Navigating MS treatment options

When diagnosed with MS, understanding treatment options can be overwhelming. Here, I share my personal journey and experiences with different treatments, hoping to offer a firsthand perspective and support for those on a similar path.

My journey with Copaxone

My treatment journey began with Copaxone. This medication was one of my first experiences with disease-modifying therapies. I’ll share what it was like, the injection routine, and the initial adjustments my body went through. It was a significant step in my MS management, and I aim to provide an honest account of its impact on my daily life and symptoms.

Copaxone was the treatment that I was on the longest during my course of MS. When I first started it, it came as a kit. Everything that was needed for the injection, was included . I had to draw up the medicine from a vial. The injection can be done really anywhere  that there is fat. I would prepare the area that I'm going to inject to by cleaning it with an alcohol wipe rub it on the skin for a few seconds. Then I would allow the area to dry. I would hold the syringe in my right  hand, pinch the skin at the injection site with my left hand and injected quickly into the skin.

I only had one incident during taking Copaxone where I had side effects. I felt flushed,hot and very weak. This is a symptom that is reported on the Copaxone website and in the brochure that comes with the starting kit.

I already had the EpiPen nearby as instructed prior to the injection. I was able to get the EpiPen ready.  What I thought was pointed at the thigh muscle, when in fact I was holding the EpiPen upside down. So when I press my thumb to dispense medication it was injected into my thumb. Despite having injected it into my thumb, it did obviously get in my system and I began to feel relief from the side effects.

I was very lucky because my symptoms were resolved quite quickly and they didn't have any side effects from the EpiPen being injected into my thumb. They provide you with a sharps container that you will place your used needle into. When it is full you can just wrap it the tape and throw it in the garbage. You can also take it to a pharmacy.

Exploring Tecfidera

While on Copaxsone, I started to feel that my symptoms were getting worse. The weakness grew stronger, the numbness and tingling in my legs increased and my poor balance had gotten worse. .After Copaxone, I transitioned to Tecfidera, an oral medication that offered a different approach to treatment. I most definitely enjoyed not having to inject my medication. They were so easy to just take a pill.

Initially I noticed some flushing. I thought maybe it was just an initial thing to get passed. After a couple more days it became more intense and started to feel like a mild sunburn. I called my doctor's office and they told me to stop taking it immediately.

Understanding Tysabri

Tysabri represented another shift in my treatment strategy, being an infusion-based therapy. Here, I detail my experiences with Tysabri, from the preparation for infusions to the post-treatment feelings. I'll discuss the monitoring required and how this treatment impacted my disease progression and overall well-being. It's a more intensive treatment, and I want to provide a thorough overview.

This  is usually infused every four weeks into the vein. Before you start you have to answer many questions from the Touch prescribing program. This is to make sure that you are 100% able to receive the Tysabri infusion. The infusion itself takes about one hour. You also need to have one hour period of observation to make sure that you are not having any kind of reaction to the medication.

Before starting this medication you need to have a baseline MRI. As well as some blood test and a Blood draw to monitor for JCV antibodies. They're looking to lower your risk for developing PML , primary multifocal leukoencephalopathy, which is a rare brain infection.

You can find a local infusion center using the TYSABRI HCP QuickStart locator. It is recommended to review the full Dosing & Administration guidelines and discuss any questions with your doctor. 

I have had nearly 100 infusions of Tysabri. I have felt very well during the whole time that I have received this medication. Never have I had a relapse. Also all of my MRIs have come back stable.

I still currently receive Tysabri. As a whole I feel that Tysabri has kept my MS from progressing.

Key advice for your treatment journey

Choosing an MS treatment is a deeply personal decision. While I've shared my experiences with Copaxone, Tecfidera, and Tysabri, remember that every individual's response to medication can vary. My most important advice is to maintain open communication with your healthcare team. Discuss all potential options, side effects, and how each treatment might integrate with your lifestyle. Research thoroughly, ask questions, and don't hesitate to seek second opinions. Advocacy for your own health is paramount in managing MS effectively.