Tecfidera & Not Diagnosed?

[alkalinebecky]

Hi, everyone. I'm a "limbo-er" and just had a follow-up with my neuro today. Had a spinal tap, two MRIs, (with one lesion), an evoked potential test, and blood work. It's only been a couple of months since my first symptoms, so I count myself lucky to have at least found something. Today, my neuro told me that due to my family history, symptoms, and test results, that he is "75% sure that I have MS." He started me on Tecfidera. Well, he sent in the paperwork to the pharmacy... We'll see if my insurance pays for it, since they barely pay for anything else.

I've worked in the pharmacy industry for years and I HATE taking medicine. I'm terrified of starting this med and I'm skeptical of starting a med for something that isn't even 100% diagnosed. Is this standard? He said that it is and that it's better to start treating early, but what if I don't even have it and I'm taking this medicine for years for no reason?

I just don't want to take any medicine that I don't need. I've already had the Solu-Medrol infusion and that KICKED MY BUTT. I mean, really. I was in bad shape.

I'm just wondering, from people who have been through all of the testing and poking and prodding: what's your take on "75% sure that it's MS?" Should I pretty much accept the fact that I have it? Or still keep hope that I may not? At this point, I don't even care if I do... I just don't want to be wondering anymore. I don't know how people do this for years!

Also, I heard about the flushing and the GI upset and I understand taking probiotics and Prilosec, but why baby aspirin? Just curious. Any other tips are appreciated! Hoping that my insurance pays for it, since they considered just about every other test "investigational" and didn't pay anything.

Becky

[Sarahsue]

Honestly, if it was me, I would probably not take a medication for a illness that the doctor was 75% sure I had. I saw a neuro for about a year who wanted me to take medication for MS and at the last appointment she said, "Well, why won't you take anything?" I told her I wasn't going to take a medication to fix something that she hasn't convinced me I had. I finally had my PCP refer me to an MS clinic. I saw 2 doctors and they both agreed it was MS and gave me reasons for their diagnosis. So now I am taking Tecfidera. I didn't have a lot of side effects and the ones I did have were mild and didn't last long.

My insurance won't pay for the med though and the pharmacy told me it was $5400 a month! I qualified for a patient assistance program through biogen, so I have the med covered for a year and then we will see.

[MSer102]

Technically speaking, your neurologist jumped the gun. The only approved use for Tecfidera is diagnosed MS. But once a medication is approved by the FDA (I'm assuming you live in the US) any doctor can prescribe it for any reasonable use, meaning that it isn't malpractice.

What's odd here is why your neuro is such a wimp about your diagnosis. Tecfidera can do harm, so why he would subject you to harm without having the confidence to actually diagnose you here is puzzling. It might be understandable if he put you on Copaxone, which is considered by many to be the least risky of the MS medicines. But a riskier medicine without a diagnosis would raise a lot of eyebrows.

I think that most prudent doctors would say that if he isn't convinced enough to actually diagnose you with MS then he has no business putting you on a medication for it, particularly a potentially harmful one.

[silversop]

Technically speaking, your neurologist jumped the gun. The only approved use for Tecfidera is diagnosed MS. But once a medication is approved by the FDA (I'm assuming you live in the US) any doctor can prescribe it for any reasonable use, meaning that it isn't malpractice.

What's odd here is why your neuro is such a wimp about your diagnosis. Tecfidera can do harm, so why he would subject you to harm without having the confidence to actually diagnose you here is puzzling. It might be understandable if he put you on Copaxone, which is considered by many to be the least risky of the MS medicines. But a riskier medicine without a diagnosis would raise a lot of eyebrows.

I think that most prudent doctors would say that if he isn't convinced enough to actually diagnose you with MS then he has no business putting you on a medication for it, particularly a potentially harmful one.

Curious.. when you say that Tecfdera can "harm" you... are you talking about the side effects or something else?

Also, if someone stops taking it, do you think that the "damage" from tecfdera can be undone?

Thanks

S

[MSer102]

Curious.. when you say that Tecfdera can "harm" you... are you talking about the side effects or something else?

Both. The something else is the unknown. Sometimes serious side effects don't show up in the relatively short amount of time that drugs are tested before getting approved. One example is the PML that didn't show up in Tysabri patients until after it had been approved and already on the market. And drugs are sometimes pulled from the market when serious adverse effects show up only after they're in use for a few years and millions of people have taken them. Tecfidera is a new drug so it's too soon to know what the long term effects will be.

Also, if someone stops taking it, do you think that the "damage" from tecfdera can be undone?

Well, what I think isn't important. What's important is what the researchers say. And from what I've read it looks like the known adverse effects go away when Tecfidera is stopped.