Brooke Pelczynski was finishing up her junior year of college when she was diagnosed with relapsing remitting MS (RRMS). Now 28, she’s still trying to figure out the best way to treat the condition she will live with for the rest of her life.
"My first treatment, Avonex (interferon-beta-1a; a weekly self-injection) simply didn’t work for me," explains Pelczynski, who lives in Brooklyn, NY. "My second, Copaxone (glatiramer acetate; as a daily injection) triggered an allergic reaction. I moved on to Tecfidera (dimethyl fumurate); a twice-daily pill, but I came off this when my hair started to thin and fall out."
Next for Pelczynski was a once-daily pill of the Gilenya (fingolimod), but that proved to be unsuccessful for her, too. In fact, she started experiencing a new symptom: an uncontrolled motion of her hand and arm where it "pulled up and looked like a claw."
She’ll soon start getting a monthly infusion of Tysabri (natalizumab) instead. While a once-a-month treatment can be convenient for some, Pelczynski travels a lot—and now she'll have to make sure she's in town on certain days.
Even though Brooke's experience has been frustrating so far, it's not that uncommon. It can take quite a bit of experimentation to get the MS formula right. Not only is every case of MS unique, but so is each person's response to treatment.
Her story highlights another MS truth, too: That there actually are many options to try. When you consider that even as recently as 10 years ago MS medications were very limited, having all these choices is a good thing.
But like a lot of people with MS, Pelczynski is still looking for the MS treatment that will shift things for her. Her experience shows how unpredictable MS can be, and that no treatment comes with a guarantee. However, there is consensus on one aspect of treatment: Treat MS early and be aggressive.
A major consensus document published by multiple health care organizations and foundations around the world in 2016, "Brain Health: Time Matters in Multiple Sclerosis", makes the case for this approach with one very specific goal in mind: to preserve as much of your healthy brain tissue and physical function as possible by minimizing disease activity.
Rich Giacopelli, an engineer in Ridgewood, NJ, diagnosed with RRMS age 32, says making his initital treatment decisions was relatively straight-forward because he was quickly sold on this approach.
"I wanted to fight the disease aggressively because I wanted to feel as though I did everything possible and not have any regrets that I should have tried more," he says. "I knew it was a degenerative disease; I felt like I was fighting for my future life."
Ultimately, the best treatment for you is one that makes sense for your MS, not someone else's. The challenge is making sense of all the options and finding your very own way forward. You don’t have to forge ahead in the dark, however. We’ve broken down the pros and cons of each type of treatment, so you can figure out what works with your life.
Understanding DMTs for MS
Once your diagnosis is confirmed, your doctor will likely talk to you about trying a disease-modifying therapy (DMT). These medicines slow the progression of MS and "disrupt the body’s immune system and reduce the inflammation affecting the central nervous system," explains Said Elshihabi, M.D., a neurosurgeon and founder of Legacy Brain & Spine, a private practice providing brain and spine surgical services in Marietta, GA.
In fact, DMTs are the reason the early-and-aggressive approach for MS is possible. Along with changing what's happening in the immune system, they can minimize the accumulation of lesions in the brain and spinal cord (aka the multiple scleroses), and lessen the frequency and severity of flares, according to the National MS Society.
DMTs are available in a range of forms (pills, injections, and infusions) and dosing schedules (from daily meds to twice-a-year infusions). As you read through the options below, think about how they might fit your symptoms and lifestyle.
If you're comfortable with the idea of giving yourself regular shots, injectables could be a good choice. Depending on the drug, dosing ranges from every other day to once a week. Some do require refrigeration though, so if your schedule is erratic, they might be a trickier to accommodate. Options include:
Avonex, Rebif (interferon beta-1a)
Betaseron, Extavia (interferon beta-1b)
Plegridy (peginterferon beta-1a)
Copaxone, Glatopa (glatiramer acetate, including generic equivalents of Copaxone at varying dosages)
Common side effects of interferon medications: headache, flu-like symptoms, easy bruising, easy bleeding, seizures, depression.
These types of medicines are administered by a healthcare provider via an IV every four weeks or so. Each session takes about three hours, which can be a deal-breaker if it's hard to get out of work or kid duty. These medications are typically prescribed if your relapsing MS is highly active or if you didn't respond to other drugs. They include:
Common side effects of infusion medications: joint pain, fever, fatigue, nausea, and fever.
