My second attempt at repurposing Rituxan was a success. The last two weeks were busy and I was tired, so I decided not to blog.
It was incredible to see my platelets return to normal half way through the infusions. I continued with the IV steroids as part of my pre-medication routine, so I did not have any reactions. However, I had to ask for it every time so I will be requesting that this becomes a standard part of infusion prep when we start a trial. While they generally just give Benadryl and Tylenol to cancer patients using Rituxan because they need to gauge their reaction, this is unnecessary for ITP.
Overall, I am relieved that I am back in remission again. However, this was quite the physical and emotional rollercoaster. I am still tired, and likely will be for the next few weeks. I am trying to take a short nap every day to keep my energy up. I have noticed that the brain fog is completely gone, and I am very “clear headed” now. The purpura is gone, but I do have some darker spots where they once were. I am hoping they will go away in a few more weeks. My taste buds are still a little off, but not nearly as bad as before.
I’m still pretty burnt out emotionally, this was a hard fight and it took a lot out of me having to constantly advocate for every little thing. I certainly don’t want to go through this again in a few years when ITP comes back, so I am pushing to get Rituxan on label.
I’ll see the doctor again next month, and it will be interesting to see what my platelets are at. From there, we will decide how often I see him. I am looking forward to a break! I will be seeing a new Rheumatologist to address my Fibromyalgia and Sjögren’s Syndrome. However, I have noticed less joint pain since I finished my infusions. Perhaps some of that was B-cell related as well.
The photo above shows my last two CBCs. I was at 94,000 platelets when I had my first Rituxan infusion on 7/1, and before my second infusion this past Monday (7/8), I went up to 100,000! I was killing off around 12,000 platelets a day before treatment, so this was extremely impressive.
I am feeling pretty good despite the mild headaches, constipation, fatigue, and lack of appetite. Those things really don’t bother me when I know my B-cells are being suppressed!
My next infusion is Monday, and I’ll have another CBC before treatment. I am curious to see where my platelets will be at the half-way mark. I’ve noticed my purpura fading, I haven’t developed any new bruises and I have no brain fog. So far, a night and day difference.
Some other good news: my nurse Jen was able to tap my wrist for the infusion, which saved me from having to hold my arm straight for a few hours. I also was administered 100mg of IV steroids in addition to Benadryl and Tylenol as pre-meds. I infused pretty quickly, from 10 am to 1:15pm, with no reaction. The only thing I don’t like about my wrist is the burning in my arm after Benadryl. It hurts for about 15 minutes and then subsides. I also have to be careful that I don’t let anything touch the area for 24 hours after, because it is tender. I usually wear my Apple Watch on my left wrist, but have to keep it off while the area heals.
That’s the update for now, I am happy with how things are progressing and ready for infusion three. #PlateletsUp
I’m home from my first Rituxan infusion, only three left to go!
While I’m smiling, I need to be brutally honest. Today was hard, the smile is put on. I’m tired, stressed, and I had another massive emotional rollercoaster caused by our broken healthcare system. I almost didn’t have my infusion today.
First, upon my arrival to the infusion center my authorization was not in the system. Instead of calling upstairs to get the information, they made me go upstairs to find the employee responsible. Why it couldn’t have been handled by a phone call I’ll never know. Just another part of the process where the systems and staff don’t seem to have an open line of communication. Insurance issues are handled in an entirely separate department and no one knows how to navigate it outside of a few people. Thankfully, the problem was fixed with a phone call down to the infusion center from the authorization staff.
When signing all the paperwork to do Rituxan last Tuesday, I had to take a pregnancy test to process the orders. It took my doctor a good ten minutes of navigating the EHR system to determine which of the tests was needed for Rituxan. At no point was a Hepatitis B panel shown, but apparently I needed that too. Unfortunately when I went to infuse today, my treatment was almost cancelled because I didn’t have the panel done. It wasn’t discovered until the Pharmacy was prepping my infusion. My amazing nurse got my doctor on the phone (he’s out on vacation) to override the testing requirement so we could get the prescription processing. She ended up drawing blood and everything came back fine.
At the time this all went down, I finally broke down and cried. This disease has been a constant source of unrelenting stress since March. I honestly never anticipated having this much trouble when ITP came back. Pair that with not sleeping and feeling generally miserable because of crashing platelets, I couldn’t hold in my frustration any longer.
While I tend to handle my disease with sarcasm, humor, and witty banter, I am still human with raw emotions. The system is not designed for rare disease patients, especially ones who are using off label therapies. We are forced to micromanage care, and anytime you look away, you risk someone else dropping the ball. Most of the time, those people are not the ones directly caring for you (like doctors or nurses), so it makes advocating for yourself much more difficult.
I absolutely hate having to be assertive, direct, and at times downright demanding to get what I need to battle ITP. I want to find creative solutions to the problems all of us rare disease patients face. Every time I’ve shared these bumps in the road, patients tell me their horror stories. I know we are not alone, but it seems like the system temporarily corrects itself for one of us, then goes right back to operating under broken processes. At the end of the day, this helps no one, because the cycle continues.
I hope that after all my infusions are finished and I am back in remission, I can work with payers, hospital systems, EHR companies, legislators and rare disease groups to fix a lot of these issues. There’s no sense in dismissing them once my treatments are over, because I will eventually be back in the system when I come out of remission again. I also want to turn negatives into positives. I want my challenges, problems, and pain points to help inspire change.
Now on to some interesting things about today’s infusion:
I had a reaction an hour in, complete with itchy eyes, throat and ears. I became flushed while my nose got stuffy. They had to stop the infusion and administer more Benadryl plus IV steroids. I had pre-meds of Benadryl and Tylenol, but no steroids. That’s likely what caused my allergic reaction (it was similar to what I experience with cats). For the next three infusions, I am going to ask for the steroids as pre-meds too.
My platelets went from 169,000 to 94,000 in 6 days. I am destroying them rapidly, so I am anxious to see how quickly Rituxan will work.
Food already tastes a little bland, but I’m hoping that will help me lose the 10lbs I gained from steroids!
Now that infusion one is finished, I am anxiously awaiting next Monday. Keeping my fingers crossed that the rest of the process is smooth from here on out. I appreciate the compassion shown by my nurse today. She went above and beyond to advocate for me when I felt defeated. She made it happen, and for that I am eternally grateful.