Rituximab infusion frustration

[Jer29-11]

Hey all, just feeling a little sad today. I’ve been on Rituximab for a few years now (with ofatumumab in between before it was pulled in IV form). I always have infusion reactions, even with pre meds! Ugh, it’s so frustrating 😭

I had an infusion Friday and I will say this has by far been the best infusion I’ve had to date. I was actually able to get the entire amount which has never happened before and I only had 2 minor reactions where it had to be stopped and more meds given. I’m so sensitive to medications. I do NOT like taking oral steroids, they make me feel like crawling out of my skin, but usually have to for 5 days after infusion. I was hoping to avoid it this time since it went better, but had to give in.

I felt ok yesterday, but today I woke up with a horrible headache, flushed face and tingling/itching all over my body. My husband was like just take the steroids! I feel better now, but I know I won’t for the next few days, but what’s worse, feeling bad from the infusion or oral steroids? I don’t know 🤷‍♀️

Anyways, thanks for listening. Just hoping these infusions will get better with time as I hate taking medications.

Hope you all are well. Blessings! ❤️

[hopeandgrace]

Sorry to hear! I am on Rituxan as well and have had to pause it, had rashes and my face looks pale and devoid of blood flow after! Praying for your recovery and better days ahead 🙏🏼

[Jer29-11 in reply to hopeandgrace]

Thank you! I’ve had pretty severe reactions in the past, but they seem to get better each time. Takes about a week to recover from an infusion which is super annoying. Always appreciate prayers

[JSSimp]

Praying for you. Jeremiah 29:11King James Version

11 For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end.

[Jer29-11 in reply to JSSimp]

Thank you! The scripture I clung to when in the hospital dealing with MS for the first time (hence the profile name, lol). I needed to be reminded for sure! ❤️

[JSSimp in reply to Jer29-11]

Yes. This is my daily scripture as well🙏🏾

[fufono]

I'm so sorry you have to go through this. Have you ever considered a different DMT that doesn't cause so many side effects?

[Jer29-11 in reply to fufono]

Thanks. I have an appointment with my dr in June, so I’m sure we’ll talk about it. But I’m fine about a week after the infusion and it’s only twice a year 🤷‍♀️

[kdali]

I'm sorry it's a mess for you 😞

[Tuliplover]

That sounds very frustrating to have a terrible allergic reaction with every infusion. As someone who is about to start Ocrevus and is highly allergic to everything, I’m curious, what symptoms do the oral steroids improve for 5 days?

Praying for you! I love your username (or whatever it’s called). I need to cling to this scripture right now too.

[Jer29-11 in reply to Tuliplover]

Well, the reactions I have during the infusion (tingling, itching, redness, sometimes hives) just linger for days after. The oral steroids are to help minimize them. This time I had a terrible headache during and after the infusion, which has not happened before.

I hope I this didn’t discourage you before your infusion! Just so you know, this isn’t normal and I’m only one of 3 out of more than 400 patients this happens to with my dr. God is in control!!!

[Tuliplover in reply to Jer29-11]

Thanks for the info/education. Didn’t know that could happen… so sorry you are the rare individual who experiences those lingering infusion reaction symptoms!

Out of curiosity, how does a person get prescribed Rituxan instead of Ocrevus? I’ve was diagnosed late 2015 so I know folks that were on Rituxan bc Ocrevus wasn’t approved yet, but noticed in your initial post you said you’d been on R “a few years now”. I’m a support group leader with the MS Society so I try to stay educated and this is something I don’t know!

No, you didn’t discourage me. I’m far too concerned about Tysabri Rebound right now. 🙁 You just educated me!

Thanks!!🧡

[Jer29-11 in reply to Tuliplover]

Honestly, I’m not sure! This was the treatment my dr recommended for me. I’m still not sure if it’s approved yet for MS, but he said he would be able to prescribe it as an off label use. I’d say just ask for it if someone wants it! Good luck with your upcoming infusion!

[Tuliplover in reply to Jer29-11]

👍🏻 Thanks and thanks again!!

[twooldcrows]

sorry it didn't go real good for you ....love and much happiness ...get better ...

[Tazmanian]

Hi I'm on ocrevus, but can you try home infusion steroids and definitely talk to your neurologist

[Jer29-11 in reply to Tazmanian]

Thanks, that’s a good idea! I’ll ask about that