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Question:
Given the risks of PML with Rituximab, is HSCT safer for people with SPMS and positive JC virus (value being 3.84)? Answer: The risk of PML on rituximab is actually very low.The most recent publication on the risk of PML for FDA approved inflammatory conditions is 2.5 per 100,000 people treated. This is lower than the risk of PML with tecfidera and gilenya (which are also low risk by the way but certainly associated with PML) and much lower than the risk of PML with tysabri. HSCT (hematopoietic stem cell transplantation) has only been demonstrated to be effective in Relapsing Remitting MS (NOT SPMS), and is generally reserved for people with severe aggressive MS (SAMS), failing one or two prior DMTs. All of the HSCT studies in SPMS demonstrate a higher risk of complications, including death, in SPMS and less overall effectiveness compared to the treatment effects observed in RRMS. However, as of now there has NOT been a randomized controlled study of HSCT in SPMS, so further studies may demonstrate effectiveness in a subgroup of patients with SPMS. It is very hard to know at present if there is an increased risk of PML in MS patients after HSCT, since less than 3000 people with MS worldwide have been treated with HSCT and tracked in ongoing registries. PML has certainly been reported in people receiving HSCT for other conditions. There are additional severe risks with HSCT other than PML, and this treatment should only be used in experienced centers with an independent review board that ensures patients are selected carefully for treatment. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have RRMS. Most terrible symptom is the dreaded MS hug or I call it the squeeze of death. I just read that Dr Oz once said it was the leading cause of death in MS. I know it’s stupid and I know the answer but just want to make sure. Is this inaccurate? Also, have you heard of success using Botox injections in the intercostal muscles for the MS hug? If so, is that a treatment that can be long lasting and frequently done or is it a one time thing and only short term response. Answer: That is completely inaccurate. The MS hug is a sensory illusion that comes from prior demyelinating lesions in the posterior aspect to the spinal cord (typically the thoracic cord). It does not lead to respiratory distress/arrest but it can feel awful. I have not seen botox used for this indication; however, discussing potential therapies that can work on the spinal cord may be helpful: ie, specifically baclofen and trileptal could be considered. Once symptoms improve over time, you could come off these symptomatic medicines. Hope this helps. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is it safe to use Ginseng to boost energy and fight MS fatigue? If yes, which variety? Answer: Not much is really known about ginseng in this regard; however, there was a published study from Iran that looked at this issue. They performed a double-blind study among 60 women with MS who were either randomized to taking ginseng 250mg twice a day or a placebo pill twice a day. They measures a couple patient report surveys (one on quality of life and the other on fatigue). After 3 months of taking the study medicine, the women taking the ginseng reported less fatigue (just barely statistically significant) and much improved quality of life. They didn't report any adverse events over the short 3 month study period (although it is not clear if there are long-term safety concerns. Among the 60 patients 52 actually completed the study. If interested, the study/paper can be found: Int J Neurosci. 2013 Jul;123(7):480-6. doi: 10.3109/00207454.2013.764499. Epub 2013 Feb 11. Ginseng in the treatment of fatigue in multiple sclerosis: a randomized, placebo-controlled, double-blind pilot study. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Question:
I have an appointment with my MS specialist but it’s not until sept 4th and the MS hug has been intolerable. It’s been happening every day. Some days the hug feels like I’m going to die for about 5 min to 5 hours and others it is a pain that makes me feel tight and short of breath all day. This times it’s been several days straight. Is there anything to treat this that has fast control? Should I go to the ER? I’m just not sure what to do from here. This is awful :( Answer: Please ask your primary care doctor to prescribe a treatment for this symptom while you wait for your neurological visit in September. I would suggest trying gabapentin first (up to max dose of 900 mg three times a day) and if this is not tolerated or helpful try oxcarbazepine next (up to a maximum dose of 600 mg twice a day) Your Primary care doctor can look up how to start and titrate up the dose. Your pharmacist can explain the potential side effects, but low starting doses of each medication is tolerated by most people. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
What is the common thinking about the use of Ocrevus in older patients? I’m almost 61 and due to get my first infusion soon. My neurologist, whose idea it was for me to go on Ocrevus in the first place, said he’s not planning to keep me on it for more than a couple of years due to my age. I don’t see the point of even going on Ocrevus then if I’m not going to be allowed to stay on it even if it’s helping me and I can tolerate it. Is long term use of Ocrevus considered unsafe in older people? Or ineffective? What benefit would I get from just a few infusions? I feel too discouraged now to even start it. Should add that I’m secondary progressive with relapses. Answer: If you are indeed in the progressive phase with relapses, then you are a good candidate for this therapy as it is one that has shown the ability to slow down the rate of progressive disability. The argument to treat is rooted in the fact that once the door on the inflammatory phase is closed (ie, no evidence of relapses or changes on the MRI), there is no therapy that has proven able to modify the rate of accumulating disability. The thought that an individual does not require indefinite treatment is based on the same rationale: the inflammatory phase eventually ends for everyone, and when that time comes, there is no real justification for continued exposure to these therapies (as the are currently constituted at the time of this response). The challenge is concluding when that door closes for the individual patient. That’s hard to predict. