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Here is My Question:
I have been on Rituxan since Oct. 2014. My initial dose was 1,000 mg. I had a second infusion in April 2015. I was diagnosed in 2006, with one relapse approximately two years later. I was on Copaxone for about three years, at which time I switched to Tysabri for 46 months, until I converted to JC+ and went onto Rituxan. My MRI's are stable, showing no new lesions, no activity. I have no new symptoms. I will be 60 soon, and would like to consider the possibility of not staying on a DMD the rest of my life. i have made major changes in my diet, exercise regularly, have a meditation practice and in general do whatever I can to support my health and healing. I see a very well known MS doctor out of state, and I have my MS doc in state who supports my being on Rituxan. One doctor has suggested I do my Rituxan infusion every six months. The other doctor has suggested I wait until my b count has repopulated to 25% of what it was prior to my first infusion and then do my infusion. Given what I have shared, what would you advise and why? If you need more information to answer my question, please advise. Many thanks for this web site, and all that your provide for the MS community. Answer: There is no standard practice for Rituximab dosing intervals in MS patients. I can provide you with some guidelines but my answer will first assume that your MS was of sufficient severity to warrant both Tysabri and rituximab. If this assumption is correct it is probably not reasonable to consider getting off of treatment altogether. We do not currently have a useful biomarker for monitoring dosing intervals with Rituximab or any anti-CD20 monoclonal antibody in MS patients. Traditionally, rituximab is dosed at 6 month intervals based on studies in rheumatoid arthritis (RA) patients. The 1000 mg dose completely deletes CD19 B Cell counts in 97 % of patients for a mean of 8 months. Different types of B cells return at different rates and it is not at all clear which type of B cell must be suppressed to have a positive treatment effect in MS. Disease activity tends to return within 2 months of the return of total B cell counts in RA patients, but there is a lot of variability. In the few MS studies done so far, there is no clear relationship between the return of B cell counts and the return of disease activity. My experience suggests that prolonged treatment with Rituximab causes a cumulative more sustained reduction in B Cell counts and an MS patient on treatment every 6 months for 18-24 months can begin to lengthen the interval between treatments over time. Overall, three approaches have developed to manage this issue: 1. Treat regularly every 6 months. If you take this approach there is not a good reason to even measure CD 19 counts 2. Treat to a target. a. The target can be a return of disease activity, but I do not favor this approach given the current safety profile of Rtuximab b. Treat until B cell counts begin to return. A 25 % return in B cell count is a reasonable approach. Using this approach I find myself retreating MS patients every 6 to 12 months when using a dose of 500 mg to 1000 mg Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Thanks to everyone who contributed to the HealthCare Journey team at Muckfest 2015. It was a great success!!!
Here is My Question:
In January of this year I started having a sore neck like I had slept on it wrong, a kink. The first of February I started having numbness in my left hand and a feeling of electricity from the base of my skull running down my spine and across my trapezia muscles, like someone had touch my spine with a low voltage electric wire. Then on March 18th while at work my left arm from my fingertips all the way up to my left earlobe went numb, pins and needles, lack of coordination. I wasn't able to use it to pick up anything at all. The next day I went in to see my GP, and I was sent to get xrays. I was told that it was probably a pinched nerve. The xrays came back with a narrowing of the cervical foramen but not enough to cause this much numbness so, he sent me for a cervical MRI w/wo contrast. The results showed a lesion on my spine. Due to the lesion the GP sent me for a brain MRI w/wo contrast. The brain MRI showed no lesions so, the GP told me that no brain lesions ruled out MS. Then I was sent to a neurosurgeon to see what to do about the narrowing of the foramen and the spine lesions. The neurosurgeon did a thorough neuro exam and then told me that he believed that I did have MS and he wanted to do an LP. He did the LP and bloodwork. One week later he told me that I have MS. That was April 29th. I have my first appointment with a neurologist on August 5th. No that I have told you my MS story my question is, in 1998 I was diagnosed with RLS due to spasms in my legs, I was prescribed Requip. Since I started on Requip they have increased my dose from .25mg Q HS to 4mg BID because I get the spasms all during the day and night. Since the diagnosis of MS I have been wondering if the RLS is really MS symptoms? Could the legs and arm spasms be MS and I am taking a high dose of medicine that I don't really need.????? Thanks for any help. Answer: It sounds like you’ve experienced a subacute partial transverse myelopathy (PTM). This means you have a problem that developed over several weeks involving one segment (i.e. transverse) of your spinal cord (i.e. Myelopathy) but not the entire segment (i.e. partial). If the neurosurgeon did a lumbar puncture and thought this was MS, then we call this a partial transverse myelitis. This means the problem in the spinal cord is due to inflammation if all the information is correct. You did not mention if you are getting worse. If you did not spontaneously get better, we usually treat this problem with high dose intravenous corticosteroids, if you have no contraindications. There are several causes of a PTM besides MS so you do need a prompt evaluation by a neurologist. Your age and circumstances and other features you may not even be aware of will help the neurologist determine if this is likely caused by MS or something else. So don’t miss your appointment next week. I am a little unclear on the restless leg syndrome (RLS) diagnosis. Just so we are clear RLS is defined as an irresistible need to move your legs when you are still, much worse at night, because of an unusual discomfort in the legs often described as creepy crawly sensations, tugging, pulling or even pain. To be RLS the discomfort must also cease or significantly decrease shortly after assuming some movement or activity (e.g. getting up to walk or moving) to be characterized as RLS. Many people with RLS also experience periodic limb movements during the night that interfere with sleep. These are sudden involuntary twitching or jerking movements that lead to frequent awakenings and cause daytime sleepiness. Muscle spasms at night are different than RLS, but are often confused with RLS, especially in people with problems involving their spinal cords. Spasticity is an increase in muscle tone that creates stiffness with movements that is worse the faster you try to move, particularly with walking. People with spasticity can experience involuntary muscle spasms in the legs that usually get worse when they lie down supine (flat), especially at night when they go to sleep. These can be painful and can cause either forced straightening of the legs or flexion (pulling up into a fetal position). This is not RLS. Both nocturnal leg spasms and RLS can occur in MS patients but we treat them differently. Good luck and let us know what happens. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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