Treatment FAQ

why do some patients not start treatment for multiple sclerosis as soon as possible?

by Mr. Ceasar Moore Published 2 years ago Updated 2 years ago
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A possible explanation for why some patients diagnosed later in life doesn’t start DMT is that these patients might have a more benign disease course and subsequently are reluctant towards DMT. In case of long term benign disease course, some neurologists advice patients to wait and see whether the disease will remain stable.

Full Answer

Is early treatment for multiple sclerosis (MS) worth it?

"Early treatment means you can either delay or even prevent relapses. Also, the sooner it's received, the less likely an MS patient will develop serious disabilities later in life," he says. "You want to put the fire out before it spreads."

Should people with MS take medications to prevent relapse?

Multiple sclerosis drugs have been proven to reduce relapses. But some with MS still say no to treatment. Most doctors recommend starting an MS medication at the time of diagnosis, but some people with MS choose not to. Getty Images

Can disease-modifying therapies help multiple sclerosis?

Keywords: Multiple sclerosis, Disease-modifying therapy, Treatment start, Treatment switch, Treatment stop, Interferon beta, Glatiramer acetate, Azathioprine, Natalizumab, Fingolimod Core tip:Disease-modifying therapies for multiple sclerosis (MS) modulate or suppress with different mechanisms the autoimmune process that underlies the disease.

Why do so many doctors fail patients with MS?

It's unfortunate that too many doctors fail to educate their patients about what they should expect with their disease. There are a lot of treatment choices for dealing with MS. In the case of medications, most pharmaceutical companies have programs that will pay for most, of not all, of these meds for people who can't afford them.

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When should you start treatment for MS?

Most people with MS will need to start treatment right away, but that might not be the case for everyone, Keegan says. Your doctor may watch you closely for a while if you have: A very mild episode that goes away completely. A normal neurologic exam.

What happens if you don't get treatment for MS?

Treatments for MS can also help reduce the likelihood of a relapse, but they don't help make relapses less severe. If you stop taking your MS medication, you're more likely to relapse. And if left untreated, MS can result in more nerve damage and an increase in symptoms.

Is starting treatment for MS important?

Why is early treatment important in MS? We know early treatment improves long-term health and wellbeing by slowing down the build up of irreversible damage and reducing the number of relapses people experience. Starting MS treatment early is best but if you start later it can also have some benefits.

Can you live with multiple sclerosis without medication?

A small number of people with MS have only mild disease and do well without treatment. But many get worse over time. Medicines can reduce the severity of attacks of relapsing-remitting MS and how often you have them. They may also reduce or delay disability.

How long can you live with untreated MS?

In a large 2015 study published in the journal Neurology, scientists compared 5,797 people who had MS with 28,807 people who didn't but who did have things in common like age and location. The study found that people with MS lived to be 75.9 years old, on average, compared to 83.4 years old for those without.

Can MS go into remission without medication?

Mild symptoms such as slight numbness, a pins-and-needles feeling, or periods of fatigue may not need treatment. If your relapse doesn't drastically affect your daily life, the flare-up will usually get better on its own.

How fast does MS progress without medication?

Without treatment, approximately half of individuals with RRMS convert to SPMS within 10 years. However, with the introduction of long-term disease-modifying therapies (DMTs), fewer individuals advance to this latter form of the disease.

Is it better to get MS later in life?

But when you develop the condition later in life, it may progress faster. Older adults with MS have a greater risk of the primary progressive form of the condition as well. This means that your body will likely gradually decline over time even though you may not have a lot of MS flare-ups.

Why is it important to diagnose MS early?

Early diagnosis is important because there is growing evidence that early intervention is useful. It is known through the work of Trapp et al that axonal loss can be present, even in asymptomatic patients, early in the disease process.

Can you stop MS from progression?

By finding treatments that prevent nerve loss, we could slow or stop the progression of MS. We're excited because clinical trials of potential treatments are already underway. This includes the MS-STAT2 trial which is testing if simvastatin can slow progression in secondary progressive MS.

Can MS be mild forever?

