No FDA-approved treatments available

In another thread, HVAC said, "Neurologist do not like to put you in [the PPMS category] because there are no FDA approved treatments for PPMS. Insurance companies do not have to pay for DMDs since they are not FDA approved."
~ "PPMS - how were you diagnosed?"
http://www.medhelp.org/posts/Multiple-Sclerosis/PPMS---how-were-you-diagnosed/show/1235216

This is a good point, which I did not realize.

Some doctors may very well be looking out for our (ie, patients') best interest when they drag their heels in diagnosing us.  The delay might give patients a chance to try various treatments.  And this might apply for other diseases (besides PPMS), for which there are no FDA-approved treatments, yet.

Anyone have experiences or thoughts on this?

[Lulu54]

I'm thinking that the FDA approval is whether the drug is safe to use and recommends what diseases it applies to.

But doctors can always prescribe drugs off-label - meaning for a use other than intended.  eg: my doctor had me try an incontinence drug that was designed for men with enlarged prostates. Obviously that problem doesn't apply to me  so my use was off-label. My insurance questioned it but eventually allowed me to try it (btw, it didn't help!).

I'm wondering if dmd's could also be rx'd for PPMS patients?  The thing is there is no proof that they would work.  

Sorry, but I am just thinking in words here ... this might make no sense at all.  

Back to your main question - yes, I believe there are doctors out there who continue to rx one of the CRABs even though the patient is probably SPMS or PPMS.  These drugs have mainly been tested on RRMS, because that is where the bulk of the MS patients are and provide the best opportunity for the drug companies for their return on their  investment.

This is a good question to ponder-
be well, Lulu

[Wind_and_Water]

Lulu, thanks for your feedback.  By the way, would you please explain the meaning of "CRAB" and "DMD"?

[Lulu54]

Sorry - we tend to assume everyone knows the lingo around here....

dmd = disease modifying drug  - this is different than drugs than are used to manage symptoms.

the DMD's that are regularly used first are the CRABs - Copaxone, Rebif, Avonex and Betaseron.  

There is another DMD - Tysabri, which is usually considered a last resort treatment because it has some risks involved.

I hope that helps.

Lu

[Wind_and_Water]

Yes, it does.  Thanks.  :)