How to choose a disease modifying therapy for MS and when to switch

While there is no cure for MS, there are many Disease Modifying Treatments (DMTs) available. All of which are scientifically proven to minimize new lesions and decrease the amount of relapses, thus reducing the amount of disability caused throughout one’s lifetime.

In short, they are a big deal. A lot of the major advancements have happened in the last two decades and it is truly amazing to think of all the progress that has been made in such a brief time.

The great thing is there are loads of options now, but you still have to find the med that works best for you. Everyone is different - there is no magic solution, but there are factors to consider when narrowing down options.

*Note: After this section, I will outline my own medicine journey for illustrative purposes only and also explain reasons to switch meds.

1 - Guidance from your doctor

Not all MS meds act the same way in the body and depending on how MS presents for you, your medical history, and more, your doctor can make a recommendation (or maybe top 2 or 3). Then you can ask questions and do research. Often your doctor can provide you with clinical data and also share insight with what they have seen (in general) anecdotally in their own clinic.

2 - Your lifestyle

Do you faint when you do injections? Can’t remember to take a pill to save your life? Well, there are a variety of options - infusions, injections and oral meds - so you can make it fit with what you are comfortable doing. It is imperative you pick something that works for you because the medicine will not be effective if you can’t adhere to it - choose wisely!

3 - Cost

If you are considering one of the more recently approved meds that is still patent protected (aka is under 10 years old), the manufacturer will likely have a copay assistance program to help with the cost that remains after insurance pays their part. Often you have to apply for this - your doctor or calling the pharmaceutical company that manufactures the drug can provide you with more information. In many cases they significantly cut down the cost, like a lot!

4 - Side Effects

Everything you put in your body will have a side effect, medicine is no different. That’s not to say some of the potential side effects may not be fun, or may even be scary, but try putting it perspective. First, all possible side effects need to be included in the info about the meds, which is why you will read about 500 million possible things that could happen. Second, know that everyone is unique. Just because someone experienced a side effect, doesn’t mean you will. Third, and I am saying this as someone who is not a fan of side effects even mild ones, but tbh you have a chronic illness, it is amazing that meds are available, and if that means you may have a (mild) side effect from them, so be it. I would rather know I am helping protect myself long term. Again, though that is MY perspective and you don’t have to have the same one.

5 - Risk vs Reward

What I think is risky or rewarding may differ from you, but regardless you have to weigh your options. Is it worth taking a med and possibly experiencing side effects? Is it not? That is up to you, but definitely do your research and try your best to stick with facts vs hypothetical or highly unlikely scenarios.

I need to preface this with a few things - First, this is MY experience, not advice. Please discuss all medicines and any changes with your doctors. Second, I was diagnosed with RRMS in 2005, the options for medicines were minimal. There were only 4 injections available at that time. Since more meds were being brought to market, I’ve switched meds quite a bit in order to find one that works the best for me.

DMT #1 - Rebif (Dec 2005 - Dec 2006)

I started Rebif shortly after being diagnosed and was on it for about a year. At the time it was a subcutaneous injection 3x/week that was taken at night to minimize the side effects disrupting your life. I experienced the flu-like side effects with each injection and they tended to carry over into the next day (fatigue, body aches). It also caused a more intolerable side effect which was a deep bone pain in my legs that made them extremely heavy. My walking slowed and it was challenging to maintain a healthy lifestyle or even get around campus. I ended up switching because of that.

DMT #2 - Avonex (April 2007 - Feb 2008)

I took a few months off between Rebif and Avonex and then started Avonex in the spring of 2007. I liked it because it was an intramuscular injection that was only 1x/week. It was a slightly larger needle and still had the flu-like side effects but they only happened once a week so I was happy. However in February of 2008 I had a relapse which caused Optic Neuritis. That damage never healed and Avonex was clearly not controlling the relapses - my doctor and I decided to switch to a different injection.

DMT #3 - copaxone (March 2008 - Jan 2011)

Copaxone was the next injection I chose to try. At that time it was a daily subcutaneous injection (but now I think it is 3x/week). The pros were that there were no flu-like side effects, but over time a major con started to add up. The injection site reactions were absurd. I tried using the auto-injector, I tried manually doing them, I had multiple nurses come to the house to review the procedure, but nothing helped. Most of the time the injection site would turn into a large baseball size welt and burn for hours after. Sometimes it would leave dents in my skin too. Once it got to a point where I was really dreading the injections I switched, because I didn’t want my adherence to be compromised.

DMT #4 - Betaseron (May 2011 - April 2014)

Although there were other meds like Tysabri available by this time, I chose to try the only injection I hadn’t been on yet - Betaseron. It was a 3x/week subcutaneous injection, which was better than doing injections every day. The side effects were similar to Rebif and Avonex in that they caused flu-like side effects, but I do not remember these being as intense as the other meds. I ended up switching from it because I had a relapse that affected my mobility. That was concerning to me and so I decided it was time to try some of the newer options available.

DMT #5 - Gilenya (May 2014 - April 2016)

Gilenya was the first once daily pill I was on. At the time it was such a weird experience to be so excited and nervous to switch to an oral med for MS. It was the first time since being diagnosed in 2005 I did not have to deal with injections. The first dose was a long-ish day because you had to hang out for 6 hours so they could monitor your heart for complications, but other than that it was smooth sailing. It is the only MS med I have been on that I did not experience any side effects on, and damn that was nice! However, nothing is perfect, and Gilenya did a poor job at controlling relapses. I had one on it and debated about switching, but decided to give it one more shot. Then, 6 months later I had another issue, which was confirmation it was time to say bye to Gilenya.

