NEWLY DIAGNOSED

[student01]

i AM NEWLY DX AND HAVE NOT STARTED ANY MEDS YET, MY NEUR. WROTE ME A PRESCRIPTION FOR COPAXONE BUT HAVE NOT STARTED YET MAINLY BECAUSE OF THE EXPENSE. WHAT WOULD ACTUALLY HAPPEN IF I WERE NOT TO START ANY MEDS.? I AM VERY NERVOUS ABOUT STARTING MEDS., AND WOULD THEY GIVE ME A BETTER QUALITY OF LIFE ? IS IT GOING TO TAKE AWAY THE SX I ALREADY HAVE?
SOME DAYS I FEEL REALLY GOOD AND SOME DAYS, LIKE TODAY I AM VERY TIRED. WILL STARTING MEDS MAKE A DIFFERENCE ? AND DO I HAVE TO DO THESE INJECTIONS FOR THE REST OF MY LIFE ? AS YOU CAN SEE MY NEURO DID NOT SPEND ALOT OF TIME WITH ME JUST ORDERED SOME TEST AND GAVE ME A PERCRIPTION, SO I HAVE ALOT OF QUESTIONS???

[patientx]

Actually, if you're willing to go into a clinical trial, several oral meds are available right now.

But to really answer your question, a drug called Cladribine is the pill that is farthest along.  The phase III trial for it just finished, and they plan to submit for FDA approval in the next few months.  The FDA has already agreed to fast-track it, meaning they will hold hearings on its approval quickly after the application is submitted (rather than letting irt sit around for months).  So, assuming the data from the trials looks good, it will probably be approved later this year or the beginning of next year.

Another pill, Fingolimod, is pretty far along in its phase III trial, but I am not sure what the end date is.  I doubt it will be submitted for approval this year.

[Mand125]

Sorry to hijack this post but Lulu I noticed that you said that you are hoping that the newest generation of MS drugs, which will be oral, will be available this year - wow is this a possibility? I have no excuse not to keep myself up to date on these things, that would be brilliant though, I only have to inject every second day and am getting quicker at it but it is a constant reminder about the illness.

Having said that student1, as Lulu says, not starting meds really isn't an option, my only regret is that I didn't start much earlier. Since starting betaseron 8 months ago I haven't had any relapses.

Mand

[meg321]

I am newly diagnosed also, and on my next visit I will start copaxone.
We have medical insurance that we pay thru the nose for but even with insurance it will be difficult to pay even my share every month.

How does anyone manage to pay for it?  WE are not poor even but we have no savings or enough extra income to pay that kind of money.  I may figure it out but it will be difficult.

My Dr mentioned the oral drugs also and it didnt sound like it is too far in the future that we may be using them but they will still cost an arm and a leg.

How does anyone else manage to pay the price for the drugs?  I go on medicare in May but not sure that will help much with drugs, i need to call and find out more.

meg

[Lulu54]

Hi and welcome again to the MS forum.
Let us know if you are having vision problems that we need to answer you in all caps - some of our members have that problem.  

Not starting meds really isn't an option.  You have no idea what is going to happen with your MS and is it worth the gamble if you lose and end up incapacitated from this disease?  No! You really need to take a DMD - there are four recognized ones.  Copaxone is what I am on.  Do I like giving myself a shot every day?  Absolutely not, but I do it because I have many things I still want to do without needing the assistance of others if possible.  

If cost is a hurdle, please call the people at Shared Solutions and discuss this with their representatives-  they have apatient assistance program that you may qualify for.

Will the injections last the rest of our lives?  I sure hope not. In fact, I hope that the newest generation of MS drugs, which will be oral drugs, will be available before this year is done.

Be sure to read our health pages about DMD's - there's lots of useful information there.
I'm sorry you have MS, but am glad you have found us here and hope you will stick around.

my best to you,
Lulu