Rituximab in Myositis

I had some Rituxin treatments in 2005 to address very low blood platelet counts. Two and one-half years later I was diagnosed with Inclusion Body Myositis (IBM). What other conditions are treated with Rituxin? Could the Rituxin treatments have triggered my IBM condition?

What are the side effects? Pls don’t say none. All medicines have some.

I have used rituxan with methotrexate on board for several years with great results. I have recently quit taking the methotrexate with the advice of my rheumatologist since most symptoms have diminished. Will the rituxan work on it’s own? I am scheduled for another infusion in February.

I have had four(4) treatments of rituximab of twice each time spaced two weeks apart, with relapses between each. My last treatment was 18 months ago and I am currently without symptoms or adverse test readings. Should I consider a maintenance treatment or merely continue periodic testing until either symptoms or test results begin to worsen?

I’ll start with a brief histoy, diagnosed in 2007 with polymyositis/mixed connective tissue disease CK 13000 with significant weakness. Went from full time labor nurse to bedridden at home in hospital bed. I am now 64yrs old. I have been treated with prednisone (currently taking), methotrexate ( stopped because of elevated liver enzymes), azathioprine (stopped because of neutropenia), currently on IVIG 80 grams daily x 3 days every 6 weeks which controls symptoms and CK.

I am very aware, though of when my dose is due i.e.: harder to get off chairs less stamina etc. My doctor recently added cellcept, but is worried neutropenia may again develop. My doctor is also concerned insurance will deny IVIG soon ( been on it 2 years). With all of that in mind Rituxan may be my next option. My concern with it are side effects. Am I at increased risk because of age? risks of activating the JC virus?? Is it worthwhile to be tested for the JC virus prior?? Is knowing if someone is Anti SRP positive worthwhile in perhaps determining if my case is in that resistant category which Rituxan may help? Thank you for your time.

I wonder if there is any aspect, even minor, regarding this study that might be of interest to those of us with IBM. Otherwise it would be of only academic interest.

I have dermatomyositis with ILD. How has this Rituximab helped with patients who have ILD?

Hello I dermatomyositis for almost 12 years I have never used rituximab, but once only infliximab and I had anaphylactic shock reaction. Can I try rituximab?

I read that there seems to be a particularly strong effect of rituximab for those with anti-Jo-1 antibodies. Could you please discuss this impact further.

What range should various measures of myositis show before trying a new treatment?

I am a 73 year old female diagnosed with polymyositis in 2002. I have had 14 infusions of Rituxan in the past 4 years in addition to prednisone and cellcept medications. Muscle strength is continuing to deteriorate. With the start of IVIG octagam infusions in October 2012, can I expect any benefit from continuing the Rituxan?

Dr. Oddis, my wife who has PM, received her first and only infusions of rituximab in June 2011. Now, eighteen months later, her CPK is still holding well under 120. She takes a combination of daily azothioprine and once per week methotrexate. She currently takes no prednisone. We are very pleased with these good developments. My question is: What is the average length of time for the rituximab to continue working in relatively healthy 56 year-old women?

I have had polymyositis for 4 years now. I have taken prednisolone, methotrexate, azathiopine, mycophenolate mofetil, mycophenolate sodium and IVIG. Last year around November i had a relapse and my doctor asked me to take rituximab. I refused taking and after a while I picked although I still walk with a walking aid to enable me climb stairs but now my muscles I weak its almost difficult for me to get up from a chair. Do you think i need to take rituximab and if i do will it take care of the muscle weakness and prevent me from having another relapse?

Dr. Oddis, I am a 65 year old male diagnosed with IBMs in 2009 by biopsy. Is there any connection between s-IBM and Lyme disease. I spent much time in the outdoors most of my life.

Is this drug good for people who have an overlap of dermatomyositis (skin problems) and Lupus?

Hi Dr. Oddis, I was a subject in the RIM study and had considerable improvement of DM symptoms after receiving Rituxan in 2008. I was re-treated during a relapse in 2010 and my muscle strength improved again, but I had a severe SJS-like skin reaction. Now that I won’t be able to take Rituxan again, I’m interested to know your expert opinion on current treatment options I should consider if necessary. Thank you so much for continuing your active role in TMA and taking time to answer our questions today.

I was wondering if any study has been done to see if going on a gluten-free diet can alleviate the adverse symptoms from Dermatomyositis and Polymyositis of which I’m experiencing both ailments since 2008. I’m asking because I’ve read going on a gluten free and/or even vegan diet has helped other immune problems like Lupus and Sjogren’s Syndrome (both of my siblings suffer from one of these symptoms). I did my own test since July and noticed a difference. Not only did I drop 20 lbs but my finger tips didn’t profusely cut and bleed but started to heal. It didn’t heal completely but I noticed some relief. Also my breathing seemed to stabilize (Polymyositis affects my lungs). I’m currently on 2000mg Cellcept, 5 mg Prednisone and 400mg/80mg Bactrim. I’m a 54 year-old Asian female.

