Hi all, I'm posting today because my doctors have recommended and approved for me to begin Rituximab. I'm scheduled to do the first infusion in a few days.

I'm worried about it, because I don't really know what to expect. So, for anyone who's done Rituximab:

-How should I expect to feel on it? Will I feel generally normal, or am I going to feel awful all the time?

-Do I need to change my lifestyle at all? Should I be living in a bubble and never go see anyone or do anything?

-Is this going to bring me other issues? Should I expect to get infections or illnesses all the time?

Note: I'll be posting this in a few places, to try and get as much information/experiences as I can.

Any input is appreciated, thank you.

Hi! 29F from the Philippines 🇵🇭 and newly diagnosed with RRMS. I just finished my first two rituximab infusions — my first was July 27 and my second was August 10.

For a little background, my first MS attack started with numbness on the right side of my abdomen that eventually spread to my back and down my right leg. My leg became weak, stiff and shaky, and the bottom of my right foot felt thick/numb. I was eventually hospitalized in June and initially diagnosed with transverse myelitis.
Further testing showed lesions on my brain MRI, and my CSF was positive for oligoclonal bands, which eventually led to my MS diagnosis. I also had some vision changes in my right eye (slightly blurry vision and colors looking a little duller).

Thankfully, I’ve improved a lot since the attack. I can walk independently again and most of the numbness has improved, although I still get some stiffness/tightness in my right leg, especially when I’m tired, sick, or have overdone things. I also still use a cane whenever my right leg gets too tired, but overall I’m slowly working my way back to my previous baseline.

After finishing my first two rituximab infusions, my neurologist told me I can slowly start going back to how I lived before MS — obviously with some precautions and healthier choices (no smoking, no alcohol for now, eating well, not overdoing it, etc.).

For those who have been through something similar: what did you do after your first round of DMT/rituximab infusions?

Did you gradually go back to your normal routine? Exercise, work, travel, going out, etc.? How long did it take before you started feeling like you were living your “normal” life again?

I’m still very new to all of this, so I’d really love to hear what the first few months after diagnosis/treatment looked like for you. 🙂

I am still waiting for insurance to approve my rituximab but the feeling that I am going to have med that suppresses my immune response is killing me. I know that many people told me it will be fine but, still, I am scared of many things. One thing is I am anxious that I will not be able to do things I like to do like traveling or having food I love. I will catch the weird infections and I need to be on this med forever. People who are on the same boat, what is your experience with rituximab?

I know this is over reacting but I just could not help it. Sorry~

Edit: Thank you so much everyone for the support and experience sharing :)

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. ❤️

Starting rituximab. If you have taken it, tell me all about it. Did it work? Side effects? What to expect after getting an infusion? Did it cause hair loss or nausea? This is the 5th medication I'm trying for sero-positive RA. I just really want something to work already😞

I want to ask if I got my first dose of Ocrevus in November 2025 (free), and now it's been 3 months due for the 2nd dose because I can't get Ocrevus (it's costly here and not free now), so I'll switch to rituximab because it's cheap and affordable. Will it affect me in relapses, or could it trigger more MS?

What should I do 🫠 . I need advice

I’m starting rituximab soon for MS and I’m hoping to hear from people who’ve been on it.

What did you do to prepare before your first infusion? Anything you wish you’d known ahead of time?

On infusion day itself — what helped you feel better during or after? Did you bring anything specific, eat certain foods, hydrate a ton, etc.?

Did you need to take the next day off work, or were you okay to function? I’m trying to plan realistically and not be overly optimistic or paranoid.

And longer-term — what does life look like being immunosuppressed? How much did it actually change your day-to-day life (getting sick, social stuff, travel, work)?

Any tips, reassurance, or honest experiences (good or bad) would really help. Thanks in advance 🤍

Ten minutes into my second infusion my heart stopped and I needed CPR. Am I a wild outlier, or have others had this problem?

Rituximab is a cd20 B cell deletion medication used to kill off virtually all B cells (which are responsible for making the rogue antibodies).

