Out of Remission, Back on Prednisone

Cue the long groan, I am out of remission and my platelets hit a startling 53,000 this week. This triggered swift action by my new hematology team, so I am taking 40mg of prednisone daily.

Before I get into that- let me tell you how much I love my new hematologist. Dr. Ahn retired February 2018, so I was nervous about seeing a new doctor. Friends of mine recommended Dr. Harrington at UM (who’s father happened to discover how ITP works). He’s brilliant, funny, and practical in his treatment of ITP, especially when it comes to steroids. I was so glad to hear him say he won’t keep me on prednisone for a long period of time.

One of those familiar “Purpura” bruises on my leg.

I had blocked out most of the negative experiences I had almost 5 years ago with steroids. After all the moon face, acne, weight gain, constant hunger, anger, poor temperature regulation, and insomnia were horrible. Well, that’s all back and I have been expressing my frustration about it. I was finally able to sleep last night, thanks to medical marijuana (more on that in an upcoming post). I wish I had that stuff back in 2014 when this journey started. I woke up this morning a bit more refreshed and less hungry. My goal right now is to not gain any weight while moving through this part of the treatment process.

Another sign, see that purple bruise in the 73? A simple pinch from my bracelets caused that.

I’m documenting bruises again and getting weekly CBCs. Obvious goal: using Rituxan again. But I run into the same problem I had in 2014, safety data is scarce. I’m leaning on my team at UM to trust that since it worked once, it will work again. Since I am traveling a lot this month, I am hoping by mid-May we will be able to get those infusions going.

If you have used Rituxan more than once for ITP and are willing to share your experiences with me (and your CBC data), please email me at RareCandace@gmail.com. I’m planning on doing something similar to what I did in 2014, creating a mini data set to show the efficacy of Rituxan for immune destruction of platelets.

There’s more to this story, I am still hard at work behind the scenes to get ITP patients access to a CD 20 inhibitor ON LABEL. Stay tuned.

Contest Winners!

I want to congratulate the following people on winning a signed copy of How To Heal A Bruise!

@Marilia_lia18

@missplaquetas

@MissesSuit

Thank you to everyone for posting your ITP Awareness Day photos! Remember that awareness and advocacy is important every day of the year.

You can purchase a copy of How To Heal A Bruise here.

Win a Signed Copy of How to Heal a Bruise!

A wonderful platelet pal, the owner of ITPandMe.com has published a book! I am so excited to be giving away three signed copies of the book.

Rules:

Contest begins on Wednesday, September 23, 2015 at 11am EST.

Three (3) people will be selected to win a signed copy of How To Heal A Bruise by sharing a social media campaign message to raise awareness of ITP.

#ITPAware day, Sept 25! Check out How To Heal A Bruise: http://itpandme.com/itp-awareness-day-coming-soon/ #raredisease @RareCandace @meghan_brewster

**Make sure you put Meg & I in the tweets so I can see them!**

Also, I will accept bonus submissions if you tweet using #ITPAware and link to How To Heal A Bruise on Amazon!

BUT WAIT!

Take a photo holding a sign discussing life with ITP, the 21st Century Cures Initiative or how much you hate Prednisone and you will receive TWO (2) bonus entries!

Note: you’re giving me consent to use your photo on social media to continue to raise awareness about ITP. Get creative and have fun! Make sure you tag me on Instagram and Twitter: @RareCandace 

Winners will be announced Thursday, October 1st at 5pm EST (if I am late, forgive me as law school and my new autoimmune issues have been kicking my butt lately).

Dear Senate: You Should Care About the OPEN Act

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Allow me to introduce myself. My name is Candace Lerman and I’m a 28 year old rare disease patient. I lived 27 1/2 years as a happy and healthy person with a successful career, hobbies, lots of friends, the American dream. Then on May 1st, 2014 everything was taken from me. I was diagnosed with a rare blood disorder called Immune Thrombocytopenia (ITP). I had my whole life turned upside down because of it.

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My disease can be painful and debilitating. I lived in a bubble while the best doctors in the world at the University of Miami tried to bring my disease under control. After seeing that steroids wouldn’t work and were destroying my body, my doctor recommended something that seemed impossible. He told me about Rituxan, a drug that treats Non-Hodgkins Lymphoma patients, and he thought it could help me control ITP. I was shocked, I was beyond scared and I was worried about what “chemo” would do to my already frail body.

I had to pray a lot, research a lot, think A LOT. I took a leap of faith and decided to go through with the treatment. I started this blog and documented everything, I wanted people to see what my experience was like using an FDA approved drug, off label. When I was declared in remission, I was elated. Finally I could begin to rebuild my new normal as a rare disease patient. I no longer had to live within the confines of ITP. I no longer had to fear dying too soon. The treatments were easy to deal with, and after four weeks I was an entirely new person. I finally established my new identity as a Rare Disease Warrior.

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I traveled to DC for Rare Disease Week at the end of February and had the chance to meet with one of the sponsors of the OPEN Act, Congressman Bilirakis. I was moved to tears after telling him my story and our discussion of how repurposing FDA approved drugs for rare disease patients could save lives. I finally felt that all of the pain, the suffering, fear, heartache and sacrifices I made were going to contribute to a great cause. I don’t want anyone else with ITP or any other rare disease to experience the hopelessness I felt.

Shortly after my 28th birthday, before I ever knew I had another option, I contemplated killing myself. I’m not saying this to be dramatic, but I felt that there was no way out of the hell I was stuck in. I felt like I wouldn’t be able to live a normal life with the treatment options I had available. I wanted to go to law school, hang out with friends, spend time with my boyfriend, travel and experience all the wonderful things being 28 has to offer. I didn’t think I would have a chance to do any of it. I thought I would spend the rest of my life in and out of the hospital and my doctor’s office.

Rituxan has allowed me to be myself and I don’t see why other patients like me shouldn’t have the same opportunity I had. I am starting to worry about continued access to Rituxan once my remission ends. I have to change insurance plans at the end of the year, so since Rituxan is considered “off label”, I might not be able to use it again when my ITP comes back. This is why the OPEN Act is so important to me. I want to be able to continue living a normal life.

So Senators, I ask that you support the OPEN Act and work together with representatives in the House to get the 21st Century Cures Initiative on President Obama’s desk by the end of the year. I know it can be done, and patients like me cannot wait any longer. We need more treatments and cures, before it’s too late!

Op-ed on the OPEN ACT featuring ITP

I’m honored to have my story mentioned in Congressman Bilirakis’ op-ed piece which is on The Hill today. The 21st Century Cures bill passed the subcommittee by a verbal vote which is incredible!

The link to the article is here. Be sure to continue reaching out to your representatives and encouraging them to support the 21st Century Cures legislation!

The Fear of Remission Ending

When I was finally done with my Rituxan treatments and my doctor declared it a success, I was so relieved. Finally I felt like I had some control over ITP. Then I inquired about how long my remission would last. I was warned that after about 9 months, my body will start to produce new working cells that Rituxan had disabled. I referenced my calendar and saw that it would be close to my 29th birthday. Now every day I wake up, I think about this upcoming date.

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How Washington Can Change Rare Disease: Part Four

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President Obama announced the Precision Medicine Initiative to a room full of doctors and representatives from the healthcare industry. While this is an exciting time for patients dealing with various forms of cancer and other conditions, noticeably absent from the plan was the rare disease community. In fact, I have yet to really encounter anything from the PMI that focuses on researching rare diseases despite all the rhetoric with understanding genetics and how medicine can taylor treatments to suit an individual.

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From Fearing To Facing My Rare Disease

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If you told me in May 2014 that I would complete a 5k nine months later, I would be shocked. In fact, I would probably think you were crazy. I thought that because I was diagnosed with immune thrombocytopenia, my life was over. There was no hope, only an endless battle with needles and platelet counts. Today I proved myself wrong, and it felt so good! Continue reading