Medication debate with doctor?
 

How much can an ms patient debate with their doctor on treatment medication? I checked out the national ms foundation's ten approved medications, and I have to say two or three of them there's simply no debate necessary. I'm not taking them thank you very much.

And as I am still a dedicated member of the amoxicillin club for infection treatment, I would prefer an older treatment that has built up a history. For my first choice it would be Coxapone. I'm not particularly concerned about allergic reactions even ones that may develop with continued exposure. Give me an epi-pin with it if you must, I know the signs of an allergic reaction. But some of the newer ones I simply don't trust yet.

My devotion to amoxicillin has saved me from being prescribed some of the newer antibiotics that are now being linked to serious health problems, including neurological damage. There's no school like the old school :D. Though admittedly if I were a bit worse off than I am currently, I'd probably happily don my little white mouse ears and tell them test away! I just don't see the necessity for it at this point, gimme a few years....

But how much can one debate with their neuro over the medication? Especially when the effectiveness, old or new, is unknown. Does that open it up for more personal choice? Or remove the choice and the neuro simply picks the one they like?

Arguing for amoxicillin with the GP is easy, he can point out that the newer ones are more effective, but can't tell me that my amoxi simply isn't going to work it is effective but does require a larger dose on some infections, and has tried to argue the finer points of a tiny pill once a day versus up to two horse size pills four times a day. Neighing and tapping my foot twice is my answer. And my strep, bronchial infections and whatnots have cleared up in a few days. Only once did I not argue, it was a mild tonsil infection, figured it wouldn't matter... And it became 'resistant' pneumonia that finally cleared up after near hospitalization when the doctor gave me amoxicillin, having basically run through the other antibiotics with no signs of improvement only worsening of the infection.

That makes for an easy debate, it's proven effective and has been around long enough for patients to report any and all possible side-effects including any and all that might crop up down the road after treatment. All of the MS treatments lack measurable 'effectiveness', and really both the new and the old are babies in the world of medicine concerning side-effects. So how can I enter a debate with the neuro? And should I even try?

Any potential side-effects are going to be dependent upon my body's chemical make-up, ditto for the effectiveness. But I really don't want to play Russian roulette at this time, or at least since I'm going to be playing regardless, I'd like the chamber to be as empty as possible.

Starznight,

Multiple Sclerosis is one of the few, if not the only disease, in which the patient can choose which medication to take.

I doubt there will be a debate as the majority of Neurologists either give the patient information packets about the treatments or tell them to research on line and let them know which medication they would like to try.

Some Neurologist do have a preference but it is still your choice.

It is ALWAYS your choice. Period. You sound like a well informed consumer/patient and a good self advocate. Keep doing your homework and discussing with your doctor, but don't ever forget, they work for YOU, not the other way around.

Hi there

Ultimately, this has to be your decision - a doctor cannot force feed you with drugs that you are not prepared to take.

There are many options out there for us (which is fantastic) - for me, even JC+, my preferred choice is Tysabri - after 8 or so years of Betaferon. It works and doesn't interfere with my day-to-day life.

My Neuro wanted me to take 4-Amino Pyridine (a version of Ampyra) - but I had a really bad experience with it - so I stopped.

But that is just ME - your choices, symptoms and experiences are YOURS. You will find what works for you. It's pretty scary when you first start on this journey, but things will (hopefully) settle down and you will find some clarity to help you with your choices.

Best of luck

i agree with all that it is YOUR decision...although I have heard that some MS centers push certain DMDs over others...
my neuro suggested Ampyra also. I had problems with it and told him I didn't want it any longer. He did make the case for the drug but didn't fight me on my decision.
Your neuro is a part of your team-not the manager! You along with your loved ones work together to find the most effective and least harmful treatment.

i was given the choice of med when i was first dx'd. i was on copaxone for 10 yrs and i'm 65. i decided, with my neuro's input, to stop. i've had a stable course and knock wood i've been ok.

sometimes antibx's don't work anymore. you can have, or the med can have, a resistance. then it's time to try something else, provided you tolerate it.

i've had talks over time with several of my drs about meds and have been right a few times. don't stop researching and learning. you are your own best advocate.

I agree 100% that we need to be our own advocate and we certainly have the right to refuse a certain medication. However, imo, it is never a good thing to come off like a total "know it all". Actually that's probably pretty good advice no matter what the topic and our background. :winky:

If we remain open minded and interested in learning about different therapies and wiling to respect/consider the provider's rationale for why they suggested a certain medication we might just learn something.

Thank you everyone, I know I have the right to refuse anything. But was concerned a bit concerned over refusing and getting 'kicked out' sort of deal. Seeing a neuro is new to me, but I've had a bad run of ortho doctors down here. The second you don't go with their plan is the same second you can give up on them doing anything else productive.

When I refused to have my ankle casted for a second time (a great thing since they misdiagnosed it from the start) I was basically kicked to the curb, even though the doctor said he didn't really think it would help, but if I was unwilling to shell out another three grand in casts, there was nothing more they could do for me.

So that was a bit of my concern there aren't many good doctors around here, if I have to give up this neuro for such tactics, I'm pretty well up the proverbial creek. Especially since she's the only one that treats MS within an hour's drive of my home. A three to four hour drive in the summertime heat down here... So not happening. But I will cross my fingers that she is reasonable when it comes to treatment. She was nice enough during our first meeting, and thorough in explanations so really hoping it will be the same case when it comes to treatment.

As for how much debating you can do with the neuro about MS medicines, I'd say it depends on the neuro. In my experience most neuros (I've had 3 or 4 over many years--#4 shouldn't really count because I saw him only twice and he was laughably bad) like to keep conversation to a minimum and seem like pretty busy people. I tried to find out about the MS meds by going online to the Websites for the different drugs--and reading MS message boards in a big way. If I had questions about a drug, I called that company's toll-free number and asked.

They're more than willing to deal with your questions. They have a lot at stake here. An MS patient on an MS drug might be on that drug for life.

I was on Copaxone for nearly 3 years and was also concerned about reactions. There are the site reactions, which many people have. Those are usually bearable and there are ways of preventing or easing them.

But there's also the "IPIR" (immediate post-injection reaction). I've never had one of them but was concerned because I live alone and understand that some people have had to go to an ER with this reaction, even though the Copaxone literature tells you that the reaction normally lasts only less than half an hour and tells you what to do to get through it on your own.

It's not an allergic reaction. According to Shared Solutions (the Copaxone support people), it's "like" an allergic reaction--but isn't. I've never heard of an epipen being useful for Copaxone reactions.

Your neuro should not dump you just because you don't want to be on any MS drugs. I still have a neuro even though I went off Copaxone about 3 years ago. I just see him much less often. When on Copaxone I saw him once or twice a year. Now I'm down to once every few years.

Just got back from neuro appt. and she was really great when in came to the meds, as well as surprised that I had already researched them and even more so that I had chosen what she also felt might be the best starting point. Now hopefully I qualify for the assistance in filling the rx, otherwise I might be forced to change to a different one?