After the first round of symptoms, multiple sclerosis can stay mild without causing major problems for decades, a 30-year British study indicates.

Why is Benadryl great for multiple sclerosis?

In light of previous laboratory studies of the antihistamine compound at UCSF, the researchers said, the drug most likely exerted its effect by repairing damage MS had inflicted on myelin, an insulating membrane that speeds transmission of electrical signals in the nervous system.

How to treat MS?

Many MS treatments are given intravenously, subcutaneously, or intramuscularly—in other words, through a needle inserted into a vein, fat tissue, or muscle. It's the most efficient way to get the medication into the body where it can start doing good. Whether needles really don't bother you or you're terrified of them, having a sharp object inserted into your skin probably isn't your idea of a good time. 1  (By the way, there's a name for a severe fear of needles: trypanophobia .) Ask your doctor or someone else who has had similar treatments for tips on dealing with needle negativity. It may be that simply having a friend along to distract you or learning a basic self-hypnosis technique will be enough to get you past your fear. It's also important to note that there are currently six oral therapeutic options to treat MS that can be considered.

What is the best treatment for multiple sclerosis?

Relapse Management . The most effective treatments for multiple sclerosis (MS), particularly the relapsing-remitting types, are disease-modifying medications. That's because these drugs can actually slow down the progression of MS and reduce the number of relapses a person experiences.

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Can MS medication make you feel worse?

Who wants to feel worse while being treated for already being ill? Unfortunately, side effects are almost inevitable, especially with drugs powerful enough to treat MS. Most of them are minor and easy to treat, however. For example, you might have redness or tenderness around the injection site if you're on treatment that's given subcutaneously. A cool compress can combat these symptoms. When you first start taking certain MS medications, you may feel a bit like you're coming down with the flu. 1 This is common and yucky, but short-lived. Once your body gets used to the medication, this side effect will go away. And remember, if any reaction you have to medication is so bothersome you can't tolerate it, your healthcare provider should be able to switch you to another medication, so don't hesitate to speak up. While this is understandable, it's important to know that side effects can usually be managed or reduced with specific strategies and careful monitoring.

Do needles bother you?

Whether needles really don't bother you or you're terrified of them, having a sharp object inserted into your skin probably isn't your idea of a good time. 1  (By the way, there's a name for a severe fear of needles: trypanophobia .)

Is MS treatment safe?

New treatments for MS are being developed and studies are underway all the time, but it's important to understand that it takes a long time for any medication to become available to patients. It has to be proven safe, approved by the U.S. Food and Drug Administration, made in enough quantities to be distributed, and included for coverage by insurance. So while it's a good idea to stay on top of MS research, it could be to your disadvantage to wait around for a new drug. Remember, the sooner you begin treatment for MS, the more effective it will be. 2 

Is MS an expensive illness?

There's no doubt about it: MS is an expensive illness to have, and the economic burden can sometimes be just as draining as the physical and mental toll. 1  If money for your MS meds is an issue, know that there are resources to help you pay for treatment.

Why is it important to treat multiple sclerosis early?

The nature of multiple sclerosis demonstrates why it is important to seek a diagnosis and treatment early. MS affects the myelin that coats the nerves, leaving the nerves vulnerable to damage. As the disease progresses, the communication between the brain and the rest of the body begins to break down.

Can MS be left untreated?

If left untreated, MS can cause significant disability. Once those abilities are gone, it’s nearly impossible to get them back, even with treatment. Since most people with MS are diagnosed between the ages of 20 and 50, that leaves a lot of time to slow the disease and save bodily functions.

How to slow the progression of MS?

Starting treatment early generally provides the best chance at slowing the progression of MS. It reduces the inflammation and damage to the nerve cells that cause your disease to worsen. Early treatment with DMTs and other therapies for symptom management may also reduce pain and help you better manage your condition.

How many MS attacks occur below awareness?

A 2009 study in the Journal of Managed Care Medicine estimated that for every MS attack that causes symptoms, 10 attacks happen below a person’s level of awareness.

What happens to the brain when myelin degrades?

