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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 Here is My Question:
My husband has been on Gilenya for about 5 years. He will now go on Kesimpta. We will be trying for a baby soon. Does Kesimpta affect male sperm/fertility? I understand there is not much research but I need some sort of reassurance. Thank you. Answer: We have no data on the effects of Kesimpta on male fertility. We do have data showing that another drug (Ocrelizumab) with the same mechanism of action--targeting and depletion of anti-CD20 positive B cells--does not affect gonadal hormone levels or sperm function after 12 months of therapy. It is more likely that medications used to treat MS related symptoms (anti-depressants and anti-spasticity medications) may negatively affect both sexual function and male fertility and men should continue the risks and benefits of continuing these drug therapies during pregnancy. Among the disease modifying therapies Ocrelizumab (Ocrevus), Rituximab, Ofatumumab (Kesimpta), Natalizumab (Tysabri), Dimethyfumarate, S1P modulators (Fingolimod, zeposia and Mayzent) , interferons and glatiramer acetate have no specific warnings for men trying to conceive. There are very specific warnings and precautions for men on Teriflunomide (aubagio), Cladribine (Mavenclad), Mitoxantrone (lemtrada), azathioprine, methotrexate and cyclophosphamide trying to conceive. These drugs must be stopped for specific periods of time or sometimes avoided until the man donates to a sperm bank if he wishes to conceive in the future. I hope this helps. In general, most neurologists and patients do not consider these issues in their male patients except as mentioned in the last paragraph, primarily because there is so little data available to raise any concerns. You can be thankful that there is at least some data available to guide you on the anti-CD20 class of medications and this data seems reassuring. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS Here is My Question:
What are your thoughts about walking on a treadmill to help with gait? Answer: Treadmills are commonly used to improve gait in people with MS and other conditions that affect ambulation. This can be done with or without a harness supporting your body depending on the severity of your walking difficulty. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #treadmillsandMS #MS #multiplesclerosis If i forgot to take my Tecfidera pills last night, can I take my normal dose the next morning?3/28/2024
Here is My Question:
I accidentally took 2 of my Tecfidera pills. Can I take my normal Tecfidera pill the next morning or should I skip and wait till night one? Answer: If you accidentally take 2 Tecfidera tablets with your morning dose, it is okay to take 1 tablet in the evening and get back on the correct schedule the next day (1 capsule twice a day) Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #Tecfidera #MS #multiplesclerosis Here is My Question:
I've been on Gilenya for 6 years now and it has increased my liver ALT and AST enzymes. My neurologist suggests switching to Kesimpta, which is not available in adequate quantities right now, so he suggested switching to Tecfidera. However, based on my research over the internet, I've found that Tecfidera needs 24 weeks to start working and 2 years to full effect, while stopping Gilenya can cause a severe relapse in 12 weeks in some cases. Will taking Tecfidera leave me without protection during this period of time till it starts to work? Thank you. Answer: Whenever a person with relapsing MS switches from either an S1P modulator (e.g., mostly Gilenya but theoretically Zeposia and ponesimod) or Natalizumab (Tysabri) to another DMT, neurologists must be mindful of the potential for a rebound in disease activity. This tends to occur faster (8 weeks or later) with S1P modulators than with natalizumab (12 weeks or later) and overall occurs in about one third of MS patients. The Restore study suggested that IV steroids, glatiramer acetate and interferons begun after stopping Natalizumab were not effective at preventing rebound activity. However, a single infusion of anti-CD20 therapy (e.g., Rituximab or Ocrevus) after stopping either S1P modulators or Natalizumab is very effective at preventing rebound disease activity. I am not aware of data showing Tecfidera to be effective at preventing rebound in this circumstance. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #Gilenya #Tecfidera Here is My Question:
Greetings. I have a question for you. In 2018, I tested positive for JCV and the index showed 0.38. Since then, the status has been negative. I started with Kesimpta therapy. I took Ocrevus for three years, now Kesimpta. My question is whether it is possible to develop PML. And how is it possible that the JCV status positive index 0.38 in 2018 was negative all this year. Thank you in advance for your answer. Answer: PML is uncommon in people with MS on anti-CD20 therapy (e.g., rituximab, ocrelizumab, ublituximab and ofatumumab). In fact, it is very uncommon on all MS therapies including natalizumab. There is no current way to stratify or assess the risk of PML in people on anti-CD20 therapy. The only exception is people with MS who recently stopped natalizumab and started an anti-CD20 therapy. They must first be assessed for evidence of asymptomatic PML before starting anti-CD20 therapy to prevent a carry-over case of PML. There is also reason to believe that significantly immunosuppressed individuals on anti-CD20 therapy may have an increased risk of PML. We use the JCV index to stratify risk of PML in people on Natalizumab (Tysabri) only; There is no data I am aware of that would allow us to use the JCV index to assess the risk of PML with other therapies. People with low titer JCV index not uncommonly bounce back and forth between a negative result and a very low titer response with repeated testing. Most of the risk of PML in people on natalizumab occurs in people with high titers. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #PML #multiplesclerosis #JCV Here is My Question:
Hello! I am not diagnosed with MS but I take Tecfidera twice a day as a prevention (I had lesions in my brain that the Tecfidera medicine made disappear because they were caught early) and I never had an attack. I'm on the preventive side (my dad and grandma both have MS). I want to do fillers for both my face and my back ( I have a small whole I want to fill where I used to have a mole). Is it safe to do fillers while taking Tecfidera? thank you Answer: I know of no contraindication between any of the fumarates, including Tecfidera, and the use of fillers. Tecfidera is indicated for relapsing forms of MS including clinically isolated syndrome. I assume you are taking it because of a prior clinically isolated syndrome. Please check with your physician as this is strictly for education purposes. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #tecfidera #fillers #multiplesclerosis 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. |
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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