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Does anyone have any experience with Rituximab?

So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken steroids. She gave me all the information about it and sent me away to read it and decide, reassuring me that it is very well tolerated. I read it and was really put off by some of the side effects (PML, cytokine storm, reactivation of dormant viruses - especially since I've had autoimmune hepatitis before). I was just wondering if anyone could give credence to or reassurance against any of these to help me make the decision.



1 Reply

I must apologise. I did reply to you some 5 days ago and included a number of articles/information. I do not understand why the post is missing.

I recommend you read the following and then write down all the questions you have. I would then return to your rheumatologist to discuss your options and to express your concerns.

No one can predict whether a drug will work or whether you will have side-effects.

If you want to talk some more, please email me: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes,


Here are some of my suggestions.

1. Information from the NHS:


What do I need to know about Rituxan® and lupus?

Dr. Richard A. Furie is Chief of the Division of Rheumatology and Allergy-Clinical Immunology at North Shore-LIJ Health Systems in Manhasset, NY. He also directs North Shore-LIJ’s Systemic Lupus Erythematosus and Autoimmune Disease Treatment Center.

See all of Richard A. Furie, MD's answers.

Developed by Genentech/IDEC, Rituxan® (rituximab) is a genetically engineered molecule derived from a mouse antibody designed to kill B lymphocytes. B lymphocytes, or B cells, are the white blood cells that are responsible, in part, for autoantibody production -- the production of antibodies against ""self"" which is the hallmark of lupus. B cells also produce certain proteins that can promote inflammation. While B lymphocytes are a chief component of the normal immune system, they are overactive in people with lupus.

Rituxan was initially developed for use in people with lymphoma (a type of B lymphocyte cancer), but the drug was subsequently approved for treating rheumatoid arthritis. Several clinical research studies looked at the use of Rituxan and a second generation antibody, known as ocrelizumab, to treat people with either lupus or lupus nephritis (lupus kidney disease). However, these clinical trials were not successful.

Many doctors still feel that Rituxan may be effective for certain manifestations of lupus and that the clinical trial failures were, in part, related to issues with trial design. A study of Rituxan as a treatment for people with vasculitis, an inflammatory condition of the blood vessels, led to approval of Rituxan for “ANCA-associated vasculitis.” Thus, Rituxan is now approved by the Food and Drug Administration as a treatment for rheumatoid arthritis and vasculitis. Rituxan may have a role for certain individuals with lupus, and further clinical research is being pursued.

Medically reviewed on July 21, 2013

3. Rituximab (Rituxan®)

There was more disappointing news for rituximab (Rituxan) and its potential role as a lupus therapy, however. Rituximab is a monoclonal antibody that depletes CD-20 B cells. Joan T. Merrill, MD, professor of medicine at the University of Oklahoma Health Sciences Center in Oklahoma City, presented data from two analyses of an ongoing trial evaluating rituximab in people with moderate-to severe lupus.

In the phase II/III EXPLORER trial, participants were taking immunosuppressants and steroids. They received four infusions over six months of either a placebo or rituximab, during which the steroids were gradually stopped. After 78 weeks, the rate of serious and minor adverse events, including infection and infusion reactions, were similar between the two groups, although there was a higher incidence of viral herpes, neutropenia and serum sickness in the rituximab group.iii

A study evaluating the subset of participants who showed a response to either placebo or rituximab found that severe and moderate flare rates were similar in both groups during the year they were followed. However, the average flare rate in the rituximab group was significantly lower than in the placebo group, suggesting that rituximab may increase the time to flare compared with placebo.iv

The results of the EXPLORER trial troubled clinicians, many of whom use rituximab for patients with lupus even though the drug has not been approved for that use yet. When asked how the results should be interpreted, Dr. Merrill replied: "while there is no evidence that rituximab works, I'm dissatisfied with the evidence that it doesn't."

And, in fact, other studies of the drug presented during the meeting show differing results.

A study in 35 African-American and Hispanic patients who received four weekly infusions and were followed for two years showed a significant drop in disease activity throughout the study in all participants, even those with lupus nephritis.v

A study in 86 peopled with lupus treated with rituximab with or without other lupus treatments for an average of 15 months found that an estimated 73% of treated patients showed improvement. Overall, 10 people had severe infections and one died from an

What this means for people with lupus? It is quite likely that rituximab works in certain populations of people with lupus. The disappointing results from the large, manufacturer-sponsored clinical trials may be related to the way the trials were designed. The decision to use or not use rituximab is one you should make in conjunction with your doctor.

