Drugs and my neurologist: what would you do? Advice please!

[carlos.fonke]

My neurologist doesn't prescribe generics, ever - at all. Every pharmacist I've spoken to about it thinks it's foolish and so do I, but my neurologist has that right.

So, I've been on a name brand through the drug company's patient assistance program for several years and they're now changing their program. I understand, no problem.

I can switch neurologists if I have to, and I guess that's the only option. I can afford generics on my own and I know phenytoin controls my seizures much better than my current drug, name brand Carbatrol.

Can you believe it - my neurologist would prefer I remain on Carbatrol and have several seizures per year, rather than go back to phenytoin and have less or no seizures.

Where does this leave me? Is there any other option than switching neurologists to one who allows generics?

 

[epileric]

I'm not too familiar with how things work in the US but can you explain the problem to your GP & get a phenytoin prescription?

I personally would switch neurologists though because the present neurologist doesn't seem to be working in your best interests. Of course that is just my opinion from what you've said.

 

[carlos.fonke]

epileric, I have an appointment with my neurologist soon about this. Unfortunately, it isn't as simple as asking for a generic phenytoin prescription because they simply won't give one.

It looks like the best option is to ask for a referral to another neurologist.

 

[Crystal11]

Carlos- I have just the opposite challenge. My neurologist keeps wanting to give me generics when I just would prefer brand name only. Generics can come from different companies each month since making it generic gives the right to several different companies. The level of medication in the pills can be anywhere from 80-100% of the actual medication in it. Some people may not have a seizure for a few months and then get a medication where the level is lower, leading to a seizure even though its still the same med.
I just don't trust that idea at all- but also I've had some issues being on generics.
I had to convense my neuro why I wanted Lamictal XR which I did get- I felt like neuro was all for generics when I seem to get tremors if I miss a dose or two- or am late but an hour or so.
XR medications are extended release and means that the medication level is the same for a long time. I could miss a dose or two or even a full day and never know it. With generics, I can feel those wear off which I do not like at all.

So some neuros want to keep the costs down and use generics, while others only do brand name.
I would mention to your neuro that you probably cannot afford brand names- the pharamist usually gives generics before brand name unless the doctor request that brand name med. And I think you can ask the pharamasist if you can have the generic version of it.
I know for me, it cost $944 for Keppra XR and $720. I have Elestat that cost $100 a bottle and a few others that are brand name and are expensive. Its about $13,000 a year I think for my full year worth of medications. I think its more than since I have a few other meds for other things..

Anyway-tell your neuro that you prefer generics due to cost, or something you prefer. Tell him that you probably won't be taking it unless there is the change you want- you might have to argue a little or let them know your serious.
Its your body and your choice on what you put into it. If you feel more comfortable with generics, let him know.

Or if that doesn't work, tell them you are going to change neuros.
Take care
Crystal

 

[carlos.fonke]

Crystal, thank you for the advice. I still haven't made my final decision yet. We have been through this several times over the years, and the only reason I've remained with them is because I've been on the patient assistance program.

I understand the reasoning about a more consistent dosage with name brands, and I certainly can't question that with only my own personal experience. Except, of course, that my own experience has been exactly the opposite.

Unfortunately, there is no generic of Carbatrol yet, although carbamazepine is available in generic form. One can't be substituted for the other.

I'm not saying generics are better. I simply had better control with phenytoin than with Carbatrol. Two different drugs, but comparing my experiences on them I'm prepared to call my Carbatrol experiment done. I will take the slightly worse side effects of phenytoin - which can be worked around - in exchange for low cost, better sleep, and more control over its availability (meaning that I can buy it myself).

I can't imagine having as large a prescription bill as yours!

 

[Nakamova]

Carlos, I had no problem when I was on generic phenytoin, so I completely understand. From time to time I've considered going back onto it, since I had very few side effects (just starting to affect my gums) while on it. My neurologist was concerned about long-term effects on bone health (since osteoporosis may be a genetic problem in my family), so she had me switch. But I think if it feels like the right drug for you, you should go ahead and fine a neurologist who will listen to you and prescribe appropriately.

 

[Endless]

I think you found your own answer. There is a generic drug that works better for you. Your doctor isn't listening to you and isn't working as a partner with you in your best interests.

It seems really clear... Switch docs.

 

[RobinN]

You say your neurologist "would prefer" you stay on the name brand. What if you make an appointment and say "This is what I want to do. No offense Doctor, but I know my body and how I feel on a med. I appreciate that you only want what is best for me, but I WANT to go back on the generic. It is MY CHOICE at this time. Please make that happen."

 

[carlos.fonke]

Endless, I think you have the answer.

Robin, my (soon to be former) neurologist is adamant that generics are inferior. It's one-size-fits-all.

I'm realizing now I should have put this thread in the padded room.

I have been over this with them more than once. It was only through their mistake I started there on a generic from the beginning. I didn't know their policy, so as I normally would, I asked for a generic.

Apparently they made a mistake on the original prescription because I remained on phenytoin (generic) for a full year. Zero breakthrough seizures! The side effects were stronger than with Carbatrol, but nothing a little caffeine wouldn't fix. I'm now tolerating caffeine with no problems.

In contrast, every few months for the five years I have been on name brand Carbatrol, I have had breakthrough seizures. Still, my neurologist insists generics are inferior. This particular generic is better than that particular name brand drug for this specific patient.

As Nakamova said, remaining on phenytoin long-term probably isn't the answer.

This would be my transition to a new drug and a new neurologist.