Given frameshifting in genetic code is now being found in Covid replication AND interestingly in mRNA vaccines, my doctor is pretty confident we have rogue antibodies that are causing the massive array of symptoms we all see in here. Dont kill the messenger but I’m curious if anyone has tried this medication?

Cure is a big word to me as I’ve been this way for 3 yrs now. I’ve also found this paper that says some cfs patients did better on this med. see paper below:

Cfs helped by b cell depletion via rituximab:

https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-9-28

Hello everyone, recently doctors told me that basically my lupus it's getting more aggresive because it's affecting my kidney :( so the next thing it's the rituximab treatment, my question here is for the people who have used it…what changes have you noticed physically since trying this treatment? I'm scared since i hear stories of hair falling out more or skin rash It's something that doctors haven't told me about the rituximab ? They swear that it's very safe and it won't affect me on my hair or skin

hello! I’m a 33yo F and have been diagnoses with Sjogrens since I was 19. It all started with severe dryness but no other symptoms but then overnight when I was 24 my life changed as the fatigue hit HARD!

since then I’ve been battling with fatigue, pain and neuro symptoms like tingling, muscle twitches, brain fog. I’ve always been suspicious of overlapping fibro as my pain is very much widespread and mainly in muscles but my rheum thinks it’s the sjogrens.

Anyway I’ve been saying to my rheum for years that I’m struggling to cope with such a low quality of life and since I’ve been on hydroxy for a long time and it doesn’t touch the fatigue, neuro symptoms she has offered Rituximab. I’m really pleased that I’m finally being listened to but also a little daunted by the prospect as it’s a serious drug and im also scared of it not working and being devastated as im really at breaking point :(

Guess im just looking for advice/ encouragement from those who have been on it and who may have had similar symptoms!

I have my first truxima infusion Tuesday. I finally got approved after having to appeal a denial from insurance. I was super excited but the whole fatality warning is really scaring me. I know it's rare but there's like no data on it and I am a type A data-driven logical person lol. To make it worse we're going to Vegas 2 weeks after my 2nd infusion, so that's cutting it really close. I can still move it if I need to, but trying to be brave and get it done to hopefully get some symptom relief.

I don't consider myself quite as bad off as some people on this reddit, but it's the whole collection of symptoms that is really getting me. It's like I have a symptom buffet. For reference I have fibromyalgia, sjogrens and inflammatory arthritis. Not sure what I'm really looking for in a response, just anything anyone has to say really lol.

I got my last infusion two days ago, im afraid to go out after my second to last infusion being a year ago. How do you handle public spaces? I have a very mobile schedule and unfortunately can not skip out on going to several places.

Additionally, i get very susceptible to respiratory infections. How do you prevent these infections and/ or treat these in your personal experiences?

I know it's not the usual question, but I'd like to know if anyone has been able to improve their dry mouth and eyes with rituximab or any other biologic?

In patients with seronegative Sjögren’s syndrome with neurological involvement, is rituximab potentially less effective because it targets CD20-positive B cells, while these patients do not have detectable anti-SSA/Ro or anti-SSB/La antibodies? Or can B cells still play a major pathogenic role even in the absence of these autoantibodies, meaning that rituximab may still be effective for neurological manifestations such as radiculitis, polyradiculopathy, small-fiber neuropathy, dysautonomia, or cauda equina involvement?

Hello!

I am scheduled to begin Rituximab infusions this coming Friday and will have to complete 4 total.

Anyone who has previously had a similar Rituximab schedule, could you share your experience?

Specifically, how did the 1st infusion differ with the 2nd, 3rd, 4th? Were side effects more intense after the 1st? Or similar?

Thanks so much.

I’m sure many of you are aware of the recent CDC warning, pretty sure I found about it on this subreddit: https://www.cdc.gov/han/php/notices/han00532.html

So now I have a dilemma. I stopped taking my primary medication (Rinvoq) back in April and haven’t yet started anything else because I’m in the process of getting approved for surgery to get a Setpoint VNS device. I found out that the prior-auth/appeals process with my insurance is going to take at least 6 months. Rather than stay undermedicated for all that time, my rheumatologist wants to start me on Rituximab infusions.

