Is it true

[figuerpa]

I was in my nueros office the other day and was reading an article in one of the MS magazines that if you are first diagnosed with PPMS or SPMS that insurance will not cover meds for MS because they tend not to help if you have been diagnosed with those. It also said that alot of doctors diagnose as RRMS due to this issue.

Has anyone else ever heard or read about this? Not sure what the name of the magazine was but it has been lingering in my brain since Thursday, so I thought I would ask.

Thanks
Paula

[HVAC]

The new oral drugs hold more promise for PPMS. My theory and it is just my own is that people have had it for decades by the time it actually shows up so that is why the DMDs and Tysabri are not used so much.

My MS Specialist says the DMDs are 30% effective in slowing progression but are pretty safe. The new drugs will be more effective but less safe since they suppress the immune system more.

My Neurologist said the DMD was doing no good and the Insurance would have denied it for me.

Researchers are backing away from the theory PPMS is so different. It may be just subtle and slow in progression at first. It is curious that it has fewer brain lesions.

Alex

[figuerpa]

Thanks Mary,

I was just pondering the question, because of what I had read in my doctors office.

Maybe one day they will find a medicine to cure this MiSerable disease.

Paula

[twopack]

Sorry Lulu.  I was delayed by the dog who needed company while using the outhouse mid-composition and then just sent my post that repeated the info you already gave.

The study of just what the DMDs can do is ongoing but I doubt they will ever be officially trialed for PPMS.  These drugs are also relatively new and there aren't a lot of patients who have used them long enough to be really clear about how they work, how well they will work and for how long they will work.

Mary

[twopack]

Yeah, that's about it.  But that is the nature of those types of MS.  The DMDs claim to help control the frequency of relapses.  If your disease is steadily progressive instead of relapsing then that's it's course.  Symptoms can still be treated and of course that becomes even more important.  I don't think the progressive nature necessarily means the disease is more agressive or debilitating.  I need help here experts.

I'm not entirely sure what is claimed for the DMDs.  For sure, fewer relapses.  I think now the possibility of reducing the number of new brain lesions on MRI but since they don't always show up easily anyway........and sometimes a D.U.M.B. neuro will insist on seeing more to keep a diagnosis.......oh,I give up.

Mary

[Lulu54]

The DMDs have not been shown to be effective with PPMS or SPMS.  Honestly I'm not sure how far the testing has gone because the large population where the $$ to made is with RRMS.  

People with PPMS are mainly treated for their symptoms.  This may well be a totally different disease than other forms of MS - researchers are looking at that possibility.  

Folks with SPMS are often still on DMDs because there is confusion where  RRMS ends and SPMS begins.  And even though they are not approved, many neuros will continue the DMD in the hope that it will be beneficial.


If none of this makes sense, don't feel bad.  It confuses me, too.  

Lulu

[figuerpa]

Thanks everyone,

Next time I go to see my neuro, I will check and see if the magazine is still there. Wouldn't hold my breath though because my next appointment isn't until next month but I will check.

But it is interesting. I never knew that the medicines weren't used for people with PPMS and SPMS, what happens when you are diagnosed with those? Do you just let the disease take its course? If that is the case then MS is scarier than I thought. Not that I ever thought it isn't scary but at least the DMD's help with relapses and slow the progression but the thought of not having anything to help slow the progression is a horrible thought.

Paula

[Lulu54]

Mary and Alex are both right in their comments and thinking.  

FDA approval for the DMD's is only for RRMS.  They can be used off-label for SPMS and even PPMS, but with the cost of these drugs your doctor would have a hard time justifying their use to the insurance company for coverage.



I would love to know which magazine it was in because I am impressed with the honest reporting of this issue.  

be well, Lulu

[HVAC]

Most Doctors are good about not diagnosing you with anything but RRMS if they think the drugs will do you any good at all. This should not be a worry

Alex

[twopack]

As far as I know, the disease modifying drugs are not approved for anything except remitting relapsing MS.  That's the type of MS they were tested on.  I don't know if they are ever used 'off label' as they say, but an insurance company would find themselves justified in denying their use and huge expense because of this.

I believe it is also very often difficult for physicians to classify the type of MS a person has at initial diagnosis.  They prefer to give the diagnosis (yea, right) and then observe progress and patterns for at least a year.  In the meantime, they use the RRMS tag and prescribe a DMD.

At least that is what I've learned hanging out here.
Mary

[jujuminx]

Yikes!  No, I am too new to this to really know much. The more I find out the more concerned I get though.  If you think of it, let us know.

Julie