Welcome to the Virtual MS Center!
Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
I am 70 and Negative for JCV Virus. My doctor wants to take me off Tysabri (I have been on for approximately 13 years. He wants to take me off cold turkey. Is that Safe? Will I experience significant breakthrough symptoms? Should I be weaned off rather than cold turkey? Any suggestions would be so helpful. Answer: This is a difficult question to answer without more detailed information. To begin with, it is unusual for people who are 70 to still be taking disease modifying therapies. Let me give you some information to help you discuss this question with your MS doctor. Rebound relapses after stopping Tysarbi,
Good luck Revere P (Rip) Kinkel, MDProfessor Emeritus Neuroscience Department University of California San Diego Here is My Question:
Hi there, so I passed my NREMT and am now able to get certification to work as an EMT. I am not in shape so I've been working out gently. I was diagnosed with MS last year and during the summer last year I started having difficulty walking. It was like tingling like my leg fell asleep except it hurt and would only stop if I stopped walking or sat down (sometimes it didn't always work then). I've noticed that I have issues with going up stairs on a daily basis and walking at a consistent pace. It's not that I feel those tingles though, it's just painful to move. All of this being said, I would really like to see myself move past this and do something I want to do by being an EMT. Even if I condition my body for the job, is there any reason I should not pursue this job? Answer: I am not able to determine if it is feasible for you to perform the duties of an EMT without knowing a lot more about you and your condition. If you have the ability to see a rehabilitation medicine (a Physiatrist) specialist where you live who has expertise in MS, this would be a useful person to see for assistance. By all means reach out to your MS specialist for advice, if you have one, or discuss this issue further with your current neurologist. Neurologists see people with mobility issues on a daily basis and are trained to assist them in meeting their goals of care, including maintaining their desired employment if feasible. Good luck Revere P (Rip) Kinkel, MDProfessor Emeritus Neuroscience Department University of California San Diego Here is My Question:
I'm an MS patient who's currently being treated with Tysabri. I've been reluctant to switch because I'm prone to side effects and was relived to have finally found a drug that allowed me to have a decent quality of life. I'm JCV positive and have been for some time, so my neurologist wants me to switch to Ocrevus (though we extended my dosing times which lowered my JCV numbers). Here are my questions. Am I taking too much risk trying to stay on Tysabri with positive JCV numbers?~Are there any doctors who would continue to prescribe Tysabri to someone who's been on it for over a decade and is JCV positive? Thank you! Answer: This is a tough question that we have answered many times on this site. The decision really comes down to relative risk and individual choice. The main risk factors for PML in people on Tysabri for MS include
The risk factors for continued MS relapses are younger age (< 50) and relapses or MRI activity in the year prior to starting Tysabri. We have registry data suggesting a markedly reduced risk of PML in MS patients taking Tysabri on extended dose intervals (usually 6-8 weeks between infusions) but these patients were not separated by JCV index status. A study run by the drug maker of Tysabri did show equal effectiveness of every 6-week infusions versus the usual every 4-week infusions as long as participants received every 4-week infusions for at least a year before extending the dosing interval. We also know that stopping Tysabri is associated with approximately a 30 % risk of relapse, so we always give a single cycle of anti-CD20 infusion (i.e., Ocrevus or rituximab usually) within 8 weeks of stopping Tysabri to prevent relapse. Overall, if people have been stable on Tysabri for many years (like you), are JCV Index positive, and are over age 55, we will often recommend a single infusion of Ocrevus or Rituximab after stopping Tysabri to prevent rebound relapses and then monitor them off of all treatment for any return of disease activity. Before giving them the infusion of Ocrevus or Rituximab, we make sure there is no evidence of presymptomatic PML. We only continue the anti-CD20 therapy infusions or injections in the listed circumstance, if people show a return of disease activity following the initial infusion I hope this helps. Please discuss these thoughts with your MS specialist Here is My Question:
Hello, I'm curious to know what labs are taken and looked into prior to next round of Rituximab (or b-cell depleting medication in general)? What is normal/concerning? What is tested? What will be something that would post pone infusion? Etc. I hope I'm making sense. Thanks in advance Answer: Excellent question. The FDA approved package insert only requires labs prior to the first infusion and includes a Hepatitis B serological profile and immunoglobulin levels. Since we know that treatment may cause immunoglobulin deficiency and other abnormalities in blood cell profiles and these deficiencies increase the risk of infection, most centers routinely obtain a complete blood count and differential (CBC with diff) and Immunoglobulin levels before each infusion. Most centers also check total CD19+ B cell counts before every treatment, although this is probably only necessary prior to the first treatment if you plan to receive infusions every 6 months according to the FDA approved dosing interval. If you plan to shift to extended interval dosing, an increasingly common practice to avoid prolonged B cell suppression, then you should get B cell counts or better yet, complete B cell subsets, prior to every infusion. This could then be used to guide when to repeat infusions. So to recap, minimal labs prior to every infusion are CBC with diff and Immunoglobulin levels, particularly IgG levels. