Time for drugs..?

[oso49]

Recently, after scoring much lower on a cognition test than last year and after discovering a lesion on my upper spine after reading the last MRI, my neuro recommended drugs.

He said, "Take your pick. " You want Gilenya, OK." "You want Copaxone, Rebif, Avonex, Betaseron?" "Take your pick." "And if you really want some help, we can get you on Tysabri, but I'll have to send you for a blood test first."

"Let's get started, it could really help you..."

Is this guy nuts???? Any thoughts???

[Scooter24]

At least he is giving you a choice, have seen many here that the dr told them what he was going to put them on with no say in the matter. It really is a personal choice andyou need to look at all of them as far as side effects, frequency, and long term effectiveness. It does look like he is running blood test for JCV antibody before prescribing Tysabri so you can see if you are positive or not. My dr allowed me to make the choice also, but then again I would not have allowed him to say I had to take a certain one only.

[jbell2435]

oso49 - My doc just recommended me to start as well...I just posted about it.

He also gave me a choice between 4 that he would recommend, but also said to let him know if I decided not to and why.

I am really adverse to starting this path and want to wait and see, but worried I will be making things worse. They certainly are not getting better.

Good luck and keep us posted on your decision.

[BigA]

They generally don't advocate one drug over another for (my belief) the following reasons:

1. They all work about the same*
2. Some work and some don't for particular people and you don't know until you try one.
3. Some people prefer fewer shots and more side effects over more shots and fewer side effects
4. It's highly likely that your doctor receives some sort of money, whether speaking fees or research money from one or all of the drug manufacturers and he does not want to show bias.

Did he say "Pick your poison"?

*Tysabri is much stronger but also more dangerous. It's the only one which carries a risk of death.

[Bob698]

If your Neuro wants you to start one of the meds, I'd take that as a recommendation.
BTW, I'm breaking one of my old rules and typing this while I inject my DMD.
That's how big of a deal the shots are.

One thing you really might want to look at is cost. Even with ins. and a deductable, some of these things can get pricey.
Do your homework, ask around, even ask your Neuro which med they would recommend. You can always switch later if your first choice doesn't work out.

[MarkLavelle]

They generally don't advocate one drug over another for (my belief) the following reasons:

1. They all work about the same*
2. Some work and some don't for particular people and you don't know until you try one.
3. Some people prefer fewer shots and more side effects over more shots and fewer side effects
4. It's highly likely that your doctor receives some sort of money, whether speaking fees or research money from one or all of the drug manufacturers and he does not want to show bias.

I'll second all that, and add one data point.

My neuro recommended Copaxone - and only Copaxone - because it is apparently the only DMD that does not suppress the immune system in any way. Not important to most people, but my immune sys got a good dose of chemo & radiation back in 1996 and is assumed to be 'compromised' (which raises one's risk for a new cancer).

So consider yourself lucky to have the choice, oso! Another factor is that some people stop tolerating whatever DMD they're on after a while, and have to switch. Precisely because you have all the options, I recommend getting yourself on a DMD. A mind is a terrible thing to waste (if you'll pardon the inappropriate cliche!)...

Best of luck,
Mark

[Redwings]

Hi oso49:
If you consider approx. 33% effectivity and approx. 65% effectivity to be about the same, then all the MS drugs work about the same. If you consider 65% to be twice as good as 33%, then a couple of the drugs work twice as well as the others. Getting the chance at that kind of effectiveness, though, means taking on extra risk. This is where your neuro could have/should have stepped in and discussed benefit vs. risk, and how much risk might be appropriate for your abilities, symptoms and MRI presentation.

I can't tell from your post whether your question, "Is this guy nuts?" is referring to him recommending that you start meds at all or that he lumped them all together without regard to effectiveness, risk vs. benefit, or indication, and left it all to you without professional guidance.

No, he's not nuts. With regard to the former, research has shown that, in general, people who are on meds have better outcomes that people who aren't, and the earlier the meds are started, the better. His recommendation has sound medical justification. However...

With regard to the latter, it appears that his patient management approach is questionable, and it isn't clear how deep his understanding of MS treatment is, either. It is reasonable to expect that a doctor and patient work together to decide on a course of treatment. It is not reasonable for a doctor to leave all of the decision making to the patient, without professional guidance, knowing that the patient doesn't have the knowledge or experience to be making some of the decisions him/herself. From your description, it appears as if that's what your doctor has done. But to be fair, we only know what you've told us. We don't know what he's really thinking or what he may have said that got by you.

The wording of your post tells us that you aren't even sure whether you want treatment, and you certainly don't have enough information about the drugs to choose the one that's most appropriate for you.

Folks on a message board can tell you generally about drugs (especially if you consider 33% and 65% to be equal in effectivity ), what constitutes good medical practice, and what their own experiences have been. But no one other than a qualified medical professional who has actually examined you and knows your medical history can advise you about what's most appropriate for you and recommend what you should do.

Based on that, my best recommendation is for you to 1) get another opinion from another neurologist who specializes in MS (even if your current neuro is also an MS specialist), and 2) research the different meds on your own so you can have a well-informed dialog with the neuro about whether you really want to be on an MS treatment med and which one would be the most appropriate for you.

[oso49]

Thank you all!

I failed to mention that my neuro was extremly agitated when I told him I was not yet ready to commit to any drug treatment at this time. He was borderline "pushy" and that bothered me.

So..... I've contacted the Sheppard Center in Atlanta for a second opinion; I think I owe that to myself. Like someone on this board once commented..."This isn't a sprained ankle we're talking about."

I will let you know what happens. Thanks again.