As the myelin degrades, the nerves are vulnerable to damage . Scarring, or lesions, can appear on the brain, spinal cord, and optic nerve. Over time, communication between the brain and the body breaks down. About 85 percent of people with MS have relapsing-remitting MS (RRMS).

Is there a DMT for progressive MS?

Treatment options are limited for those with advanced or progressive MS. There are no DMTs approved for SPMS. Only one DMT, ocrelizumab (Ocrevus), is approved for primary progressive MS (PPMS). Moreover, there’s no medication that can repair the damage already caused by MS.

When do you get a diagnosis of a syphilis?

Since diagnosis typically occurs between the ages of 20 and 50, many people have a lot of time left. It’s important to consider if making the most of that time means treating the disease and stopping its activity as early as possible.

Is MS a lifelong condition?

Faced with few symptoms and the prospect of side effects from medication, many people choose to delay medical intervention. However, MS is a lifelong condition.

Can DMTs be used for SPMS?

Several years after diagnosis, RRMS can turn into secondary progressive MS (SPMS), which doesn’t have periods of remission. DMTs aren’t effective against SPMS. For that reason, your doctor may recommend starting DMT treatment early, when these medications can have a notable effect.

What is MS in the nervous system?

Multiple sclerosis (MS) is a chronic inflammatory condition of the central nervous system determined by a presumed autoimmune process mainly directed against myelin components but also involving axons and neurons.

Is the potential advantage of a given treatment condensed in a relatively limited window of opportunity for each patient?

It is therefore likely that the potential advantage of a given treatment is condensed in a relatively limited window of opportunity for each patient, depending on individual characteristics and disease stage, most frequently but not necessarily in the early phase of the disease.

Do MS patients need a disease modifying treatment?

In addition, a sizable proportion of patients with MS may have a very mild clinical course not requiring a disease-modifying therapy. Finally, individual response to existing therapies for MS varies significantly across subjects and the risk of serious adverse events remains an issue, particularly for the newest agents.

Why do people not take MS drugs?

In some cases, they and their doctors are comfortable waiting to see how they do and how the disease affects them. Others say no to MS medications because of the cost or because they're afraid of the side effects , LaRocca says.

What Causes Disability Progression in MS?

“One is inflammatory activity in the central nervous system, and the other is neurodegeneration within the brain and spinal cord,” he says.

How old was Rick Sommers when he was diagnosed with MS?

New Yorker Rick Sommers, 56, was diagnosed with multiple sclerosis (MS) when he was 34, though he thinks he probably had the condition for 10 years before that. At the time, doctors could offer only one drug for treating MS.

How long did it take for Sommers to change his mind?

After about two years , however, Sommers changed his mind and started on MS medication.

How many drugs are approved for MS?

The U.S. Food and Drug Administration has approved 14 disease-modifying drugs for treating MS; most are injections or infusions, but three are oral medications.

Can MS patients take medication?

Many people with MS say no to medication, and "the reasons vary considerably from person to person,” says Nicholas LaRocca, PhD, vice president of health care delivery and policy research at the National Multiple Sclerosis Society (NMSS).

Can MS patients be treated with drugs?

Multiple sclerosis drugs have been proven to reduce relapses. But some with MS still say no to treatment.

How long does it take for MS patients to stop using DMTs?

Forty percent of people being treated for MS stop using their disease-modifying therapies (DMTs) less than three years after they start them, according to a study published in the American Journal of Managed Care. I’ve been using a DMT since Avonex first became available in 1996.

When was Ed Tobias diagnosed with MS?

Ed Tobias Diagnosed with MS at age 32 in 1980 , Ed has written the "MS Wire" column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences.

Why do people reject DMTs?

The report says that 14 percent of the people who reject DMTs do so because they can’t afford them. But for a much larger group, the hang-up wasn’t considered to be rational. Over 42 percent of the 78 people included in the study declined a DMT because they couldn’t admit to themselves they have a serious disease.

Why was Tysabri taken off the market?

The reason that Tysabri was taken off the market for a period of time was due to the catastrophic incidence of progressive multifocal leukoencephalopathy (PML). They were able to identify the presence of the JC virus in those that succumbed to PML after being treated with Tysabri.

