The decision to use or not use a disease-modifying treatment is a personal one between yourself, your family, and your doctor. Some patients decide to jump in and get started and others wait to see how their MS is going to progress.
Our community has begun to engage in a discussion regarding decisions made once you have been diagnosed. In Mandy’s post, “You have MS, now what are you going to do about it?” she outlines some basic things to consider.
Doctor Nitin Sethi sets the tone of the conversation with "Do I Need to Take MS Medications? Discussing the Pros and Cons" and Merely Me asks "Should You Take One of the Disease-Modifying Drugs? The Pros of Choosing to Take Medication."
Mandy touched on the studies which show Early Intervention may delay the onset of MS in patients who experience a Clinically Isolated Syndrome, a treatment strategy supported by the National MS Society.
In fact, the National MS Society has published a Disease Management Consensus Statement (which you should definitely read in full) that begins with the following:
- The Society recognizes that the factors that enter into a decision to treat are complex and best analyzed by the individual patient’s neurologist.
- Initiation of treatment with an interferon beta medication or glatiramer acetate should be considered as soon as possible following a definite diagnosis of MS with active, relapsing disease, and may also be considered for selected patients with a first attack who are at high risk of MS.*
- Natalizumab is generally recommended by the Food and Drug Administration (FDA) for patients who have had an inadequate response to, or are unable to tolerate, other multiple sclerosis therapies.
- Treatment with mitoxantrone may be considered for selected relapsing patients with worsening disease or patients with secondary-progressive multiple sclerosis who are worsening, whether or not relapses are occurring.
- Patients’ access to medication should not be limited by the frequency of relapses, age, or level of disability.
- Treatment is not to be stopped while insurers evaluate for continuing coverage of treatment, as this would put patients at increased risk for recurrent disease activity.
- Therapy is to be continued indefinitely, except for the following circumstances: there is clear lack of benefit; there are intolerable side effects; better therapy becomes available.
- All of these FDA-approved agents should be included in formularies and covered by third party payers so that physicians and patients can determine the most appropriate agent on an individual basis; failure to do so is unethical and discriminatory.
- Movement from one disease-modifying medication to another should occur only for medically appropriate reasons.
- None of the therapies has been approved for use by women who are trying to become pregnant, are pregnant, or are nursing mothers.
So with all of that information, you might ask - Why did I choose Copaxone (glatiramer acetate) as my disease-modifying treatment? What has been my experience? Am I satisfied with my choice?
When I finally received the official diagnosis in October 2005, I had already experienced years of symptoms (since 1993 at least), a documented clinically isolated syndrome (blinding case of optic neuritis in 2000), and relapses which were significantly impacting my ability to function. There was no question in my mind that I would do what I needed to do to fight this beast.
The question then became WHICH treatment to choose. I did not want to use any of the beta interferon drugs due to one significant side-effect which is depression. I already had a history of depression which goes back decades and didn’t want to have to fight that battle in addition to MS. So Copaxone was my ONLY choice. [Note: Tysabri was not yet back on the market.]
Copaxone is a daily medication, self-injected just under the skin into the fat tissue, but never the muscle (ouch). Injection site reactions are the most common side-effect. There is also the Immediate Post-Injection Reaction which about 10% of patients experience. I’ve heard this described as feeling "like having a heart attack." Fortunately, I’ve not experienced this particular side-effect.
“Copaxone (glatiramer acetate) is a random chain (polymer) of amino acids - Glutamic acid, Lysine, Alanine and Tyrosine (hence GLATiramer). It is synthesized in solution from these amino acids a ratio of approximately 5 parts Alanine to 3 of Lysine, 1.5 of Glutamic acid and 1 of Tyrosine using N-carboxyamino acid anhydrides. It was originally designed to mimic a protein in myelin, called myelin basic protein, with the intention of inducing EAE (an animal model of MS). Quite to the contrary, it was found to suppress the disease and as a result came to be trialed in human MS. For this reason, it was originally believed to act as a decoy by drawing the immune system’s attack away from the myelin. Nowadays, researchers are no longer at all sure how Copaxone works. The is some evidence that it converts the body’s immune response from a Th1 type to a Th2 one, promotes suppressor T cells or acts as an altered peptide ligand.”
[Quote taken from Multiple Sclerosis Encyclopedia.]
You can find a collection of research articles and news releases related to Copaxone on the Multiple Sclerosis Resource Centre’s website. I like that Copaxone is actually just a combination of amino acids, three of which the body produces naturally. Also, it does not suppress the immune system, like the beta interferons do, but retrains the immune system.
Giving myself an injection every morning is not exactly my idea of fun, but it certainly becomes routine. The daily injection is my way of keeping this beast somewhat caged. In fact, I didnâ�™t experience a remarkable relapse until two years after beginning therapy. The medication is doing it’s job. (For injection tips, see Subcutaneous Injections, 7 Tips for Reduced Pain and Skin Irritation.)
At my last MRI (about a year ago), I did not have any new lesions in the brain but did have some lesion activity in my neck. It almost looked like two previous lesions had grown into each other, then spanning three vertebrae C4-C6 and measuring 3cm (which is huge! in such a small space). There were two other much smaller lesions present as well, but the neurologist is pleased with the overall efficacy of Copaxone for me. It seems to be working well.
Do I still have symptoms? Yes. Do I regret my decision? ABSOLUTELY NOT. Have I had difficulties along the way? YES, for an example read my previous posts "Health Insurance Protects from Catastrophic Costs (!?!)" and "How am I Going to Pay for This?"
There are programs designed to help patients obtain their prescriptions, including MS-related disease-modifying treatments. But each person’s experience with these programs may differ. For a list of programs available see "Beginner’s Guide to MS: Need Help Paying Drugs Bills?"
Overall, I’m very pleased with my choice and it seems to be working well for me. The decision is a personal one and nobody should feel pressured into making an uncomfortable choice. Each person has their own preference and prejudice. I hope that gaining knowledge helps you in your choice.
If you have any questions about my experience, please feel free to ask in the comment section. Also, I encourage you to share your experience. Thanks for reading and being part of our community.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.