One thing to keep in mind, and this may play into the 30% number, is that the oral meds are not the same medicines as the injectables. They have completely different mechanisms of action. Both Cladribine and Fingolimod are immune suppressants. Fingolimod works by keeping lymphocytes in the lymph nodes, and Cladribine is an oral form of chemotherapy. I'm not saying this is good or bad (though, personally, I have questions when long term immune suppression is the way to go with MS treatment). But this isn't an apples to apples comparison, and, if one of the injectables is working for a patient, a doctor may be hesitant to switch.
Having said all of this, the oral meds have shown better efficacy than the injections. Cladribine, which will probably be the first FDA approved (probably in 2010), has shown something like 58% relapse reductions over placebo.
From what I understand, there is at least one valid reason for neuros to be conservative in prescribing the new oral meds. Although the ones closest to getting approved seem to be more effective than the current meds and are certainly more convenient, they also appear to be more dangerous. I don't think they yet know how the cost-benefit analysis will work out.
I don't know if anyone has ever died from one of the standard DMDs. If they have, it seems to be pretty rare. The oral meds seem to potentially have stronger side effects. I am in a clinical trial for FTY720 (fingolimod), which is an oral med and two people in trials for this have died of infections (and this is not from a whole lot of people taking the med for a long time like with the current DMDs). Also, they just recently reported a case of hemorrhaging focal encephalitis, which is an inflammation of the brain and doesn't sound too good to me. (see http://online.wsj.com/article/BT-CO-20090414-708933.html)
sho
I for sure will be looking into the orals! I had a horrible reaction to Copaxone and stopped it and refuse to take the other DMDs currently available. So as soon as the orals come out I will discuss with my neurologist and if they look safe enough will jump on one.
Thanks, doublevision for the great research! :)
jessica
I have to admit that though I knew oral meds where in the pipeline I have been to caught up in my own drama to do much research. You have put me back on course by tweaking my interest.
I am disappointed at the <30% ratio. It appears it is not going to be left up to the patient to make the decision because 1. the neuro will not inform the patient of the option 2. the neuro may discourage the option even if it is known to the patient.
Par for course everything is a struggle. Some days I really do not like neuros.
terry
Very interesting.
I'm wondering how many MS patients currently on an injectible will ask to switch. That of course depends on how many even know about them, which in turn depends for many on their doctors even telling them.
We have so many savvy members here that that won't happen in this group (!) Once they're really on the market, one of us can start a poll asking whether neuros mention this, what members choose, and so on.
Thanks as always, deebs.
ess
Thanks Deeb,
You are a great researcher - I appreciate you sharing even when it isn't the greatest of news.
This is certainly not the response I expected to read about oral therapy. I just assumed that the neurologists are going to be as excited about the prospect of injection-free treatment as those of us who do the daily or weekly jabs.
Shell says it all about the CIS folks ..... :-(
Have you been following the posts here about the Myelin Repair Foundation? Be sure and read their stuff - it sounds promising too and approaches the problem of MS from a totally different angle.
you should be our lead scientist/researcher here!
Lulu
Wow!
This article further shows that Drs are "still" reluctant to follow the 05 McDonald and they are reluctant to treat CIS - it's disappointing to say the least.
I'm so glad to see write ups like this - sheds light on the recommendations and hopefully shames those who are not treating their patients early.
Thanks again,
shell
Great info. I envy your energy and love it when you share these articles and info with everyone!
We are all better when we can go to our doctor informed with up to date info on our conditions and medications available to us.
Thanks for sharing!
Erin :)