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego The relative safety of surgical vs medical pregnancy termination depends on the stage of pregnancy. Generally, early termination, which is part of the indication for drug-based abortion, is very safe with drug-based abortion (i.e. mifepristone plus misoprostol). Medication abortion is indicated up to 77 days (11 weeks) after the first day of your last menstrual cycle. There are some contraindications to medication abortion including chronic corticosteroid usage and ectopic pregnancy but most of these contraindications are rare. You should definitely talk to your primary care or OB/GYN doctor about your options before making any decisions.
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego What is the likelihood that I will have another attack especially now that I’m on a DMT?6/11/2024
Here is My Question:
I had an attack in November - a single thoracic spinal lesion was found and apparently lots of bands in my spinal fluid. No brain lesions. This was immediately following a round of IVF. Now being treated with Tysabri. My neurologists feel sure that this is early MS, but another neuro thinks it could very well have been a one time event. Two questions? What is the likelihood that I will have another attack especially now that I’m on a DMT? And do you think this could have been caused by the drugs in IVF stimulation medications? Answer: By 2017 diagnostic criteria (not by prior criterion), you currently satisfy the minimum requirements for a diagnosis of multiple sclerosis. Your risk of relapse is very low on treatment with natalizumab (Tysabri). A recent case control study from Denmark suggests that assisted reproductive technologies (including IVF using hormonal stimulation) do not increase the risk of developing Multiple Sclerosis. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
My son's neurologist recommended Ocrevus for PPMS 6 weeks ago. No reply from insurance company. Is this delay normal or cause for concern? Answer: Delays in obtaining approval for an indicated MS treatment are often caused by understaffed, overburdened Doctor's office personnel not having the time to respond to insurance requests to provide prior-authorization documentation. Contact the doctor's office to see if they've received any requests from the insurance company for further information. If they have not, contact the insurance company to learn the status of the request. Good luck Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
I am taking the mini-pill and forgot to take one the previous day (took the two as soon as I realized today) Is it still okay to take the morning after pill? Additionally I am still on my period this month. Thank you in advance for your assistance. Answer: If you miss your regular oral contraceptive pill by 24 hours and double up on your next oral contraceptive pill (take 2 pills), you do not need the morning after pill. I would check with whoever prescribed your oral contraceptive. Some people are on other medications which decrease the efficacy of oral contraception, and if this is the case your doctor may have other recommendations. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Can I talk to a doctor online. I have severe agoraphobia? Answer: Most doctors are still doing video visits . The only requirement is that you must be present in the same state as the doctor. For instance, a person in Texas cannot have a video visit with a doctor in California, but a person typically living in Texas who is visiting California can have a video visit with a California doctor. Most doctors also want a referral from your regular doctor and would benefit from your medical records and images, if they are available. Formal telemedicine is organized differently and allows doctors to participate in care outside of their state. Far fewer doctors participate in these nationwide networks. Video or telemedicine visits cannot accomplish as much as an in-person visit. The examination is lacking and that is a drawback in Neurology. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Would the serum band of 4 be considered MS? Answer: I believe you are referring to a lab report on the presence or absence of oligoclonal bands in the CSF and Serum sample collected at the same time. These reports sometimes provide the number of IgG bands in both the serum and spinal fluid (CSF) using a technique called isoelectic focusing. When we say a person has oligoclonal bands in their CSF, we are referring to bands without a homologous band present in the serum sample. Therefore, the presence of serum bands has no relevance to the diagnosis of MS. Only the presence of spinal fluid (CSF) bands without matched serum bands are relevant to the diagnosis of MS. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Does MS causes burning mouth syndrome? Answer: It would be extremely unusual though possible for MS to directly cause anything akin to burning mouth syndrome. Many of the causes of burning mouth syndrome are more common in MS patients, so indirectly this syndrome may be seen in people with MS. These causes of burning mouth syndrome include nutritional deficiencies, medications (including those causing dry mouth), Sjogren's disease and some viral illnesses. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #burningmouthsyndrome Here is My Question:
Is MS a progressive disease? Answer: This is an excellent question. I think many people tend to use imprecise terminology when describing clinical features of MS. Let me give you a framework for many of these common terms.
