Personal Experience with the Good News on Multiple Sclerosis Treatment
The head of our company is a senior physician. He’s been around a long time and has seen a lot. An academic colleague of his was diagnosed with multiple sclerosis in 1996, twenty-six years ago. Despite getting the best medication and medical care possible (he was a professor in a school of medicine) he passed away at age 64 in 2008, 12 years later, after years in a wheelchair with increasing debilitation. Later, in 2006, the wife of a good friend was diagnosed with multiple sclerosis. She got the new medications that were available and newer ones that became available. (Her husband was a physician at a major medical center.) She’s still relatively well and doing fine sixteen years later, in 2022, at age 69. No wheelchair, no debilitation. Many of the most effective medications for multiple sclerosis have been FDA approved in the past 15 years.
Welcome to the Neuroscience Research and Development Consultancy website. Have a question or a comment? Send it to us at: Comment@NeuroSciRandD.com
Multiple Sclerosis (MS) is an autoimmune medical condition. (Examples of other autoimmune conditions are rheumatoid arthritis, type 1 diabetes, and inflammatory bowel disease.) In multiple sclerosis a person’s immune system, which is supposed to protect a person by attacking newly-formed cancer cells and foreign invader organisms, attacks healthy nerve cells. Nerve cells are the electrical connections that signal back and forth between and among everything in our bodies. Since the nerves go everywhere, multiple sclerosis symptoms can be almost anything, depending on which nerves are damaged. if you haven’t already read it, see our free main page on MS. The goal of treatment for multiple sclerosis is to stop it in its tracks, to halt any worsening of symptoms. When MS attacks occur, treatment is all about getting the attack to stop.
The Newer Medications Are More Effective for Treating Multiple Sclerosis
As illustrated by the story above, huge progress in treating multiple sclerosis has been made in the past twenty years. The progress has come from a better understanding of what goes wrong in MS and how to design better medications to protect the nervous system. These newer medications slow the worsening of MS. At times they slow MS progression to the point of almost stopping it. Medical science’s understanding of MS, the immune system’s attack, the nerve damage caused, and ways to treat it continue to improve. And the more we understand about what goes wrong the better we can design medications to stop the nerve damage. But while all the new medications are a great improvement over the past, none of them will cure MS. And we want a cure. The research world is working to find one.
One of our Readers in Manchester UK commented:
If you’re in the UK and you have MS getting care is a real mess. New medications don’t help anyone if you can’t get them to take them. Our National Health Service is really failing here.
Yes, it’s true, the United Kingdom and its National Health System is doing too little for people with multiple sclerosis. They are not getting appropriate care. Recently (December 2022) Phillip Anderson, the Head of Policy at the MS Society in the UK, published a statement about the crisis in care for multiple sclerosis in the UK.
He gives the example of the disease-modifying therapy siponimod (Mayzent®), the first and only oral disease-modifying therapy available for the secondary progressive form of MS. Only 5% of the people eligible to get it have it, which means that many are going without treatment. More than half of adults with neurological conditions in the UK (55%) are hitting delays just to get a routine appointment with a neurologist. Major advocacy organizations for people with neurological conditions have a petition drive to get a petition to all of the UK Health Ministers, urging them to set up a Neuro Taskforce to establish plans to improve treatment, care, and support for people affected by neurological conditions.
The Choice of Neurologist and the Treatment Team Is Important
Not every physician just down the street is an expert at treating MS. Medicine and medical care are a blend of science and art, and the need for a good blend of both is especially true when treating MS. The experience, skill, and training of the neurologist and the treatment team are important. Super important. The medications used, the close following of MS to see if it’s getting worse, getting repeated magnetic resonance imaging (MRI) scans as time goes by, and everything in treating MS is specific for each person. The MRI scans of your brain and spine examine for areas of damage and whether they’ve lessened or gotten worse. It’s not “one-size-fits-all”. MS is not a medical condition for which you should get care from any garden-variety general practice physician, bright and friendly though they might be.
Physical Therapy Is Important – Treating Multiple Sclerosis
While the medications for MS are the miracles, physical therapy remains really important in treatment. The nerve damage of MS can cause some muscles and joints to be used too little. Sets of stretching exercises and muscle strengthening exercises work to keep all the muscles and everything flexible and strong. Then when the next remission comes, life can be much more normal. If muscles get weak and tendons and ligaments get stiff during a relapse, life remains more difficult during the next remission.
Start MS Treatment While You’re Still Well, Start Right Away, and Stay With It
For the best result in treating MS it’s important to start the medication(s) and a physical exercise program as soon as you have the MS diagnosis. Then, once you start the treatment regimen, stay with it. Your medical treatment team has specific guidelines they follow on which medications to start and when to start them, when to switch from one medication to another, and when to stop a medication. So it’s important for you to see your neurologist often and carefully stay on track with the treatment plan if you want stay healthy. It used to be that people with MS would die younger than people in general. With these new medications and techniques this is no longer always true. But to live a full life people with MS need to take better care of their health than the average person does.
There Are Different Kinds of Medications for Treating MS
Some of the medications for multiple sclerosis are oral meds, others are injections, and others are infusion medications, dripped slowly directly into a vein over a period of hours.
And, There Are Different Medications for Different Types of MS
For Relapsing-Remitting MS
As we say on our main MS page, the most common type of MS is relapsing-remitting MS, or RRMS. There are several medications for RRMS that are called “disease-modifying”, meaning that they don’t just treat symptoms, they change the illness itself. Some are medications that can be taken by mouth and others must be injected under the skin or into muscle or infused into a vein. If the MS is not highly active a neurologist might start with one of the interferons or glatiramer. For highly active MS other medications might be chosen. Which medications and when to use them has to be part of an individual treatment plan for a specific person. In addition, one usually takes a steroid for acute symptom worsening and other medications for fatigue, or depression, or pain. Coordinating medications is why you need an expert neurologist to treat your MS.