I’m a yoga teacher suffering from Dermatomyositis where it affects my fingertips (constant splitting/peeling of skin to the point it bleeds). It’s so bad that I have to wear the medical gloves or finger tip latex covers throughout the day and evening hours to keep the cuts from being exposed to the air as the band aids just keep falling off. One of my students (from Bosnia) brought me a tube of Flogocid mast which you can only get from there. She said to try putting it on my finger tips to see if it alleviates the problem as it has helped her with other skin problems. I have to say that it does give me relief. The finger tips stay moist instead of drying, splitting, cracking but it requires me to use it all the time but I don’t want to because I read that this cream was actually for vet medicine and not for human use. Yet, if you read the blog for this cream, many have said it has helped them. Just curious if you have ever heard of this cream. http://www.flogocid.com/what_is_flogocid.html

I have PM/ILD for 2-1/2 years. I take 3mg prednisone every other day and 2,000 mg of Cellcept. Is Rituximab recommended for ILD over IVIG? Is Rituximab the same as Rituxan? If the ILD were to get worse, do you add this drug as a 3rd line drug or replace Cellcept? Thanks so much!

Why isn’t this treatment also effective for Inclusion Body Myositis?

When would rituximab be recommended in treating PM if I have been successfully treated thus far with methotrexate? I know that I could have potential liver side effects under current treatment. Are there any side effects possible with Rituximab? Thank you.

I’m a patient who has had 51 IVIG treatments over the past 6 years at 1.6g/kg body weight plus methotrexate and sometimes plus low dose prednisone. CK is 1300. The rashes for my dermatomyositis look most like anti-Mi2 but the auto-antibody test has not been done. We’re now going to try rituximab. Hopefully rituximab on its own will be enough. Questions: 1. If necessary, can IVIG and rituximab be used together? 2. If so, what would be the timing of the doses? 3. Would full doses be used?

Is there any medication for IBM? I am 77 female and getting really difficult to walk. Fell 2 weeks ago hit my head on cement wall. Lower back very painful.

I have been taking Rituxan every 6 months as treatment for DM, along with prednisone, starting in February 2012. Is there any way to know if Rituxan is safe to use as long-term primary treatment (for years to come)? Or does the risk for PML or other side effects increase with each treatment? How safe is Rituxan as a long term treatment for DM?

There has been a lot of publicity recently about some work done at the McGowan Institute at the University of Pittsburgh involving muscle regeneration. The work involves implanting an extracellular matrix where muscle growth is needed. The matrix attracts the body’s own stem cells which cause regrowth of the lost muscle cells. Do you think this could have implications for treatment of myositis and other muscle diseases?

There was no response for the app so I am resubmitting my question. I have read about successful muscle regeneration done at the McGowan Institute at the University of Pittsburgh. An extracellular matrix is inserted where muscle growth is needed. The matrix attracts the body’s own stem cells which replace the muscle which was lost through injury. This has worked in cases where severe muscle loss left the patient seriously disabled. Could it be used for muscle diseases such as myositis?

How long should the conventional treatment of prednisone and Methodrexate be continued before trying rituximab? Example: after one year of treatment,I am now down to 10mg. prednisone and 7.5 methotrexate.

Hello, I have had PM for 4 years. At my worst my CPK was 9500 and I couldn’t even roll over in bed. I was on high doses of prednisone that did nothing. Imuran made me very sick. About 18 months ago I started taking IVig and it has been a near miracle. I can function again. But I still have trouble getting out of chairs, off the floor, and up/down stairs. My CPK is running between 600 and 900. My rheumy thinks I can be even better if I switch to Rituxan. I am scared of the Rutuxin and its side effects and wonder if I should continue to be happy on IVig. My question is, what are the risk/benefits of Rituxin and have you seen significant improvements in individuals who were receiving good results from IVig?

Will there be RIM trials in CA?

I have heard patients in remission after Rituxan. What % of patients end up in remission after Rutixin? How many treatments necessary to end up in remission?

Dr. Oddis, Does this drug help relieve the pain, itching and sores which are a result of the derma part of myositis?

Hi Dr. Oddis, Is there evidence that rituximab improves lung function in patients with polymyositis related interstitial lung disease?

How successful has rituximab been for patients who do not do well on prednisone and relapse? Thank you for ALL your hard work and sacrifices on our behalf.

Is there a difference between rituximab and rituxan?

Dr Oddis, if necessary can rituximab treatment be combined with IVIG treatment? Would the full doses be used of both or reduced doses?

Dr Oddis, is there a way to view an executive summary of the study?

How long should I stay on Prednisone/Methotrexate combo treatment before trying rituximab?

Can you address why some insurance companies will not pay for rituximab ?

