Hello all, I was diagnosed with MS in January, 2014. I first started with Gilenya but I got worse. My neurologist stopped the medication, which I'm grateful for. I've been on Tecfidera for the past 3 weeks. I haven't seen any changes, except for the flushing. There has been no improvement with my walking, it's pretty much the same. I've read that Protandim is very helpful for MS. Has anyone experienced any changes (+ or -) with Protandim? My neurologist recommended for me to continue with Tecfidera and not try Protandim. I've read only negative comments on Tecfidera. I also mentioned this to my neurologist and told me to ignore these comments and to stop reading them.
I'm really freaking out because I don't want to get worse like I did with Gilenya. Can someone let me know how they did? Thank you
The last sentence of your question suggests that you only want to hear from others who have taken Tecfidera and felt better. There are many patients who report feeling better on Tecfidera; I see them everyday in clinic. But these individuals, almost by definition are not the ones posting on the internet. Let’s talk about this a little bit further.
I have personally taken a days worth of Tecfidera once and was intrigued by the flushing, but did not experience any other problems. I have also tried interferons and Copaxone in the past to get a sense of the side effects. You may ask, "Why would an MS specialist without MS take these drugs?" Mostly to know what my patients were experiencing and to put to rest the comments I often hear from patients in clinic such as, “you don’t know what it is like to take these medications?” In fact I could have skipped the whole experiment, because I still don’t know what my patients are feeling when they take these medications; I only know how I felt and this is the whole point of my response. You shouldn’t be asking if someone else felt better on Protandim or Tecfidera or anything else for that matter. I can prescribe someone many different treatments, herbal and synthetic, and if I do so with enough conviction and gravitas, as many as 30 % of these individuals will report they feel better. This is what we call the placebo effect.
What you really want to know is whether the treatment you are taking has been studied in multiple, well controlled clinical trials and determined to show a consistent and meaningful benefit with acceptable safety and tolerability. For Tecfidera the answer is a resounding YES. Does this mean it is working in your particular case? Absolutely not. The whole point of MS management today is to set goals for treatment and alter the treatment as early as possible, if these goals are not achieved.
The real question you should be asking yourself and your doctor is, “what is our (you and your doctor) goal(s) for treatment with Tecfidera and when will we know that this goal is not being achieved and require an alteration in our treatment plan.”
This has nothing to do with anyone else on treatment with Tecfidera. This is all about you and your individual set of problems and concerns. The art of medicine is in helping people frame or interpret their concerns in a way that allows for effective solutions.
As for Protandim, I have nothing really to say about this treatment. There are zero published or presented clinical trials in MS patients, well designed or not. In vivo or animal model studies are useless for determining efficacy or safety in MS. The list of treatments found to be useful for animal models of MS is almost endless but few have demonstrated any benefit in humans.
The best reason to talk to people about their experience with a treatment is to understand how they handled particular problems or side effects experienced during their time on treatment. For instance, it was a number of patients who told me about eating peanut butter or almond butter with Tecfidera to reduce the gastrointestinal side effects like epigastric pain and nausea.
Good luck to you
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego