Calcium Stearate
Corn Starch
Sodium Starch Glycolate
Corn Starch
Magnesium Stearate
Lactose Anhydrous
Mineral Oil
Microcrystalline Cellulose
Silicon Dioxide Colloidal
Mineral Oil
Sorbic Acid
Sodium Lauryl Sulfate
Magnesium Stearate
Sorbic Acid
Sodium Starch Glycolate

Generic: Glades Generic: CorePharma  Generic: Lineage  Generic: Vensun
Lactose NF
Lactose Monohydrate
Pregelatinized Corn Starch
Microcrystalline Cellulos
Corn Starch
Cellulose, Microcrystalline
Microcrystalline Cellulose NF
Croscarmellose Sodium
Microcrystalline Cellulose
Silicon Dioxide
Croscarmellose Sodium NF
Sodium Starch Glycolate Type A Potato
Croscarmellose Sodium
Magnesium Stearate
Sodium Starch Glycolate NF
Magnesium Stearate
Sodium Starch Glycolate Type A Potato
Magnesium Stearate NF
Corn Starch Magnesium Stearate

*Note on the WestWard Generic: As of November 2013, WestWard is no longer producing their generic HC.

**Note on the Greenstone Generic: If you notice, the ingredients in the generic HC for Greenstone are identical to the ingredients in the brand name HC Cortef. The pills are even stamped as "Cortef." If for your insurance or your pharmacy refuses to give you the brand name Cortef, ask for Greenstone. It is the same brand name medicine sold at the generic price.

My mom was the one who actually discovered this. She was the one that remembered my health decline of 2008 and how it lined up with the timing of stopping Cortef. At first, no one believed her. We were all trained that the generic is medically equivalent to the brand name.

The next time my prescription was filled, she asked the pharmacist to order Cortef. I would pay the extra. Mom was determined to run a simple experiment. And guess what? Her experiment worked. She discovered something that 14 different specialists, 5 really scary tests, and 30 doctors appointments had missed.

I now refuse to take Qualitest Generic Hydrocortisone.

My Issues on Generic Qualitest

  • I felt sicker after I would increase my dose. Standard protocol dictates increasing our dose up to three times the normal amount in times of sickness. Yet I kept ending up in the ER when I was taking pro-active steps to avoid it. That was not logical.
  • My weight was dropping back to my pre-diagnosis size, even with an increased steroid dose. More steroids normally means more weight. I was taking more during times of physical stress and illness, yet I could not maintain that healthy weight. The extra pills seemed to do nothing.
  • 20-30 minutes after every pill I swallowed, I would have a reaction. Again, this was not logical. HC normally begins to peak in the blood stream around this time. I was supposed to gain energy, not lose it. These episodes would last 1-3 hours and correlated perfectly to the timing of my medicine. I wouldn't be able to see, or speak! I could barely move. Every day. Three times a day.
  • Constant headache. Constant miserable headache.
  • Constant nausea. Zofran was a friend. But I only took it when I was scared that I would actually vomit. Most of the time, I just suffered through the miserable feeling.
  • Ready for the scariest fact?
    • From 2005-2008, I was in the ER/urgent care twice in four years (0.50 times/year).
    • From 2009-2013, I was in the ER/urgent care nine times in five years (2.25 times/year).
That generic HC might look cheaper on paper, but it's a hell of a lot more expensive when you factor in all of those medical bills. I was slowly being poisoned with every generic Qualitest pill I swallowed. I would die without these steroids, but I was slowly dying with them. I am so thankful that the solution was as simple as switching back to Cortef.

Do you have Adrenal Insufficiency and...

  • Are constantly nauseated?
  • Have a never ending headache?
  • Still feel beyond miserable despite your doctors telling you that your dosage is correct?
  • Are regularly blacking out not due to another medical diagnosis? 
  • Have an insurmountable amount of fatigue? (Side note, this could also be due to Gluten.)
  • Remain sick despite stress dosing?
Check the manufacturer of your HC. Is it the generic pill made by Qualitest? Call your pharmacy to see if you can get off of it. Fill this out. Do you have an opinion on the subject? Please share it below in the comments!

And note that I am NOT the only one who has struggled with this. Here is someone's experience from seven years ago.

12/23/2013 Update: I received a very pitiful letter from Qualitest apologizing for the "inconvenience" or "concern" that this issue may have caused and have heard of multiple others receiving the identical letter.

Keep filling out FDA reports. Also, if you have also been poisoned by Qualitest, please comment below and share your story.

05/16/2016 Update: It was brought to my attention that Qualitest was recently bought out by Endo Pharmaceutical Inc. This means that a new company can look into our complaints, and work to remove the harmful and completely unnecessary ingredient Sodium Lauryl Sulfate. 

BUT this requires action on your part.

Please call 800-504-0122 and pick Option 1. Please ask to add your story to Jo Edson's case number EMI16-008926. I was on hold for about 20 minutes and then spent the next 20 minutes sharing my story with a very kind nurse.

Endo Pharmaceuticals mentioned how they were unaware of any harm caused by Qualitest HC. We should make them aware.

01/01/2017 Update: It was brought to my attention that Qualitest pills are now being marketed as PAR Pharmaceuticals. That means that if you have it in your file, "No Qualitest" you might still end up with Qualitest labeled as PAR. The amount of smoke and mirrors in the Big Pharma is ridiculous. The pills still appeared to be marked with a "V." If your pill has a "V" on it, try to switch to something better.