I have had DM for three years, took prednisone and methotrexate for last three yrs. Finally off both. been taking imuran for last year, still on it 150mg/day together with IVIG for last year. IVIG helps. I am stable. My doctor does not do CPK tests. Is that ok? He feels my strength and says I’m doing well, I feel the same. At what point should I consider Rituxan. Has Rituxan worked DM patients out of any more drugs who are basically in remission?

I have Antisynthetase Syndrome with polymyositis and ILD. I am currently waiting for approval to go on Rituximab. I have heard that the potential severe side effects possible with this drug are less prevalant when used on the autoimmune diseases as compared to it’s use on other diseases. What is your opinion on this?

Can you summarize your study? I am told that I’m in a crossover stage from PM to IBM. Diagnosed 4/10/2010. Thanks for all you do!!

Dr Oddis, when is it appropriate to consider using Rituxan for treatment of PM and DM? Would it be used after trying normal treatments like prednisone, imuran, methotrexate, and even IVIG? Or are there indications that would make Rituxan the treatment of choice?

How does Rituxan work in myositis patients? Is this something that a PM patient would have to take for the rest of their lives? What can one expect for results taking the drug?

Not sure if this question was submitted in time…so please bear with me to re-submit. I have anti-syntetase syndrome with ILD, also very poor reaction to even low doses of prednisone and have relapsed twice. Dr. is considering rituximab as next course of treatment. Is this a good idea? MANY thanks for your sacrifices and hard work to help all of us!

Dr. Oddis, would myositis patients be able to try one infusion of Rituxin instead of two per treatment as I read RA patients may try?

What considerations should a DM/PM patient make when deciding with their doctor if rituximab or IVIG is the better option for treatment when other treatments fail?

Hi Dr. Oddis, my husband is a 56 year old man diagnosed with PM, Anti-Jo 1 in 2009. He was on prednisone and Cellcept. His muscle enzymes are good, but lung function is deteriorating. He has been on Cytoxan for the last 2 months and lung function continues to deteriorate. DLCO in Feb 2012 was 70%, yesterday it was 43 %. Do you think it is at least worth trying rituximab to improve his lung function?

Would you say that in most cases Rituxan to be better, longer lasting than IVig for DM for a 40yr male?

Dr. Oddis, based on the questions there is much discussion about PM and other muscle disease but not much about DM. Is this drug used solely for DM or must the muscles be involved also?

Doctor, I am doing well on IVig but not completely in remission. I still have CPK 600-900, and still have problems in getting out of chair, stairs, etc. Since IVig has improved me significantly, should I stay with it or see if RituxAn would make me even better?

I was recently diagnosed with CADM after a year-long skin flare. I am on prednisone and tapering to plaquenil. I had a similar CADM flare 8 years ago after the birth of my first child, and it spontaneously resolved after one year (after I weaned, no meds). How often do you see spontaneous remission in CADM? Also, I am also allergic to nickel and have noticed the DM rashes on my hips are associated with/aggravated by metal grommets on jeans. Is there any correlation between metal allergies and DM? Could metal allergies be the cause of the chronic inflammatory state?

I have had PM for five years, am currently in remission except for residual interstitial lung disease which at times is quite debilitating. Prior treatments of rituximab always cleared this up. Should I consider a treatment for this reason alone?

What does the acronym PML mean?

Hello Dr Oddis, I was diagnosed with Antisynthetase Syndrome and BOOP last year. My doctors decided to treat the BOOP first with prednisolone, which took a year. Since mid September this year, I’ve been on an immunosuppressant (Imuran) to treat the antisynthetase syndrome. My condition has worsened since with more intense and prolonged joint stiffness and pain, muscle inflammation and weakness, and frequent appearance of “mechanic’s hands”. My rheumatologist mentioned in passing rituximab as a possible treatment option. Would rituximab help in my case of antisynthetase syndrome? If it would, what exactly would it do?

Can you give any conclusions of the study today?

How long after a Rituxan infusiuon should a patient know if it has been effective or not? Is two infusions still the standard treatment?

Dr. Oddis, I’ve had PM, probably since 2000, but diagnosed 2008. Sjogren’s also probably since 2000, but diagnosed 2005. Currently on Hydroxcloroquine, 200 mg/daily, and methotrexate injections, 0.4 cc/weekly (I think it’s about equal to10 mg). Believe my CPK is in normal range, though still have significant muscle weakness, Last muscle testing was “stable” per neurologist. What would you think about my going off methotrexate as a trial? My rhumatologist says not a good idea, but what do you think? I know this question isn’t about rituximab specifically, but just a treatment question, if you don’t mind.

Dr. Oddis, Is rituximab used in conjunction with other drugs or is it a treatment used by itself?

Have there been any positive effects of rituximab on those with ADM? Is there any indication that a negative response to IVIG (asceptic meningitis twice) may mean a negative response to rituximab?