4. Rituximab (Rituxan and MabThera) is a drug used to treat rheumatoid arthritis that has not improved with other types of medications as well as certain forms of vasculitis. It works by turning off a part of the immune system that is not working properly in autoimmune diseases.


Rituximab is used to treat rheumatoid arthritis (RA) that has not gotten better with other types of treatments. For this indication, it is usually given as two intravenous infusions, the second one fifteen days after the first. This can be repeated six months later.

Rituximab can be used to treat certain severe forms of vasculitis, including Granulomatosis with Polyangiitis (Wegener's) and Microscopic Polyangiitis (MPA). For this indication, it is usually given as an intravenous infusion once weekly for 4 weeks.


Rituximab is used in combination with methotrexate to treat RA that has not responded to one or more types of treatment, including anti-tumor necrosis factor (TNF) blockers. Rituximab also is used to treat certain types of vasculitis (an inflammatory condition affecting blood vessels), such as granulomatosis with polyangiitis or MPA. Occasionally rituximab is used to treat other immune problems, including autoimmune blood disorders, lupus, and inflammatory muscle diseases. Rituximab also is used in the treatment of some blood disorders, including chronic lymphocytic leukemia and non-Hodgkin's lymphoma.


Rituximab targets a protein on B cells, which are part of the immune system (the body's defense against infections and other harmful substances). B cells produce antibodies, proteins that allow the body to remove infectious or other dangerous particles. B cells also produce chemicals that help other parts of the immune system do their jobs. However, people with rheumatoid arthritis and vasculitis make B cells that do not work the way they should. These abnormal B cells do not interact properly with other parts of the immune system and can attack a person's own body even if there is no infection (which is called an autoimmune response). The autoimmune response can result in a number of different symptoms, including inflammation of the joints (arthritis), with symptoms of joint pain, swelling and stiffness. The autoimmune response can also affect blood vessels and cause inflammation, resulting in multiple problems in many parts of the body, including the skin, sinuses, lungs, and kidney. By temporarily removing the harmful B cells, rituximab can help control the arthritis, and can help control inflammation of blood vessels.


Rituximab is given as an intravenous infusion (IV or "drip") into a vein. The infusion usually takes 2-4 hours, although occasionally it can take longer. A course of rituximab for rheumatoid arthritis usually consists of two 1000-milligram doses given 15 days apart. To treat vasculitis, a smaller dose is given once a week for 4 weeks in a row.


The effects of rituximab begin about 6 weeks after the infusions. Usually by the third month, the full effect occurs, and can last up to 9 months.


Sometimes patients' blood pressure can drop during the treatment. Those who take medication to lower their blood pressure may have to stop it before the infusion.

Some patients feel mild side effects during or up to 24 hours after receiving rituximab. These usually occur with the first infusion, and can include mild throat tightening, flu-like symptoms, rash, itchiness, dizziness and back pain. These symptoms can be reduced by receiving a steroid injection before the infusion, along with acetaminophen (Tylenol) and diphenhydramine (Benadryl). The infusion is sometimes stopped for a short while and then restarted at a slower rate if the symptoms get better. Rarely, patients will have more serious symptoms, such as wheezing, mouth or throat swelling, trouble breathing or chest pain. Patients who experience these symptoms should tell their health care providers immediately; patients may receive stronger medications to treat those symptoms.

Other side effects around the time of the infusion can include headache, cough, nausea, stomach upset, sweating, nervousness, muscle stiffness, and numbness. Patients can take mild pain medications, such as acetaminophen, for them, but should call their doctors if the symptoms are severe or get worse.

In the months after the treatment, some people may notice more frequent infections, such as colds or sinusitis. Usually, these are not severe. There are a few rare but serious side effects from rituximab. These include severe skin reactions and mouth sores. There also have been several cases of a viral infection of the brain called progressive multifocal leukoencephalopathy (PML). Patients who experience vision changes, loss of balance, difficulty walking or confusion should contact their doctors immediately.


Rituximab is an infusion medication used to treat rheumatoid arthritis that has not gotten better with other treatments, as well as certain forms of vasculitis.

Patients often have a few side effects during the infusion; these are usually mild and get better with later treatments.

Patients who develop a serious infection, rash, dizziness, blurry vision, or confusion should contact their doctors immediately, even if it has been many weeks after the infusion.