DMT #6 - Tecfidera (may 2016 - Sept 2019)

Tecfidera is a twice daily pill, which I know for some is a pain, but I didn’t mind it. I already have AM/PM meds to take so it was easy to incorporate into an already established routine. Overall the side effects were not that bad (imo). The first few weeks there was GI upset, but taking the med with a healthy fat (like peanut butter or full fat yogurt) helped and eventually it went away. I did experience flushing throughout the entire time on Tecfidera. It happened a couple times a month (maybe?) and it was uncomfortable. Basically my body would feel like it is burning up out of no where and I would get very red and flustered for an hour or so. I had a relapse on Tecfidera but it was minor and so I chose to stay on it. Then the next relapse affected my swallowing and so I decided it was finally time to decide between Ocrevus and Tysabri.

DMT #7 - Ocrevus (Nov 2019 - Present)

I ended up choosing Ocrevus for a few reasons - First, I was around when Tysabri was pulled from the market initially. I was also young and studying Pharmaceutical Sciences and it was a sobering experience to be trying to navigate MS in college and then a medicine that is approved for the condition I have and had been studied had adverse effects. While I don’t feel that way today and I know Tysabri is a game changer for many people, I was not ready to be on it back in 2019. Second, I tested JCV+ and if I were to switch to Tysabri it would require more monitoring. Being JCV+ on Ocrevus does not require that. So, Ocrevus it was!

Funny enough back in Nov 2019, my biggest concern with being on Ocrevus was the immunosuppression. At the time I worked in very public and thus germ-y environments - no matter how much you clean, a fitness studio and a retail store are not as clean as a personal office. But, it wasn’t going to stop me from starting Ocrevus infusions. Of course then the pandemic happened which added anxiety around being on Ocrevus, but I chose to stay on it (after obtaining info from the manufacturer on how it acts on the immune system)!

To begin, Ocrevus is infused in two half doses two weeks apart. After that it is infused every 5-6 months, with the infusion taking anywhere between 3-6+ hours, sometimes longer. Personally, I receive it every 5 months and do the longer infusion time of 6ish hours, since that seems to minimize side effects from the actual infusion more.

As far as side effects, the pre-meds of Benedryl (50mg) and Steroids (125mg) definitely make me feel wonky on infusion day. The benedryl is sedating (and drying) and since the steroids are usually not, it is just a weird in between space to be in. I do enjoy the quiet time of infusion day though! I usually try to rest more for a few days after the infusion (or longer if needed), but other than that I go back to regular life. The only other thing to mention is that it is common to feel worse (more fatigued or more MS symptoms) leading up to your next infusion. That is why my doctor and I moved my infusions from every 6 months to every 5, so now I don’t have a crappy feeling month leading up to my next dose.

The last small thing to note (but again, this is my experience) is that I have noticed much drier skin around the infusion despite proper hydration and lotion constantly. I also have noticed some hair loss, but that said, those are both things that could have many causes and it is hard to attribute it to the Ocrevus.

Note: independent of the med I was on, I was ALWAYS very adherent as a patient. To me, it is an absolute gift that these meds are available. I can probably count on my hands the amount of times I missed injections or pills. I also understand that not all meds are perfect and as I mentioned before, putting something in your body can and will cause side effects, you just have to decide which ones you can tolerate vs. not.

I think I have written it plenty of times, but just in case you didn’t pick up on it yet, switching meds is a personal decision and when to do so depends on a lot of things. In my experience, I have switched meds when I’ve had relapses or if the side effects were too much.

Everyone has their deal breakers of when a med is no longer cutting it, and you have to figure out what yours are. Some possible reasons to switch meds are below.

Side effects

If the side effects are not tolerable and/or they are interfering with your ability to be compliant with your therapy, then it may be time to consider another option. You have to take the medicine consistently for it to work and while rarely missing a dose is acceptable, if you find you are missing more or dreading taking your med b/c of how it makes you feel, you may want to entertain switching.

Same goes for adverse events, if you experience those, talk to your doctor and figure out a game plan.

Logistics

As I mentioned earlier, most meds have copay assistance programs and if they don’t there is likely a generic option, but if cost is getting in the way of taking your meds, you may want to look into switching or other possible assistance programs.

Lifestyle

I took injections for a long ass time, then I did oral meds, then infusions. They all had their pros and cons but if the med you are taking does not fit into your lifestyle and what works for you then chat with your doctor to see what else is out there.

Breakthrough disease activity

This is a big one - while the meds are not perfect, they are very efficacious and if you are having new relapses, new lesions or progression you (and your doctor) may want to chat alternatives. Of course the meds won’t stop everything, so be realistic, but also know that there are other choices out there.

If you read through my med timeline you know that there were two times I had relapses on the medicine and I chose to stay on it to give it a second shot. This was a nerve wracking decision because of the unknown factor. Will staying on the med cause a relapse and what will it affect? There is no way to know without trying, so just figure out where you stand with it all and do what works best for you.

Family planning

If you are planning a family it is very, very important to include your doctor in the conversation (I know, sexy right?). But seriously, some meds you need a wash out period before trying, some you really shouldn’t get pregnant on, and you may need to alter your therapy prior to getting pregnant so get your doctor involved.

In the end

I know it is frustrating with MS to not just have clear answers - what med to take, what will help the most, how long to stay on it, etc. Everyone has things that are more important to them than others and so I suggest making a list of your priorities and then working with your doctor (and doing your own research) to figure out a solution. While there are unknowns, the good news is that leaves you a lot of space to customize a treatment plan that works for you.