The main problem with the casual use of these terms by both lay people and professionals is that they often are used for other purposes. For instance, the fact that MS is a chronic disease (i.e. it never disappears completely) is often confused with the concept of disease progression. While many people do develop progressive disease as defined in # 4 above, at least 25 % or more never develop evidence of progressive disease despite the chronicity of their condition. I hope this helps Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis Here is My Question:
Now that Ocrevus has been out for a while and we have more information, do you think it is more effective than Tysabri? I recently read a study saying Ocrevus and stem cell transplant were similar in efficacy. The authors cautioned that there was only 3 years of data. Still, pretty impressive. Also, what is the risk of jc positive person transitioning from Tysabri to Ocrevus in regards to PML? I know there should be a MRI before starting Ocrevus. Answer: There are no randomized head-to-head comparisons of Ocrevus and Tysabri adequately powered to answer your question. Smaller observational comparisons suggest little difference in comparative efficacy in people with relapsing remitting MS. Both therapies compare well to the efficacy of Hematopoietic Stem Cell Transplant (HSCT), but with far fewer risks and side effects. Many JCV positive people with MS eventually switch form Tysabri to Ocrelizumab (Ocrevus), Rituximab, Ofatumumab (Kesimpta) or Ublituximab (Briumvi); in fact, the most favored treatment option after discontinuing Tysabri is treatment with one of these anti-CD20 monoclonal antibody therapies. Before switching it is important to exclude pre-symptomatic PML with a repeat MRI scan. Switching to an anti-CD20 therapy also dramatically reduces the risk of a rebound relapse after stopping Tysabri. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #Ocrevus #Tysabri Question: Can you look at case studies for dupixent in MS and comment on them?
Answer: Dupilumab (Brand name Dupixent) was approved for the treatment of atopic dermatitis (i.e. eczema) refractory to topical therapies (i.e. applied to the skin) in 2017 and for adjunctive treatment of asthma in 2018. It is also indicated for treatment of chronic rhinosinusitis with nasal polyposis, eosinophilic esophagitis and prurigo nodularis (another skin condition). Dupilumab is a monoclonal antibody therapy that inhibits signaling of 2 cytokines (IL-4 and IL-13) known to be associated with these aforementioned conditions. According to recent posts by the manufacturer (Regeneron) there are over 800,000 people treated with Dupixent worldwide. The current FDA package insert does NOT include any warnings regarding the use of Dupixent in people with multiple sclerosis. A review of the literature in PubMed reveals 5 case reports (3 in a single publication) since 2021 of the use of Dupixent in people with MS. Case report 1 (Laageide L et al. JAAD Case Reports 2021 Sep; 15: 33–35) describes a 34-year-old woman with undiagnosed multiple sclerosis for a year who began Dupixent 2 months before an MS relapse and 4 months before her Multiple Sclerosis Diagnosis. She was not on a disease modifying therapy until after her diagnosis with MS . Dupixent was stopped and her MS was controlled with ocrelizumab. Case report 2 (Gelato F et al. Dermatol Ther 2022 Oct;35(10):e15740)doi: 10.1111/dth.15740)) describes a 21-year-old with severe atopic dermatitis started on Dupilumab in January 2019 with excellent results. However, after 1 ½ years on Dupilumab treatment he began to experience symptoms of multiple sclerosis (onset July 2020) which was diagnosed in September 2020. Treatment with dupilumab was stopped and his multiple sclerosis was controlled with natalizumab (Tysabri) Case report 3 (Esposito M, et al. JAAD Case Reports 2022 Nov 5:31:1-5. doi: 10.1016/j.jdcr.2022.10.031) describes three people with well-established MS, ages 47, 53 and 60, who received Dupixent for atopic dermatitis while receiving teriflunomide (brand name Aubagio) to treat their Multiple Sclerosis. None of the patients experienced a relapse or worsening of MS symptoms on Dupixent and their MRI scans remained stable. The authors of case reports 1 and 2 advised caution when using Dupilumab in people with MS. They hypothesized that inhibition of Th2 responses through inhibition of IL-4 signaling in susceptible individuals may aggravate Th17 mediated immune responses commonly associated with certain forms of autoimmunity including MS. It is important to note that both case reports 1 and 2 describe young, undiagnosed people with MS who started dupilumab before starting a disease modifying therapy for MS. In contrast Case report 3 described no significant adverse consequences of prescribing dupilumab in three older MS patients already on a DMT treatment. What conclusions can we draw from these case reports?
