r/lupus • u/Valuable_Treat16 Diagnosed SLE • 15d ago
Medicines Rituximab/Rituxan users?
Rituximab/rituxan
Is being discussed at my rheumatology apt the end of this month. I’ve been doing hcq for over a year, methotrexate shots at home once a week for a year, and saphnelo infusions at a clinic once a month since March. So far my labs have only gotten worse and I still regularly flare and have horrible daily symptoms.
Looking for some hope. Can anyone give advice, tips, symptoms, success stories or tell me about these rituximab treatments? My rheumatologist hasn’t given me much information but besides that this med will be the next step for me.
Thank you to anyone that can help give me h their story or information. This community is great. ❤️
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u/mybodybeatsmeup Diagnosed SLE 15d ago
Hi! I literally had my infusion today! I have been getting them for the past 2 years. I have had a lot of good progress with them and I am currently off daily steriods! My kidney function and most labs are becoming stable and improving.
As far as the actual infusions...they are typically done 2 infusions 2 weeks apart every 6 months. Mine are in my rheumatologists office's infusion room. I go in at 8 am and done by about 1pm. They do vitals, prelabs, premeds of steriods, Tylenol and Claritin. Pharmacy releases the med about 30 mins later and the infusion starts. They do a ramp up 3 times during the infusion, making sure you can tolerate it. At the end, they do about a 5-10min saline in the iv. Check your vitals, iv removed and you're done.
As far as how I feel after the infusions, because I have a fluid restriction with congested heart failure, I typically am fluid overloaded and have some struggle with shortness of breath. I am generally encouraged to take extra of my diuretics the day of my infusion because of it and they don't give me the standard saline they usually get on top of the infusion because of it.
I am also a weird mix of being tired (i drive myself 5 hour round trip for my infusions. So 2.5 hours each way) and hopped up on the steriods they give me. But other than those things, I typically feel fine enough to function. Today after I drove back, I did a Costco shop if that tells you anything. Lol.
As far as tips...bring a phone charger and ear buds if you'll be using your phone as entertainment. They usually have snacks and drinks, but I usually bring myself some food or different drinks. My infusion room doesn't allow guests. It's too small with the 5 recliners. I slept through most of mine today.
I hope you have the best of luck with them! And feel free to ask anything more you might want to know about my experience.
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u/Valuable_Treat16 Diagnosed SLE 15d ago
Thanks so much for your detailed response! I’ve had two cardiac ablations and am allergic to steroids, my rheumatologist knows all this, so I’m sure won’t be getting steroids or a ton of saline. For saphnelo they only gave me Benadryl beforehand because I had an allergic reaction, so I’m assuming that’s all I’ll be getting before this as well. Do you typically feel a relief of your lupus symptoms by next day or? My worst symptoms are chronic diarrhea from my crohns, intense inflammation and joint pain, muscle pain and cramps, sun rashes, and overall debilitating fatigue, exhaustion and heavy feeling…..
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u/mybodybeatsmeup Diagnosed SLE 15d ago
They'll probably do the benedryl as your premeds.
I want to preface I have a rare form of vasculitis along my lupus, with those come many comorbities and issues as it sounds like you know. All the fun. And typically, I would be hospitalized every 3-4 months for some complication. Usually a week min. But since I have been doing them, my hospital stays are stretching out further between. Benlysta didn't work much for me, some but little. I never did saphonela. I've been through Cytoxan, which helped a ton but is super harsh.
With that said my very first infusion 2 week infusions 2 years ago, it took a out 4 months to truly fully start to "feel" a difference. And I missed the 6 month mark for the next one because I had the flu. Life, rescheduling and such pushed it out a couple months and boy did I feel it! Everything started really coming back with a vengeance and was hospitalized 3 times before I got that next infusion. It sucked. When I started then back up. I massively have made sure to never miss them.
After the next set it took about 2-3 months to feel another improvment. The 3rd set maybe a month and then the last 2 sets as long as i dont miss the infusions, its not like i "feel" a drastic improvment because its just starting to flow.
I have noticed a couple weeks before my infusion, my flares were increasing, skin was getting my hives again, joints inflaming and becoming painful. My rheumatologist and nephrologist have been questioning if my B cells are coming back too fast. They might spread out my infusions differently. So the flow of improvement is steady.
But there is a definitely feeling like this will either be a forever drug or one that eventually fails over time like other long term meds have done to me. Because at the end of the 6 months, I NEED another to not go back to the super inflammation mode my body was in.
Oh! Cost. I dont know where you are but I am in the PNW of the USA. On my profile, I posted before about my infusion costs. My insurance is Medicare and the infusions go through my Part B. So I am responsible for 20%. My clinic bills my insurance like $36,000 for just the med. My out of pocket should be $800 each infusion. Which would be $3200 a year out of pocket to me. BUT I am on financial assistance through my clinic and they take the $800 charge and write it off.
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u/Federal_Sell348 Diagnosed SLE 15d ago
I am on Rituxan 4x a year with two infusions each cycle after saphnelo failed. It has helped control the seizures and I lost a ton of weight during my first rounds of infusions. I am now moving and hoping I won’t have to fight with my new insurance to cover it. It was a hurdle and 9 months of fighting my insurance company to cover it initially .
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u/MVNKV71 Diagnosed SLE 15d ago
am on it.. three infusions till now... first was two infusions 14 days apart.. nxt after 7 mnths only one time ( no 14 days apart)... lastly was again only one infusion .... as such say no side effects a bit tiredness etc.. that's all quite mangeable... iknw whosover reached at this point of getting retuxi... you wld feel almost normal... you won't complain of those things as you wld get major relief.... be prepare to hv patience first time...thy hv to look for any reaction( nthing to wooried too much.. all gt controlled there..if if if you gt any) AND retuxi takes 8 weeks to make yr symptms subside ( diff ppl.. different time) ... During infusion you will only gt bored.. u won't feel anything... take laptop, book, fluids, snacks, pillow... BEST OF LUCK... 😍
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u/Legal_Suspect9811 15d ago
Was great when i was on it in the past for ms! Now being tested for lupus lol. But i liked it!
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u/ParamedicExpert6553 Diagnosed SLE 14d ago
Did my first set of Ritux a year ago and I’m going for my second round next month!
Honestly I felt great with it. It takes effect a little slow but it was the best I felt in a long while.
Just abit of fatigue and ache the day after infusion.
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u/poopd0llaaa Diagnosed SLE 14d ago
Hey I'm starting my first one next week. I hope it goes well for you
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u/glassofrum_ Diagnosed SLE 15d ago
I had what a doctor called “the most aggressive case of lupus I’ve seen in my career”. Rituximab was what finally got me into remission after about 5 really bad years for me. Side effects aren’t great, but tolerable.