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Kimberly

Nurse Kimberly Asks...

It’s normal to be unsure about changing your relapsing multiple sclerosis (MS) treatment. A lot of my patients tell me they are either nervous about switching, or aren’t sure if their current treatment is working. What kind of obstacles did you face when it came to changing treatments?

Pam Answers...

Facing the obstacles of changing relapsing MS treatments

September 3, 2018

One quote I live by is, “Mom knows best.”

After my relapsing MS diagnosis, I was on the phone with my mom as she helped me process how I might have to endure frequent medical treatments, for the rest of my life. I tended to keep a brave face with most everyone, except for my mom (and my husband, who has also been one of my biggest supporters). There’s something reassuring and comforting that no matter what my age is, she soothes me. With her advice, I started thinking that things might be okay. She reminded me that it was my routine that made my life seem “normal,” and in time, I would make a “new normal.”

There was something safe about routines.

What I feared the most was the process it took to become comfortable with a new routine, like taking a relapsing MS treatment with a different schedule than what I was used to. I just had to take it one day at a time. I pushed forward by choosing my first type of treatment and I eventually found my “new normal” routine.

Just when I settled in thinking, “I found it,” my body gave me subtle clues that jeopardized my new normal. It made me wonder if it was time to change up my routine again. 

The switching wasn’t the part that I was the most nervous about. I wasn’t even worried about how changing relapsing MS treatments would affect me. But adapting through the emotional toll of finding my new normal again, THAT was the most torturous.

I found that the ability to be FLEXIBLE was the most valuable characteristic to learn when you’re living with relapsing MS. Each time I went through another transition, as I switched plans, I discovered it was much easier on me when I could be flexible. How can you still be flexible while at the same time seeking a routine, you ask? It sounds like an oxymoron!

Ready?

Flexibility in your routine. That’s the key.

In general, relapsing MS has taught me to be more open to change. I look back and see that there were so many times I would put expectations on myself that were just unrealistic. I still have the tendency to do that, but to preserve myself, I started developing plans A, B, and sometimes C, to help me navigate and adapt to my circumstances. So, in a nutshell, I found freedom and health when I wasn’t so rigid.

When considering which relapsing MS treatment is best for you, never underestimate what you can do. You are more resilient and capable of doing things than you even realize. Stepping out in faith, with flexibility in your life, will lead you to find your “new normal” routine.

We experience both good and bad days with any relapsing MS treatment. 

In general, relapsing MS has taught me to be more open to change. 

And when you’re considering different relapsing MS treatments or debating whether or not to make a change, always keep those things that are important to you in mind—and remember that you don’t have to settle.

The avenues that my relapsing MS treatments have taken me (they were on roads less traveled, with slower speed limits) have brought me to my destination today. My “new normal.” I can honestly say it’s a good place to be. And, as always, my mom was right.

See What Connie Says
Connie Answers...

Facing the obstacles of changing relapsing MS treatment

One piece of insight I would give to you is to always speak up for yourself when it comes to your relapsing MS treatment. 

If you are under the care of a healthcare provider that you don’t feel is the right match for you, then you need to make a change, because the last thing you want is to be on the wrong relapsing MS medication longer than you should be. A simple solution may be talking to your healthcare provider about your treatment expectations and why you feel your needs aren’t being met. If you’re having trouble communicating that, you may want to consider a different healthcare provider.

If you do decide to switch healthcare providers, you should make an informed decision. Do your research. Browse the Internet. See if your circle of support has any recommendations. Then decide which healthcare provider could be the best fit for you.

Once you’re comfortable with your healthcare provider, knowing when you’re ready to change your relapsing MS treatment is something to keep in mind. I was on my first relapsing MS treatment for about one year. In that year I continued to have relapses about every 3 months. My neurologist and I discussed this and decided to try a different relapsing MS treatment option, in an effort to help reduce the number of relapses I was having. I began another relapsing MS treatment a few years later and I stayed on this treatment for many years.

Over time, as my life got busier and more demanding with my job and my family, I began to be less and less able to take this relapsing MS medication as prescribed. It became very apparent when it came to my relapsing MS symptoms because I was relapsing more frequently.

The difference in the conversation with my neurologist this time was that there were new relapsing MS medications coming onto the market. We decided on one relapsing MS medication that had proven results in clinical studies and would better fit my routine. Together, my neurologist and I kept track of the FDA approval process and when this relapsing MS medication was finally approved, I started on it. This relapsing MS medication did what it was said to do and I saw a reduction in relapses.

After about four years on this relapsing medication, my neurologist notified me that there was a potential serious side effect that had been recently discovered. We talked about the risk versus benefit of this relapsing MS medication, as well as some other options. After getting input from my close friends, family, and the MS community, I had a serious discussion with my neurologist and we decided that a change was needed. I was confident with this, as we had taken the time to look at all of the study results and safety information of treatment options.

Needless to say, my neurologist and I both learned a lot about different relapsing MS treatment options—and whenever there was an issue we kept an open line of communication. In the beginning, I may have been lacking in the communication department, so I was on a few treatments probably longer than I should have been—but once I spoke up that changed. One piece of wisdom I would give you is to always speak up for yourself when it comes to your treatment. There’s no reason to stay on a treatment that isn’t working for you.

See What Pam Says
Kimberly

Nurse Kimberly Sums It Up

If your medication isn’t fitting into your routine, you’re experiencing relapses, seeing new lesions on an MRI, noticing changes in your physical abilities, or aren’t tolerating side effects very well, talk to your healthcare provider. This is especially important if you are unable to take your relapsing MS medication as prescribed.

 

Even if you feel comfortable on your current relapsing MS treatment, these are all reasons to consider a change.

 

You may not be comfortable with the idea of change, but try to be open-minded and flexible. You and your healthcare provider can work together to find a relapsing MS treatment that works with your lifestyle. If you find that having an outline of what you want to discuss is helpful, use this simple guide  to help start the conversation.

 

Yes, embracing change can be scary. However, if switching treatments can help you feel better, don’t you think that facing your fear will be worth it? Tell us what made you decide to make a switch!

Continue the Conversation

Evie

My body hates me. I am allergic to all MS medications. My body builds anti bodies to fight the medicine. I am stuck on my medications. Also I have Rheumatoid Arthritis. Which treatment is the same as MS, suppress your immune system. Not easy at all when your choices are 1 or 2 treatments. Good luck work all your choices. 🌻

Hi, Evie, thank you for reaching out. If you're looking for support, MS One to One offers personalized support, where you can talk directly to an MS One to One Nurse. To register, visit https://www.msonetoone.com/sign-up, or you can call 1-855-MSOne2One (1-855-676-6326). We hope this helps. Please let us know if there is anything else we can do.

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