Professor of Neurosciences Director of the Multiple Sclerosis Program 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. #Dupixent #multiplesclerosis Here is My Question:
I got Rituximab 1st dose of 1gm, yesterday (18 March' 24) for MS, and 2nd dose is scheduled after 14 days, so what can I take on my end to improve, like any supplement or multivitamin? Answer: You've already started on an excellent treatment for relapsing MS, so you're off to a great start. A full program for managing any chronic neurologic disease requires a long-term plan of self-management. This plan will vary depending on your particular circumstances but must include the following:
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
How do you determine if your MS symptoms are not from cervical spondylosis, cervical herniated disc, or kyphosis? I have a lot of cervical issues that have not been addressed and was only given MRI. I read that cervical issues could cause white matter changes in MRI. I also experience menstrual migraines. How do I know if my diagnosis is correct? Answer: It can be difficult to determine the cause of spinal cord symptoms, also called a myelopathy, particularly when the symptoms occur in middle aged or elderly individuals. Both degenerative disc disease and arthritis involving the cervical spine increase with age and may cause some impingement or frank compression of the spinal cord. Whether this compression causes any symptoms depends on how quickly it develops and whether there is compression of blood flow to the spinal cord. MRI scans can determine the degree of spinal cord compression and occasionally determine if there is limitation of blood flow or a contusion in the spinal cord. More commonly, we are able to see narrowing of the spinal cord canal space and flattening of the spinal cord at one or more levels but without any other alterations in the imaging characteristics of the spinal cord. In these cases, it takes a skilled neurologist using features of your history and examination to determine the likelihood that the compression observed on the MRI scan is responsible for your symptoms. This is most difficult in cases where there is also obvious involvement of the spinal cord by a disease such as multiple sclerosis. Some things to consider are the following:
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis Here is My Question:
At the time of my diagnosis (In 2021 at age 63) I agreed to treat my active RRMS (13 oligclonal bands) w/ 6 week EID Natalizumab. At 21 months, NRBCs started increasing. Why is erythroblastaemia a frequent finding of natalizumab treatment in RRMS patients, will it continue for the duration of Natalizumab treatment and are there any known complications of having elevated NRBCs? Answer: Thanks for your question. Elevated NRBCs (nucleated red blood cells) and WBCs (White blood cells) are common in people treated with Natalizumab (Tysabri). There are no known adverse effects from these elevations in common blood counts after nearly 20 years of treatment with this monoclonal antibody. The circulating cells are normal in function and morphology and seem to reflect increased mobilization of hematopoietic stem cells. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #RRMS Here is My Question:
I have MS and when I tested to see what medicines would be good for me, I tested for JCV with an index of 3.59, and my doctor told me that I should do Ocreveus infusions every 6 months. Would doing those infusions cause those numbers to go up any, because she was concerned at first because she said she has never seen numbers that high before for JCV. I'm also afraid I'm being misdiagnosed with MS as my bloodwork was negative and so was my spinal tap and she was confused on why, but continued to say it was MS because of the 20+ white matters on my brain. She said she's shocked I'm not in a wheelchair but I'm probably about the healthiest patient she had she said. She won't test my blood anymore because she tested 2 more times after that and it hasn't gone up. I've done the 2 treatments of Ocreveus 2 weeks apart at the 300 mg and now every 6 months at 600 mg and so I've only done 2 of the 600 mg ones. Should I be potentially worried about not getting bloodwork done for JCV anymore? She said the only way I'd do bloodwork again for it is if my MRI changes, but I have braces so there is a lot of artifact and could potentially cause something to be missed. Thank you in advance. Answer: Thanks for your message. It