Pills and Capsules
Oral medicines may be the easiest to take, but they do have to be taken daily at the same time. (Get yourself a fun pill case!) The oral capsule Fingolimod (Gilenya) was the first pill to get FDA-approval to treat MS. These medicines include:
Tecfidera (dimethyl fumurate)
Vumerity (diroximel fumurate)
Common side effects of pills and capsules: headache, diarrhea, nausea, sinusitis, flushing
Treatment for MS Relapses or Flares
Even with your regular treatment, relapses can occur and symptoms can flare. Depending on the severity, your doctor may recommend steroid treatment, especially if you're having significant trouble with vision, balance, or strength. Common ones include:
Doctors usually prescribe three to five days of high doses given intraveneously in the hospital or a clinic, followed by a course of oral steroids that's gradually tapered.
People experience side effects of corticosteroids differently, and some don't notice many at all. Others find they have trouble sleeping, mood changes, or an increase in appetite. Other effects, like an increased vulnerability to infection, are possible, too.
Treating Primary Progressive MS
RRMS is by far the most common form of MS, affecting as many as 85% of people when first diagnosed. But some people hear that they have a form of the disease called primary progressive MS (PPMS). While people with RRMS go through periods of disease flare-ups and remission, those with PPMS usually have to deal with a more progressive disease course from the start.
There's only one FDA-approved treatment for this form of MS: Ocrevus (ocrelizumab). It's a monoclonal antibody drug, which means it specifically targets one substance—in this case the CD20 protein—and it's given two times a year in the form of an infusion. That twice-a-year schedule can be highly appealing.
The FDA approved the drug in 2017 for PPMS as well as RRMS. It can cause side effects in some people, such rash, itchy skin, hives, cough, fatigue, shortness of breath, fever, and nausea.
The Cost of MS Treatment
Treating MS can cost a lot. This can be major stress for young people just starting out with careers and families. In fact, price tags can nudge some people into taking a job that might not be quite right for them simply because it pays for quality health insurance.
That said, having limited income or no insurance shouldn't stop you from getting the treatment that's right for you. "Most MS drug companies do assist with cost to allow patients to have proper therapy at little or no cost," says Dr. Elshihabi. Pelczynski says she gets all her financial help from the drug companies. "I enrolled in Gilenya’s patient financial help program when I found out it cost about $8,000 a bottle," she says. "There's no way on earth I would ever be able to afford that."
Getting Pregnant on MS Treatment
Even if you're nowhere near having kids right now, you might still worry about how your treatment will impact a future pregnancy. While data are very limited, there are currently no MS drugs that are completely safe during pregnancy. Every medication has a different washout period that you need to follow before trying to get pregnant—and that goes for for men as well as women, says Dr. Elshihabi. Yes, you'll need to plan carefully, but you might be doing that MS or not.
Lifestyle Tips to Help Manage MS
Whatever medical treatment you choose, make an all-round healthy lifestyle with plenty of exercise and nutritious food a priority. It makes everything you else you do extra effective.
There’s even evidence this isn’t just wishful thinking. A study published in the journal Neurology, for example, found that a healthy lifestyle (eating a healthy diet, exercising regularly, maintaining a normal weight, not smoking) was linked to less depression, fatigue, and pain for people with MS. The study involved nearly 7,000 people separated into five groups based on how healthy their diet was. Those in the “healthiest diet” group were around 20% less likely to have severe physical disability or severe depression.
"Diet, exercise, mental health, and rest are important factors" in MS, says Dr. Elshihabi. "Exercise can improve spasticity, mobility, pain, and strength. Anti-inflammatory foods and supplements such as vitamin D, omega-3, and omega-6 can also be beneficial."
Annoying and sometimes game-changing problems linked to MS—pain, depression, dizziness, problems walking, itching, sexual function, bladder problems—can get in the way of the life you want to be living, too. Remember that most of these obstacles have solutions in the form of medicines and treatments, so be sure to mention them all to your doctor.
When it comes to a serious chronic illness such as MS, dealing with it well hinges on your state of mind, too. Don't be shy to ask your doctor about therapy or medication if you're feeling depressed, stresses Dr. Elshihabi.
MS in Everyday Life
"I have constructed my entire live around living with MS and not allowing it to get any worse," explains Katie Silverthorne, who was diagnosed with RRMS at age 23 and is now 39. She lives in the U.K. "I listen so acutely to how my body is and never ever stress it in a way that I know it doesn't like. For example, alcohol makes me feel very poorly, so I don't drink at all."
Giacopelli's advice to other young people with MS is simple: Commit wholeheartedly to whatever treatment you decide is right for you, because you'll be in this for the long haul. He went all-in in other ways, too, co-founding the non-profit, Advance the Cure, to raise awareness and funds for MS research and patient assistance in 2017.
And Pelczynski is proof that having MS doesn't mean you can't pursue your ambitions. She's pursuing her dream career as a designer and illustrator. "I'm just trying to live my best life without letting MS take over," she says.