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am an adult male who has been living with MS for 40 plus years now. I was diagnosed in 1978 with RRMS and have now been told by my Neurologist that I have SPMS. My MRI scans have not changed in 12 years now. In your opinion do you think it is still necessary to continue having an MRI yearly as I am claustrophobic? Thank you. Answer: It is highly unlikely that new inflammatory changes on the MRI will be seen at this stage if the disease. Typically, monitoring clinically with a neurological exam will suffice and tends to be more informative than an MRI in the secondary progressive phase. A. Scott Nielsen MD, MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I’m a 60 yr. old female diagnosed with MS in 2018 after approximately 14 years of symptoms. Doctor thinks I may be secondary progressive or moving into it. Over 20 brain lesions, 3 on spine. Aubagio helped my symptoms but raised my blood pressure. Now doctor suggests Ocrevus but I’m afraid of the risks at my age. I should add I also have Cardiomyopathy and possible afib. Had a relapse a few months ago which doctor isn’t convinced was a relapse (but I know it was). Symptoms: a severe headache 24/7 for 3 weeks; increased balance issues and foot drop, blurry, double vision and a new symptom: sharp stabbing pains in joints and upper arm that came and went. Had what I believe was a relapse last year too. However, an MRI done without contrast recently (to check for a possible TIA I had) showed nothing new. It took a few months for me to get back to my baseline but it does seem at times like I may have slightly progressed since the relapse happened and since I was taken off Aubagio. My question is: Does it sound like I had a relapse to you, and do you think it would be worth the risk for me to try Ocrevus? Doctor is offering nothing else. I’m worried about not being on a DMT, but worried about the risks of Ocrevus too. Don’t know what to do! Answer: The definition of a confirmed relapse of MS includes the following elements: 1. New or worsening neurologic function for >24 hours 2. In the absence of fever or infection 3. Confirmed by an examining neurologist Much of what you mentioned appear to be symptoms you have had before. Fluctuating symptoms of MS are very common in comparison to actual new inflammatory events (or confirmed relapses). This is due to prior damage and scarring in those pathways which have an opportunity to influence nerve signaling at any point of time (regardless of the presence or absence of discrete inflammatory events). Since the MRIs didn't show anything new, it does raise the question if what you've been experiencing and interpreting as a new relapse may in actuality have been fluctuating symptoms from prior scarring. However, I cannot say and would have to defer to your treating (and examining) neurologist. In regards to disease modifying therapy and Ocrevus (which is a b-cell biologic), if you are in fact transitioning into a secondary progressive phase, this medicine does have significant advantages. B-cell biologics have show the ability to mitigate the rate of disability progression while other MS therapies have not. Also, these therapies are targeted (ie, they only influence the b-cell rather than taking a shot-gun approach to the entire immune system). In some respects, this lowers risk, particularly infection risk which has been a problem with other highly effective MS therapies that are not targeted. My experience with b-cell biologics has been favorable in the setting of disease control, tolerance of the medicine among patients, and infectious complications. However, this is a conversation that should be had with your treating neurologist who knows your case of MS and should be able to address any concerns you have about the proposed medicine. If you don't get the answers you are seeking, you may want to get another opinion from a neuro-immunologist that can see you in person, review your history in detail, and make recommendations for you to consider. Hope that helps. A. Scott Nielsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am 25 pounds overweight. I have lost quite a bit, but these last 25 pounds stuck. With the summer heat, I'm tired and do not want to walk outside in the heat of the summer. I am taking two naps a day, and I have gained 10 pounds. My friend suggested Phentermine. I have taken it before I was diagnosed with MS with good results. I just need something to get me up and away from the fridge. I know it isn't a long term solution, but it would help develop a good habit. My MS is very stable on Rituxan. Healthy eating and exercise are key components to living well with MS. Would phentermine be something that could help? Answer: You have to ask your doctor if phentermine is safe for you, since I know nothing about your individual case. Generally I would not recommend using phentermine. It is better to lock the kitchen after 7 pm and consider adding the 5:2 fasting diet to your other dieting approach; this means 2 days of the week you need to fast for at least 15 hours. In practice most people eat nothing between dinner and lunch the following day to satisfy their day of fasting. I would also recommend, if possible, a buddy system or social network approach. Find people to support you when feel the urge to break your diet. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have some symptoms that might be related to MS but I’m not sure. For a while I’ve been experiencing dizziness and muscle fatigue/weakness after exercise and also generalized fatigue. My MD ordered a head CT which showed a lesion in my parietal love. I also have A fib and a pacemaker. My MD said the lesion was most likely a small stroke and put me on blood thinners. I asked if the lesion could be MS but she said they can’t determine it unless I have an MRI. It would be difficult for me to have an MRI because of my pacemaker though so she left it at that. She also said the small stroke would not be causing the dizziness and muscle weakness. Is it possible that the brain lesion could be MS? It would be impossible to answer your question without seeing your MRI You should know, however, that dizziness and fatigue associated with exercise could be related to either atrial fibrillation or multiple sclerosis. If these symptoms are caused by MS, it is usually due to problems with the autonomic nervous system. Sometimes it helps to get a Tilt table test and an exercise stress test to determine if there are problems limiting exercise tolerance and safety. Ask your doctor Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director 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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