coomoob wrote:The neuro gave me all of these sample information packets...big "dvd holder" looking packets....even a over the shoulder mail bag with dvd's and info in it. Two of these look like the manual for car! He wanted me to review everything to start making a decision/educate on treatment. I'm so afraid of how much all of this is going to cost seeing the obvious money that was spent to advertise all of these treaments (Betaseron, Avonex, Rebif, Apokyn). How much does everyone pay with insurance for treatment?
I realize how overwhelming this situation can seem. Doctors have put the decision on which medication to use onto the patient. For many without a scientific background it's an extraordinarily difficult decision to make. The marketing materials from the different companies all tend to state that their drug is the best thing since sliced bread and therefore tend to not be too useful. What I found most helpful was reading the Dr's Prescribing Information pamphlets for the different medications. Unlike the marketing materials, these tend to stick more closely to the published information and, if I remember correctly, the language they use has to be approved by the FDA. When I was diagnosed I was in a similar situation with the ABCs. I had all these glossy pamphlets which provided little specific information. However, I discovered quite by accident that each pamphlet had a compartment that was almost hidden and inside these compartments was the Dr's Prescribing Information literature for each of the drugs. I devoured this information with a vengeance. Even with a scientific background, I found that I still needed to use a medical dictionary for terms that I was unfamiliar with. During this process, I even discovered some information about Copaxone which my neurologist was unfamiliar with (I guess that some doctors don't read this stuff or can't remember all of the details). Anyways, this is the process that I continue to recommend to new patients, i.e., digest the information in the Dr's Prescribing Information literature and you will be able to make an informed decision which is one that you'll likely wind up being happy with years down the road.
I've discussed my experience making this decision in several other places for which I've provided some links below. I hope that you find them helpful. Note that if can't find the Dr's Prescribing Information among the materials you were given, then you can always find them online, e.g., http://www.avonex.com
This link is for a newsgroup discussion
which was on Copaxone. I posted a couple of articles in it about halfway down the page. I don't have any personal experience with Copaxone, but it would be a good place to read about other's experience.
On the second and third pages of this ThisIsMS thread
, I have posted some data from the Dr's Prescribing Information literature from both Avonex and Tysabri.
Here's another ThisIsMS thread
in which I posted some helpful information on deciding which medication to go with.
Here's yet another post
to the forums.
OK, one last thread
to reference since this one mentions a couple of books which you might find informative (not with medications specifically but with MS in general).