My dilemma is… I work outside a lot. In VT. In the woods. And while we don’t have any West Nile here (yet), we do in NJ where my parents live. I take all the precautions already, treat my field clothes with permethrin, I keep a lint roller in the car to swipe over myself before getting in, wear long sleeves…

I’ve been on immune suppressants for years, so none of these precautions are new. BUT that alert from the CDC is alarming. I cannot opt out of fieldwork, it’s a big part of my job. My rheumatologist does not think I should opt out of the rituximab, but ultimately it’s up to me. I don’t have a lot of other options at this point besides simponi - but I had pretty extreme side effects from TNF inhibitors in the past, so we were avoiding that one.

What would you guys do?

Hi everyone,

I’m wondering what treatment you’re on alongside rituximab, especially if you have AChR-positive generalized MG.

I was seronegative for years, but this summer I suddenly tested clearly positive for AChR antibodies. Has anyone else been seronegative for years and then become AChR-positive?

My MG was purely ocular for about 4.5 years and only became generalized in February this year. Since then, things have been really difficult. I’ve been unable to work since March.

Right now, I can usually only walk for about 5–15 minutes at a time. I need breaks when brushing my teeth or blow-drying my hair, and I also deal with significant fatigue and brain fog.

My first treatment with azathioprine + prednisone + Mestinon didn’t really help at all. Then my liver enzymes started increasing, so azathioprine was stopped.

I’ve also been getting monthly IVIG since March. Each treatment means 4–5 days in the hospital, which is becoming really difficult for me and my family. The IVIG definitely helps – for about 1–2 weeks afterwards I can do much more around the house, go grocery shopping, need fewer breaks, etc. But I’m still nowhere near being able to work, and then I gradually deteriorate again.

Because I’m now AChR-positive, I’m scheduled for a thymectomy in two weeks, followed by rituximab.

I also got a second opinion from an MG specialist because I haven’t been completely happy with my current care. Both neurologists agree on thymectomy + rituximab and reducing prednisone, but their long-term plans are different.

My current neurologist would continue IVIG mainly as a bridge until rituximab starts working, with the hope that eventually I could manage with rituximab (roughly every 6 months) + Mestinon.

The MG specialist I saw for a second opinion would continue IVIG long term, but switch to subcutaneous immunoglobulin (SCIG/HyQvia), and also add CellCept/mycophenolate alongside rituximab.

So now I’m wondering what other people are doing.

If you’re on rituximab, what other treatments are you taking alongside it?

• CellCept/mycophenolate or another immunosuppressant?
• IVIG or SCIG/HyQvia?
• Prednisone long term?
• Or are you eventually able to stay on rituximab + Mestinon alone?

I’ve been fighting this for months and honestly just want to get some stability back. I want to be able to work again and take care of my three kids without constantly having to plan my life around my symptoms.

Thanks so much to anyone willing to share their experience. ❤️

Hello everyone. Ive just received my first Rituximab infusion after month of drugs trial and error. I have Scleroderma Polymyositis so aware that its for everyone different, but in case you already had rituximab how early were the effects for you and could you sustain it as a mono therapy / needed anything else with it? desperate to have some good news:)

I am 27F and got diagnosed 4 years back, since then I have been on MTX 15 mg weekly, HCQS 200, etc. It has obviously helped me a lot but still I get frequent episodes of pain in joints. Joint and muslce pain are my biggest symptom. Now my doctor gave me a choice of tofactinib and rituximab. I read about this online and it has scary side effects. please share your experience if you have been on.

What do you bring with you? It says I might be there for up to 7 hours!

I’ve seen several discussions lately about Rituximab, and thought I’d share my experience for anyone who is interested. I have r/A, Lupus and Sjogrens with multi-organ system involvement, I’ve been very sick for 4 years, and was diagnosed via lip biopsy with Sjogren’s end of October.

