No more Copaxone...What comes next...advice please

[KimmieH]

I had an appointment with the nurse practitioner at my neuro's office today to go over medication options since the Copaxone is not doing what it is supposed to do for me. She talked about a few different options.
I think it is a little awkward that I am given options and get to decide which one to take. How am I supposed to know?
She talked about the interferons, leaning toward Rebif, she also talked about Tecfidera. By the time my husband and I left, that is what we were deciding between. I kind of feel like the Rebif is the next step up the ladder, and the Tec is skipping up multiple steps. Can anyone share with me thoughts and opinions about which route to take. Maybe the advantages/disadvantages to both?

Thanks!

[KevsLuv]

All of the DMTs work differently for different people. Going off off personal experience alone, I would NOT reccomend Rebif to anyone.

The flu-like symptoms were awful for me. It took a day to recover so as soon as I began to feel better, it was nearly time to inject again. I went from rebif to gilenya.

I felt virtually no side effects from gilenya but it dropped my white blood count too severely and I was taken off. Rebif also dropped my counts but not alarmingly low.

Good luck to you. Let us know what you decide.

[jreagan70]

I think it is a little awkward that I am given options and get to decide which one to take. How am I supposed to know?

Well, you're not. The MS treatment meds all have their own kinds of side effects and everyone reacts to the meds differently. There's no way to know how any one person is going to react to any individual med, so you really just have to pick one and get started and see what happens. Your neuro can't know how you're going to react either, so it makes sense to let you pick whichever one sounds best to you (for whatever reason).

There are a couple of exceptions to that. One is if a person is known to have a medical condition that isn't compatible with the medication. In that case the neuro obviously won't prescribe that medicine.

Another reason a neuro will lean toward certain medications is if a person's MS is so active or the person already advanced enough that it's in the patient's best interest to get on one of the meds with the higher effectiveness right up front -- for example, Gilenya or Tysabri rather than Copaxone or Betaseron. Studies have shown that people who start treatment early have better outcomes than people who start treatment later. Starting with a high-effectiveness medication early on follows that strategy (although many neurologists are still conservative and like to start slower and safer).

So unless there's a medical reason for a person to lean more toward certain medications and away from others, having the patient decide which medicine sounds preferable -- which might help ensure compliance with taking it -- is as good a place to start as any.

Because everyone reacts to meds differently, you can talk to as many people as you want to about their experiences with their med, but there's no way to know, and no way to guarantee, that your experience with the same medication will be the same. So if your doctor doesn't have a medical reason to steer you toward or away from a particular med, go ahead an choose for yourself. If you like it, you're more likely to ensure that you keep taking it. If you don't like it, you can stop and start taking a different one. And most of it will be your choice.

[Myoak]

Good question and good responses. May I add an additional thought/suggestion?

Please Google, "201 REASONS WHY YOU SHOULD KNOW ABOUT LDN low dose naltrexone"

Dozens of people with MS who take LDN share their personal testimonies.

Also, an article about LDN appeared recently which I will quote below:

Low Dose Naltrexone for Treatment of Multiple Sclerosis
A Retrospective Chart Review of Safety and Tolerability

Journal of Clinical Psychopharmacology • Volume 35, Number 5, October 2015

QUOTE: "The medical records of 215 MS patients, aged 18 to 65 years, seen in the MS clinic for a 7-year period (January 01, 2005 to May 31, 2012) and prescribed 3.5 mg LDN, orally, once daily, served as the study group. The LDN was provided by a licensed compounding pharmacy and cost the patients between US $30 to $50 monthly."

"Regarding their quality of life and the perception of LDN's effects on MS, 130 patients (60%) stated that LDN stabilized or improved their disease and 75% of the patients reported improved or stabilized quality of life."

"In conclusion, this chart review focused on 215 MS patients who were provided a prescription for oral LDN. The study reports that a significant number of patients found combination therapy of an immunomodulating agent and LDN to be tolerable and possibly beneficial. Some patients preferred to take LDN as a monotherapy. The LDN did not cause any unexpected side effects, and those reported were previously noted in the literature. The LDN did not potentiate the side effects of the immunomodulating therapies that the patients were receiving. Any hospitalizations in this study were related to reasons other than MS, and there were no hospitalizations due to LDN." END QUOTE

If first do no harm were an axiom people with MS truly followed LDN would warrant the first look, IMO.