Biologic drugs [including etanercept (Enbrel), adalimumab (Humira), infliximab (Remicade), certolizumab (Cimzia), golimumab (Simponi), abatacept (Orencia), tocilizumab (Actemra)] may increase the risk of serious infections and medication side effects. Blood pressure medications may increase the risk of low blood pressure during the infusion.


Tell your doctor if you have lung or heart problems, or have ever had any major infections (especially hepatitis).

Tell your health care providers about all medications you are currently taking, including over-the-counter medications, supplements, and herbal therapies. Also, tell them about all allergic reactions you have had to medications.

If you are a woman who can get pregnant, it is important to use reliable birth control before treatment and for 12 months afterward.

Since vaccines are not as effective for several months after receiving rituximab, you should ideally receive necessary ones before starting treatment or between courses.


Your doctor may have more information sheets on this medication. The American College of Rheumatology has compiled this list to give you a starting point for your own additional research. The ACR does not endorse or maintain these websites, and is not responsible for any information or claims provided on them. It is always best to talk with your rheumatologist for more information and before making any decisions about your care.

Medline Plus

ACR Patient Fact Sheet - Granulomatosis with Polyangiitis (Wegener's)

U.S. Food and Drug Administration FDA approves Rituxan to treat Wegener's Granulomatosis and Microscopic Polyangiitis

Updated February 2012

Written by S. Monrad, MD and reviewed by the American College of Rheumatology Communications and Marketing Committee.

This patient fact sheet is provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnosis and treatment of a medical or health condition.

© 2012 American College of Rheumatology


What is rituximab?

Rituximab (trade name MabThera) is a type of drug called a biological therapy. It removes a type of cell called B-cells. Some B-cells produce harmful antibodies which attack the body's own tissues. It also removes the B-cells which make useful antibodies that protect you against infection, but these return after a few months.

Why is rituximab prescribed?

Rituximab can be used for rheumatoid arthritis, lupus, vasculitis and dermatomyositis. It's also used to treat certain types of cancer.

You'll only be prescribed rituximab if your arthritis is active and you’ve already tried methotrexate and another disease-modifying anti-inflammatory drug (DMARD) such as sulfasalazine or hydroxychloroquine and at least one anti-TNF drug, or if you can’t use these drugs for any reason.

You won’t be prescribed rituximab if:

your arthritis isn’t active

you’ve not tried other disease-modifying and biological therapies first

you’re pregnant or breastfeeding

you have an infection.

Your doctor may decide not to prescribe rituximab if:

you have severe heart problems

you get short of breath very easily

your B-cell or antibody levels are low

you have seronegative rheumatoid arthritis (with no rheumatoid factor and no anti-CCP antibodies).

Common aches and pains



Arthritis and daily life

Exercises to manage pain



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Arthritis Today magazine

When and how do I take rituximab?

You’ll be given rituximab by intravenous infusion (a drip into a vein) in hospital. You may have a steroid injection first together with paracetamol and an antihistamine to reduce the chance of a reaction. The first infusion takes around 6 hours, although following infusions will be a bit shorter.

Usually two infusions are given 2 weeks apart, which is repeated when the improvement is wearing off (around 6 months to 3 years later). Many people have rituximab about once a year. You’ll need to let your rheumatologist know if your condition gets worse.

How long does rituximab take to work?

If you respond to rituximab, you’ll probably feel better within 2–16 weeks.

What are the possible side-effects of rituximab?

Most people don't have any side-effects, However, a few people experience a fever, wheeziness, a rash or fall in blood pressure during or shortly after the infusion. Occasionally you may feel unwell during infusions. If this happens you should tell the person giving you the infusion so they can slow it down. If your symptoms are severe you may need to stop treatment, but this is rare.

Rituximab affects your immune system, so you may be more likely to develop infections. You should tell your doctor or rheumatology nurse straight away if you develop any of the following after starting rituximab:

a sore throat

a raised temperature

a fever

any other symptoms of infection

any new symptoms or anything else that concerns you.

Very rarely severe skin reactions have been reported with rituximab up to 4 months after the infusion. You should tell your doctor or rheumatology nurse straight away if you develop a rash after starting rituximab.

In very rare cases rituximab can cause a serious condition called progressive multifocal leukoencephalopathy (PML), which can damage the brain and spinal cord. You must see your doctor immediately if you notice any of the following:

pins and needles


shaky movements


loss of vision

speech problems

changes in your behaviour or mood

difficulty with moving your face, arms or legs.

