Switching To Rituximab

[Chadwyck]

Hi Everyone. Hope you're all doing well. I have news but I don't know if it's good news yet but it seems to be.

So last week I did my regular follow-up with my Rheumatologist just after seeing my Nephrologist last month. They both said a new word to describe the overall disease status. They said, "It's grumbling..." I had to associate that with everyday speech that I'm familiar with, thinking, the volcano is grumbling but hasn't erupted yet! Does that sound right?? After carefully looking back to October 2022 to now, May 2023, they increased the Septra to everyday for 2 weeks and go back to regular Monday, Wednesday & Friday. It worked for about a month and the grumbling started again. Then in January 2023 we increased the Azathioprine from 100 mg daily to 150 mg daily. That worked for almost 2 months, then the grumbling started again. So then I had my Nephrologist's appointment in March. My total kidney function was normal but the Albumin to creatinine ratio was the highest it has ever been. I'm scheduled for a kidney ultrasound in June. Then from there until last week, I developed a harsh cough that won't go away, nose bleeds again and blood shot eyes.

They decided that because the restrictions from Covid have been fully lifted, they're now switching me over to Rituximab as a replacement maintenance therapy. I've been begging for that since 2018 and now that it's going to happen it doesn't even seem real. The good thing is that today I had to refill my Azathioprine and I started to laugh, knowing that it'll be the last time I get that prescription refilled. Next month when Rituximab starts, that's instead of Azathioprine & Leflunomide. What I like is that I will only need Septra 3 days a week!!! less refills and more importantly, when Christmas time comes I don't have to rush to restock everything before they close for the new year. So I'm excited but nervous introducing a new drug into my body. What I do like, however, is that this is target therapy and not Cyclophosphamide chemotherapy like initially. I survived the horrifying side effects over the years and couldn't stand the thought of re-doing that all over again. My question to anybody on Rituximab is... what should I expect? I know that some people have amazing results and some have bad results. Should I consider packing an over night bag just in case I might get admitted for serious effects? Do I have to drink as much water as I did for Cyclophosphamide? All I keep hearing is that Rituximab is known as the wonder drug for ANCA associated Vasculitis, and that's the excitement I'm running off of.

[Pete]

@Chadwyk

I’ve been on rituximab since 2014 (gettin a dose tomorrow). The infusions have been long 3-6 hours) but uneventful.

The administration protocol involves a prelude of a steroid (solumedrol), antihistamine (benadryl), and Tylenol. These are given to mitigate any allergic reaction to rtx. The infusion flows slowly at first (~30 ml/hour), and gradually increases to about 100 ml/hour). If you notice a metallic taste in your mouth or itching, tell the nurse immediately. They will assess you. They mayy either discontinue or reduce the flow.

Tomorrow’s infusion is scheduled for 4 hours. I take my headphones, some books, a sandwich and some snacks, and some water. Other than being long, the infusion is uneventful. I generally sleep fitfully the night of the infusion thanks to the steroids. I drive a little over two hours each way from home in Columbus to Cleveland Clinic. It makes for a long day.

Hope this allays any fears or concerns you might have. Good luck!!

[Chadwyck]

Aaaah, thank you Pete! I don't know why I'm so edgy about this after begging for it for so long. I think it's because the way the infusion is done reminds me of cyclophosphamide from the beginning. Part of my brain is asking me... is all this still happening?? I thought I got rid of you years ago. Then again, the daily medication reminds me of my reality. I did blood work today hoping the results look better than the last time. Hope your Rituximab infusion goes well. When mine starts, I might do a live recording of it documenting my journey with GPA/Wegener's.

[Masha]

Pete described everything perfectly. I drink gallons of water starting a few days ahead and also a lot of water when I am receiving it. Fortunately the bathroom is right outside the room where IV is administered. My usual nurse is wonderful and she gets the vein on the first try.
In my case the steroids that I receive make me very hungry. When I leave we usually pick up Italian food on the way home. I remember in the past, Pete mentioning an Italian restaurant outside of CC.
The steroids also give me a sleepless night. I am retired so that is not a problem.
Good luck, you should be fine. Rituxin is my miracle drug. Works for me.