More on Medications For Relapsing-Remitting MS
There are specialized medications that work well for RRMS. Some of them are given by injection or infusion, and some are taken by mouth. They have specific side effects that make them valuable only after an interferon or glatiramer have been tried, so these are definitely medications to be given by and monitored by a neurologist experienced in treating multiple sclerosis. Here’s a list of the ones that are injected or infused:
- natalizumab (Tysabri®) – given by intravenous infusion
- alemtuzumab (Lemtrada®) – given by intravenous infusion
- ocrelizumab (Ocrevus®) – given by intravenous infusion
- ofatumumab (Kesimpta®) – injected under the skin
- rituximab (Rituxan®, Truxima®, Riabni®, Ruxience®) – given by intravenous infusion
- mitoxantrone – given my injection
Oral Medications for Relapsing-Remitting MS
These are the medications that can be taken by mouth for RRMS. As with injectable medications, the choices must be individualized for a specific person. Here’s a list:
- fingolimod (Gilenya®) – oral
- siponimod (Mayzent®) – oral
- ozanimod (Zeposia®) – oral
- cladribine (Mavenclad®) – oral
- dimethyl fumarate (Tecfidera®) – oral
- diroximel (Vumerity®) – oral
- teriflunomide (Aubagio®) – oral
For Primary-Progressive Multiple Sclerosis
The second type of MS that we list on our main MS page is Primary-Progressive MS or PPMS. This PPMS type occurs in about 10% of new MS diagnoses. For this type, at least in terms of what is FDA-approved, there is one disease-modifying medication, ocrelizumab (Ocrevus®). It’s given by intravenous infusion. It’s an effective medication that is given every six months, continues to work for years, and has a good safety record. It’s a convenience of ocrelizumab that it needs to be given just twice a year.
Some Multiple Sclerosis Medications Can Be Expensive
The newer medications for treating MS can be expensive. Most offices and clinics that treat MS know about special programs to help with cost, how to apply to pay less, and can help you get the right medications for less. One can also appeal directly to the pharmaceutical company that makes a medication. The companies often help when they can.
There Are Times When a Rescue Medication is Necessary
Let’s say that you and your neurologist have found a set of medications that’s working and your MS is not worsening at all or maybe worsening very slowly. Then your symptoms suddenly change and get worse quickly. Most of the time the symptoms will lessen in a brief time without a rescue medication. But not always. This situation is another important time when you need that expert neurologist with experience. There are times when the MS does get much worse, too much so, and you need a rescue medication. For example, if your eyesight deteriorates, or you become weak or off balance. Such an situation might be a time for a burst of a steroid to rescue you.
Steroid Medications for Rescue from Multiple Sclerosis Attacks
If an MS attack occurs and your neurologist says you need a steroid rescue medication, it means that the nerve cells have become inflamed. Steroid medications are great for stopping inflammation. The one usually used that you can take by mouth is prednisone. In situations where there is a more urgent need to stop the nerve cell inflammation and damage a medication might be used that is infused directly into a vein. Intravenous methylprednisolone is one that’s often used. While these steroid medications are what’s needed they might have side effects, like disturbing sleep, or causing headaches, or making your muscles feel weak. Fluid retention or increased blood pressure are other possible side effects. They might cause upsetting mood swings or could cause a rise in blood sugar.
Plasma Exchange for Rescue from Multiple Sclerosis Attacks
There’s another approach for treating MS symptom attacks. Sometimes a new attack starts and becomes severe and steroids don’t seem to help. There is a treatment called “plasma exchange” or “plasmapheresis”. Some people think of it as a blood cleansing process. Blood is taken out and a machine separates the liquid part of your blood, the plasma, from the blood cells. The blood cells are then mixed with a solution with a protein in it called albumin. These cells and albumin are then put back into you. This takes the antibodies out of the blood that attack the nerve cells as part of a bad MS attack. Plasmapheresis takes about two to four hours. Depending on the severity of the attack and the benefit from the plasma exchange, a person might have about three to seven exchanges to stop a severe attack.
When Things Wrong, There Are Solutions
MS is a challenge. No one will deny this. Problem surprises might show up at any time. Fear not, your expert and experienced clinical team will have solutions. Here’s a short list. We don’t mean to scare you, but to let you know that if one of these difficulties appears might be because of the MS.
- Bowel difficulties
- Bladder problems
- Walking problems
- Muscle spasms
- Sexual problems
- Feeling upset and emotional in a way that’s just not you
- Dizziness and/or vertigo
National Multiple Sclerosis Society Website
The National Multiple Sclerosis Society (based in the United States) website is an important support site. The staff of the National Multiple Sclerosis Society are dedicated individuals. The site tries to provide complete facts about what’s available.
We will do our best to get fresh information to you, and to keep you updated as companies launch new medications or we find news of possible future medications. The important thing here is our ability to gather expert opinions about which new medications hold great promise, which will probably be somewhat helpful, and which are likely to be no help at all.
The Medical Letter on Drugs and Therapeutics, Vol. 63 Issue 1620, March 22, 2021, pp. 42 – 48.
Check the ClinicalTrials.gov website for recruiting and not-yet-recruiting studies of MS.
National Multiple Sclerosis Society on Treating MS
e-medicine’s Medscape on Multiple Sclerosis Treatment & Management
The Mayo Clinic on Multiple Sclerosis Diagnosis and Treatment