Is Copaxone effective for MS?

Itonly has 30 per cent efficacy — that means it only works for 30 percent of people." That is incorrect. First of all, it slows relapses by 30% on average over everyone. But it doesn't work for all patients. Some patients respond better to other drugs. Also Copaxone seems to increase in effectiveness the longer you take it. But your conflating the effectiveness with the percentage of people it works for is incorrect. Secondly, "Tysabri is so dangerous that is was banned after 8 people died and only returned because of the pharma lobby." Tysabri is dangerous, however it is also effective. For people with very aggressive MS it can be a life-saver. With ALL MS drugs one needs to balance the risks with their individual case. Someone with a very aggressive MS may opt for HSCT, Lemtrada (Alemtuzumab), Ocrevus or Tysabri. All have more risks but are much more effective. Someone with a mild or benign MS may opt for Copaxone, which is less effective but very safe. So many people here are conflating causation with correlation. Anecdotal reports of symptoms worsening after treatments are unfortunately often highly influenced by our own interpretations which is why you need a double blind study where the patient doesn't know, nor does the doctor, who is one which treatment. I know of a woman with MS who refuses all western treatments, who has claimed her MS to be "healed" but also has persistently declined and now can not walk, all the while thinking she is doing better than with meds. Truth is, she never tried medications, she probably would have been better being on a DMT, but she has convinced herself she is well despite all the objective indicators to the contrary. I've also had a good friend die of a very treatable cancer treatment for the same reason - the misguided belief that western medicine is evil. The reality is treating MS is hard, doing proper research to tease out effective treatments on a complex disease is hard, and DMTs don't offer anyone a guarantee, so people then sometimes gravitate to a guru who claims to know how to heal them. For some with benign MS this is fine, for the rest of us, this is dangerous.

Why is there no study on diet, vitamin D or amy other natural means?

There is no study on Diet, Vitamin D or amy other natural means because there is no money to fund them like the deepeenpockets.bigbpharmanhas to fund studies I'm their own best interests.

Do DMDs prevent relapses?

DMDs only prevent relapses. There’s no way to determine how many (if any) relapses one would have if not taking a DMD. One may have relapses while taking a DMD; there’s no guarantee. These horribly expensive drugs do nothing for already existing debilities or assisting with symptom management. Affording a drug is not the whole story; just knowing the price ($50,000.00+/year) is being added to your lifetime maximum is mind blowing. This is even more amazing when I recently read one drug company is making $3billion/year on its MS drug. This would only make sense if it CURED MS. I have to post my disclaimer now, at my neurologist insistence, I am taking a DMD now.

What are the symptoms of MS?

Those symptoms included numbness, vision and balance problems.

How many FDA approved treatments for MS?

Don't be in denial. "Now that we have 16 FDA-approved treatment options, there's something out there for every MS patient," says Dr. Ben Thrower, medical director of the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta, Georgia.

Can MS give up on dreams?

Don't give up on your dreams. "A lot of people with MS are diagnosed in the prime of their lives, and when they get an MS diagnosis they suddenly feel limited," Freeman says. "But most often barriers are self-imposed.".

Is there a hard rule for multiple sclerosis?

For the most part, there are no hard and fast rules for people who suffer with multiple sclerosis. That's because every patient faces a unique set of challenges. Even so, most experts agree there are definite don'ts everyone who has the disease shouldn't ignore.

Can high cholesterol and depression follow MS?

High blood pressure, high cholesterol and depression can all follow an MS diagnosis.

Does exercise help with MS?

Don't ignore exercise. "There are plenty of studies showing exercise can improve a host of MS symptoms, including walking speed, balance, brain fog, fatigue, even depression," says Dr. Léorah Freeman, a neurologist at McGovern Medical School UT Health/UT Physicians in Houston.

Can an MRI detect MS?

Dr. Freeman agrees. "An MRI can detect MS activity even if the patient is feeling fine and enables us to treat the symptom before it progresses," she says. "MRIs can not only help to prevent relapses but can help doctors to prescribe medication that targets the patient's particular problem.".

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