Why does it surprise me and infuriate me every time I see sloppy reporting being done on the subject of Gilenya? Maybe this time it had that effect because it wasn't on some message board run by idiots who were doling out misinformation as if it were the word of God himself. No, this time I was caught off guard by The Wall Street Journal.
Jonathan Rockoff wrote an article for The Wall Street Journal that was published today, November 20, 2012 entitled, "As MS Pills Debut, Doctors Prescribe a Dose of Caution". It appears that Mr. Rockoff didn't do much homework in researching his piece, or at the very least he chose not to include a lot of valuable information that would make his article more accurate and less skewed toward sensationalism.
I'm certain the fear of a new medication probably sells more papers than dragging out all the pros and cons of all the available therapies, but for those of us actually suffering from multiple sclerosis and trying to do our own research, he's not doing any of us any favors.
"Still, a talk with her doctor, Peter Calabresi, persuaded not to take a chance on a new drug."
For one thing, the article only interviews one MS patient who has only been diagnosed with MS for two years, has only ever been on one disease modifying drug (DMD), has always done well on the drug and has her MS currently under control.
Where is the counter balance of a person who is actually on one of the oral drugs, for example Gilenya, and has not suffered side effects and is doing well? Where is the person jumping from one injectible to another only to suffer horrible side effects or a lack of efficacy from them?
No, he just dives right in and states, with no further explanation that this woman won't try one of the oral medications.
Well, duh. The very next paragraph goes on to say:
"'I don't have any side effects, and it seems to be working very well for me. Why switch it?' said the 52-year-old from Rockville, Md."
Why would anyone who has been battling this disease FIX something if it AIN'T BROKE?? If you aren't having any disease activity, you have a stable MRI and you are having no side effects, then WHY would you take a chance on anything, new pill or otherwise?
The whole article, from title to the way the "facts" are presented seem to be skewed to try and frighten people who don't have all the real facts.
For instance, the only mention of side effects of the injectibles that Mr. Rockoff made is in this sentence:
He neglected to mention side effects of Avonex, one of the many interferons, like possible flu-like symptoms several days out of the week, possible depression and/or suicide. Likewise, he failed to mention side effects besides injection-site reactions from Copaxone such as an immediate post-injection reaction (This reaction, which usually occurs only once, includes flushing or chest tightness with heart palpitations, anxiety, and difficulty breathing.)
I researched the interferons and wouldn't take them due to the risk of flu-like symptoms that would surely impact my Quality of Life (as would depression and suicide, no doubt).
I DID take Copaxone for the first eight years post diagnosis. I had injection site reactions daily, getting huge, itchy, painful welts sometimes as big as the circumference of a tea cup. It felt like I was injecting battery acid under my skin, very painful. And even though I reported it to Shared Solutions, Teva (at that time) refused to acknowledge that the hardened dent I had at all of the injection sites on my body had anything to do with the use of Copaxone.) Now I see that on their prescribing information sheet they make mention of both "injection site fibrosis" and "injection site atrophy".
It would have been the responsible thing for this Mr. Rockoff to do some real homework regarding all the available options and present them in a format that one might compare the risks/benefits profiles of each side by side. No, he took the easy, sensational way out and glossed over all of the injectibles, choosing to focus his grandiose diatribe on how scary these new oral medications are and giving a not so subtle message that we ought to beware.
Well, here's the counterpoint, Mr. Rockoff: I am an MS patient who has tried -- and FAILED -- on Copaxone. Not only did I have terrible side effects which made being compliant a day to day battle, but it did nothing at all to slow my relapses OR my progression.
I started the clinical trial TRANSFORMS in August 2007 and have not had a single relapse since shortly before entering that trial. It was a double blind, double dummy trial in which neither I nor the researchers knew if I was on the real Fingolimod (Gilenya) or the real Avonex. This study had no placebo but was a study to compare efficacy and safety of Fingolimod to an established, approved MS DMD, Avonex. I did a shot once a week and a pill every day. At the end of the extension phase I was unblinded and told that I had been on the real Fingolimod since the very first dose on August 20, 2007. That's over five years of having not even one single relapse after relapsing at a rate of 3-4 times per year on Copaxone. How's that for efficacy?
The only side effects I have had on Gilenya are a slight drop in heart rate on the initial dose which recovered before the end of the six hour observation period (the observation that is required for all first time patients taking the drug.) I also had a mild increase in upper respiratory infections but that tapered off to nothing after a few months and now I have not even suffered so much as a head cold for well over two years.
I think it's important, when I read slanted articles designed to make people fearful of these new oral medications, that I jump in here and try to balance out the facts.
MS is a terrible disease to have to live with and decisions regarding treatment have to be made on a very personal basis. Hopefully it can also be on an informed basis and not made out of fear instilled by irresponsible reporting.
We are all different and because of that we will all respond differently to the medications. What works for me might not work for the next person. The important thing is that there are new options available to us coming down the pipeline all the time. If whatever therapy you are on isn't working for you, try something different. Research the medications yourself, but not by reading the Wall Street Journal, or message boards fraught with misinformation. Go to the NIH or FDA or read the patient prescribing information sheets like the two I linked to above.
Discuss all of your options with your neurologist. If your doctor isn't willing to listen then find a different doctor. We all need to be proactive about our own MS. After all, we are the ones who have to live with this disease. Try to be as well informed about it as you can.
And don't bother buying a subscription to the Wall Street Journal if that's the kind of "fluff" they're getting by the editor. Just my opinion.