Thursday’s doctor visit was a rollercoaster. I ended up at 31,000 platelets and needing treatment, so he suggested we try IVIge. Cue major nerves, I have spent the last five years reading about the brutal side effects other ITP patients experienced, so I am worried about how I will feel after the infusion.
I’m curious to see how long my platelets will remain at a normal level after treatment. At the height of my platelet destruction in 2014, Dr. Ahn believed it wouldn’t hold for more than 10-14 days. However, this time around I caught it early, so the outcome may be entirely different. I am happy it is only one infusion, instead of four, and will hopefully have me back on my feet after the weekend.
So how am I preparing for it? First- I asked fellow patients. The hospital told me to hydrate, but I wanted to hear from people who have been in my position. Thankfully, everyone told me to load up on electrolytes, so I bought a ton of Powerade (Seminoles don’t drink that gator-garbage), Smart Water and Coconut water. I’m also planning to eat soft foods the day before, during, and a few days after the infusion in case I have vomiting. Because my teeth were weakened by past prednisone usage, I want to minimize any potential damage that can be caused by throwing up. Infusion clinics really should be giving out this advice when you schedule your appointment, but that is a fight for another day. I want no surprises, so I’m glad I asked because just chugging water the day before was not going to cut it.
The most difficult part about this infusion is the unknown. I did not experience this level of apprehension when I used Rituxan, but I was confident it was going to work. This is a sort of a shot in the dark, I expect for the treatment to fail after a few weeks and my platelet count to drop. However, we need the data and we need to see how I tolerate it. So I’ll play along, for science.
It’s no secret this go-around with ITP has been stressful. I thought by now I would be close to finishing another round of Rituxan, but since Dr. Ahn retired, no such luck.
Tomorrow I see my new hematologist again, he’s taking blood and after the results come back (within 10-15 minutes), a plan will be crafted. Why the nerves? I’m afraid of once again being told I need to “wait” for treatment.
Because my platelets can drop to zero pretty quickly, there is no sense in waiting around for it to happen. Unfortunately, ITP treatment varies by doctor and some are willing to wait until I get very low. I know my body well enough to know that will come quick, so acting now is best. After all, we wouldn’t wait until cancer reached a more advanced stage before issuing chemo. ITP should be treated no differently.
This is a short blog tonight, I need to try and get some rest, but I wanted to document my nervousness because I know there are other patients out there like me. I guess this is “normal”, but it shouldn’t be. I should be able to access the treatment that saved my life once before. I’m chasing that “new normal” I started blogging about almost five years ago. I want to go back to being myself, not living week to week between lab appointments.
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.
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.
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.
Discrimination and bullying of disabled students is rampant in colleges and universities. Now that I have a full year of law school under my belt since being diagnosed with a rare disease and three other chronic conditions, I connect with those who have had similar experiences. I refuse to be silent about “administrators” who torment students with invisible disabilities because they are ignorant. It is obvious that they disregard the Americans With Disabilities Act and university policies with their outrageous and targeted discriminatory behavior. It is an epidemic for the largest minority in the United States. Continue reading →
It is no secret that since I became sick and was stuck on prednisone for months that I began to hate my body. After all, I’m up about 30 pounds from where I was nearly two years ago and I lost a lot of muscle that I had worked so hard to gain. I never acknowledged to myself how much I hate my body until I was out for a walk tonight. My hatred isn’t just for the weight gain or loss of muscle. It comes from a feeling of betrayal: my body tried to kill me. My immune system malfunctioned and for some miraculous reason, I survived months of physically challenging work in heels without internally bleeding to death.
Kona wanted to make a special holiday appearance in honor of our call to action for the Senate over the 21st Century Cures initiative. I sincerely hope that when I arrive in DC in a few weeks, progress will have been made. There is no time to waste when 30 million Americans depend on Congress to take action.
My blog is a road map of my rare disease journey, starting last year when I decided to take a chance and use Rituxan off label. It is not approved for ITP patients. Why? Because we don’t have enough information and research on ITP to conduct a comprehensive clinical trial. One of my goals for 2016 is to change that. Through my research, I have been able to isolate a population of ITP patients who can and will benefit from use of the drug. Simply put, this drug is a life saver and the people who achieve remission from it enjoy a few years of a fairly normal life. There is absolutely no reason why this should be denied to people like myself.
Tomorrow is December 18th, which happens to be the one year anniversary of my remission. I truly believe this gift was bestowed upon me to give me a chance to fight for others. I have lost a few friends in the past year to ITP, it doesn’t get any easier and it makes me realize just how fortunate I am.
I’ve spent the last 365 building my new normal, now it is time to change medicine.