What should I look out for?

You should see your doctor immediately if:

you develop new symptoms

you've not had chickenpox and you come into contact with someone who has chickenpox or shingles

you develop chickenpox or shingles.

Chickenpox and shingles can be severe in people on rituximab. You may need antiviral treatment, which your doctor will be able to prescribe.

The long-term side-effects of rituximab aren’t yet fully understood because it’s a relatively new drug.

Remember: If you develop any new symptoms or you have any concerns about your treatment, you should discuss this with your doctor, rheumatology nurse or pharmacist.

What are the risks of taking rituximab?

After 3 or 4 courses of rituximab, the levels of useful antibodies in your blood (the ones that protect you against infection) may go down. This may not be a major problem, but it might mean that repeated courses increase your risk of infection.

How can I reduce the risk of infections?

Because of its effects on the immune system, rituximab may make you more likely to pick up infections. You should avoid close contact with people with severe active infections, and visit the Food Standards Agency website for information on reducing your risk of infection from foods.

Will it affect vaccinations?

Because rituximab affects your immune system, it’s best to have any vaccinations before treatment, or in between courses when your B-cells have come back. You should discuss this with your rheumatologist, GP or rheumatology nurse specialist.

If you’re taking rituximab it’s recommended that you avoid live vaccines, including the chickenpox vaccine. However, in certain situations a live vaccine may be necessary (for example rubella immunisation in women of childbearing age), in which case your doctor will discuss the possible risks and benefits of the vaccination with you.

If you're in your 70s and are offered shingles vaccination (Zostavax) your doctor may advise you to have this before starting rituximab. Shingles vaccination isn't recommended for people who are already on rituximab.

Pneumovax (which gives protection against the most common cause of pneumonia) and yearly flu vaccines should be given at least one month before a course of rituximab.

Can I drink alcohol while on rituximab?

You can drink alcohol while on rituximab but keep within the recommended limits (2–3 units per day for women and 3–4 units per day for men). If you’re also taking methotrexate, you should keep well within these limits because methotrexate and alcohol can interact and damage your liver.

Does rituximab affect fertility or pregnancy?

We don’t yet know how rituximab might affect an unborn baby. You should take care to avoid becoming pregnant for 12 months after treatment. You shouldn’t have rituximab during pregnancy.

Men who are on methotrexate as well as rituximab should avoid fathering a child for at least 3 months (and some doctors advise 6 months) after stopping treatment as methotrexate can affect sperm and thus a fertilised egg.

Does it affect breastfeeding?

Rituximab is an antibody that can be passed on in breast milk. You shouldn’t have rituximab if you’re breastfeeding, and shouldn’t breastfeed for 6 months afterwards, because it might affect your baby’s immune system.

What else should I know about rituximab?

If you’re prescribed rituximab it’s recommended that you carry a biological therapy alert card, which you can obtain from your doctor or rheumatology nurse. Then if you become unwell, anyone treating you will know that you’ve had rituximab and that your antibody levels may be low.

Remember: If you would like any further information about rituximab or you have any concerns about your treatment, you should discuss this with your doctor, rheumatology nurse or pharmacist.

Are there any alternatives?

A number of other drugs are used in the treatment of rheumatoid arthritis and related conditions. Your doctor and rheumatology nurse specialist will discuss these with you.

Will I need any special checks while on rituximab?

You’ll have blood tests to check your antibody and possibly your B-cell levels before treatment and every few months afterwards.

Rituximab may increase the risk of the hepatitis B infection being reactivated in people who carry the virus. If your doctor decides that you may be at risk from a previous hepatitis B infection, they may test your blood for the presence of hepatitis B.

Can I take other medicines alongside rituximab?

You may be prescribed rituximab alongside other drugs, including methotrexate. Discuss any new medications with your doctor before starting them, and always tell any other doctor treating you that you've been treated with rituximab. You should also be aware of the following points:

Rituximab isn’t a painkiller. If you’re already on a non-steroidal anti-inflammatory drug (NSAID) or painkillers you can carry on taking these, unless your doctor advises otherwise. If rituximab works for you, you may be able to reduce your NSAIDs or painkillers after a time.

Don’t take over-the-counter preparations or herbal remedies without discussing this first with your doctor, rheumatology nurse or pharmacist.

Can I continue with rituximab if I’m going to have an operation?

Yes, but planned (elective) operations are usually scheduled at least a month after your last infusion.


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