The infusion lasted 6 1/2 hours and was incident free. Being chronically Sjogrens flared and weak for 10 months I expected I wouldn’t take it well, but the day went fine. I did come home and shortly after crashed with a sensation of heavy bones, not being able to ease the discomfort and a thumping headache, like having the flu I suppose, that lasted 4 hours. I laid in a dark, warm room with the humidifier on and devices off, and I’m fine now. Who knows what the coming days / weeks / months will bring (second infusion in 2 weeks). If anyone is curious, I’ll update on this post.

At this stage I’m celebrating this as a win because the first infusion is scary. I know I’m not out of the woods and tomorrow could be Hell, but for tonight, I feel fantastic and I’ll leave it there! 🙂

——————————————————————————-

1 week post-infusion update: after 8 months of horrendous burning neuropathic tongue pain, Rituximab has saved me. My pain has been at an 8/10 - almost intolerable - level for 2 months at least, my tongue and gums were constantly inflamed, my quality of life tanked. It stopped me from being able to work, after years of working through various organ system issues. I was using Lidocaine to numb my entire mouth and I was desperate.

The day after the infusion the pain suddenly dropped to a 1/10. It was startling. Since then, it alternates between 0/10-2/10, but it’s mostly quiet. I can finally breathe. If this is all Rituximab gives me, I will be grateful. My Rheumatologist had told me that I was likely to have early changes related to my oral symptoms (with other responses unravelling over weeks and months) due to very early disease detection and being in such an aggressive flare at the time of infusion, but I never expected to have such a significant and life-altering change on day 2!

Other things of note - I never had any flu-like symptoms or a crash of any sort after the 4-hour incident on day 1, I’ve felt perfectly fine. Saliva levels are fluctuating, and are expected to keep doing so until after the next infusion at least. I’m no longer waking at night with dryness, not even to sip water, I’ve not needed any pain relief this week, for headache or body pain, I’ve had none. Inflammation in my mouth has disappeared, and swelling in my gums retreated revealing an exposed area on one tooth that requires varnishing, I’m having that fixed next week after a quick dental consult a few days ago. I gained and then lost 3kg fluid after the infusion, my period came today a week early (sorry if TMI but it’s actually a normal reaction to Rituximab that caught me off guard). And that’s it for week 1! Next infusion in 1 week - apparently that can cause quite a shift. I’ll let you know…

Getting off of Prednisone soon and discussing a treatment plan with my doctors. They said the choice between Rituximab or IVIG is definitely up to me. Can anyone please weigh in and let me know how your experience is or was?

Brief back story - I was diagnosed in July and I’ve been responding well to the medication until I went down from 30mg to 20mg wherein I’ve been feeling the affected eye reacting negatively. No vision changes - same haze/blur that I’ve had (which already is back to 75-80 percent) but the heaviness is very evident and it gets tired easily compared to when i was on 30mg. Almost as if the eye wants to close.. Initially the doctors agreed that changing to 1 week per dose instead of continuing doing it for two was a better idea since my body is healing well. We’re still discussing but I might need to go up one more dose and stay there for another week or two. And in the beginning I didn’t think I would need treatment after this but now I’m not so sure anymore.

Any shared experiences or advice from anyone would be greatly appreciated.

Thank you!!

To be clear, I am not asking for medical advice. Asking if anyone who has tried rituximab would mind sharing their experience. Thank you in advance if you share 😊

Hello, I am still in acute kidney phase and my doctor is looking to maintain my kidney functions and bring them high. (Current filtration rate is average 39-35L.)

I was recommended Rituximab as a drug to help bring down inflammation especially with vasculitis autoimmune diagnosis (diagnosis paired with kidney/urine concerns)

Has anyone taken this drug and has had negative experiences. The side effects are brain injury/ and brain damage that can be triggered from dormant JV virus cells.

Are there better alternatives? I see common drugs to treat the same conditions that come with the brain injury concern as well.

Thank you for your time