seems that without further information I am able to comment on two issues you raise First, it is not uncommon to see a JCV index > 3.0. This only means you should avoid prolonged treatment with Tysabri. It has no bearing on your risk of complications (i.e. PML) on Ocrevus Second, you do not seem convinced that you have MS. It is important for your decision making and your well-being to have confidence in this diagnosis. It is perfectly appropriate to ask for a second opinion from another MS expect to obtain this reassurance. Ocrevus is a great therapy but with rare serious long-term risks (like most treatments). You do not want to be on an inappropriate and unnecessary treatment. For your information, some people with MS do eventually have spinal fluid abnormalities with repeat testing and white matter lesions have very little cross-sectional correlation with disability. These facts should not be a surprise to an MS specialist. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS 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. Here is My Question:
Hi there. Love reading all of your posts. Truly helpful. I’ve been on and off Tysabri since 2015. I have been off during my 3 pregnancies. The first 2 postpartum experiences were great. The last postpartum period I experienced a lot of small new brain lesions. After resuming Tysabri for 6 months I had stable MRIs once again. Since my diagnosis in 2014 my entire Cspine has lesions (very scary) along with a few in my t spine. And more recently more brain lesions, initially I only had a few in the brain. I have been quite well despite all of this. Like I said-birthing my 3 children and nursing them well after 2 years old! I am extremely active and have minimal symptoms. Do you have patients with many spinal lesions who still do very well? My next question is- if I switch to Ocrevus do you think I will be worse off than I have been on Tysabri? I just got a positive JCV of .75. If I switch to Ocrevus I worry it will not be as effective. I’m very nervous. My neurologist thinks it will just fine for me. Thank you so much! Answer: There are really 3 issues involved with your decision making:
First, based on your report, your only disease activity (by MRI only) occurred after stopping Tysabri for pregnancy. This is expected and not a sign of breakthrough disease or treatment failure. Second, you do have an increased risk of PML and this risk is probably too high if you have received an immunosuppressant treatment in the past. If this is the case, you should probably stop Tysabri now. If you have received prior immunosuppressive therapies or chemotherapies, you can probably lower your risk of PML to an acceptable range by more frequent MRI monitoring (every 6-12 months with no contrast needed and just brain imaging) and increasing the interval between infusions from every 28 days to every 42 days. We know from a prior study that the efficacy of Tysabri is the same when administered every 42 days after a year of treatment given every 28 days. Third, Ocrevus has its own set of serious risks, mostly increased infections, particularly with prolonged treatment. We do not know if it is more effective than Tysabri because there has not been a head-to-head clinical trial and it is not possible to compare the trial results. Lastly, anecdotally patients do report feeling better on Tysabri and often tell us this feeling disappears after stopping Tysabri and starting Ocrelizumab. I would not weight this information too strongly because of the usual bias in these anecdotal reports. We less often know of people stitching from Ocrevus to Tysabri so we do not know if these individuals would report the same improvement in symptoms or well-being. I hope this helps with your decision making. Remember, there are specific reasons your MS specialist may want to switch you to Ocrevus that we are not aware of based on your message. For one thing, many specialists feel uncomfortable treating people with MS who are JCV index positive. This is understandable if there are other excellent therapies available without significant risks. Unfortunately, all therapies have risks; we want to ensure that the benefits of a therapy out weight the potential risks and you are aware of the risks for informed decisions. 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. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #Ocrevus #Tysabri #PML |
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.
Archives
June 2024
Categories
All
|