meds // or no meds??

[VikingKitty]

hi all,

I'm not on any DMDs yet although I was at my neurologist today and he would like to get me started on them. My reasons for not wanting to get on them is both financial and medical. I understand they are very expensive and I don't have great insurance coverage and there are also many side effects.

What are your thoughts on NOT taking meds?

[struck-a-nerve]

hi all,

I'm not on any DMDs yet although I was at my neurologist today and he would like to get me started on them. My reasons for not wanting to get on them is both financial and medical. I understand they are very expensive and I don't have great insurance coverage and there are also many side effects.

What are your thoughts on NOT taking meds?

I am wrestling with the same thing. It is really causing me problems. For the cost side of it, the drug companies should subsidize.

I cannot even begin to start in on the "why" I don't want to do it. But I know many people think I am crazy. I am not saying I am not going to do it. I am just saying this is the largest struggle for me.

[Redwings]

No meds is an OK choice as long as you're willing to gracefully accept the consequences of not being on a med. The hard part about that is that it's impossible to predict what those consequences will be. You might do fine, you might not. Whatever you decide, there's no do-over.

A major consideration is that research has shown that the DMDs are more effective the earlier in the course of the disease they're begun. Based on that, the optimum time to start them is now, as opposed to waiting until the disease has become secondary progressive and the damage has already been done.

The choice that you can live with without regrets is the right choice for you.

[Sara Angela]

Figure out what drug, you might want to potentially take. Mosst of the drug co. have aassistance programs. In the section above this one, has a lisst of the numbers.

Sara

[roo613]

I have always been the type of person who thinks through situations to possible consequences. I really HATE doing injections, and I was happy not doing them for the year I took off. BUT, I also know that I would regret it if I had major problems on down the road and knew that I hadn't done everything possible.

[struck-a-nerve]

Figure out what drug, you might want to potentially take. Mosst of the drug co. have aassistance programs. In the section above this one, has a lisst of the numbers.

Sara

So sad, I did this, picked the one I would use if any. And I cannot afford it. Apparently they only do an income based qualification through my insurance. We apparently make (or did last year when I was working) too much. Doesn't matter that we cannot pay for our pre-recession house and cannot pay our bills if I am not working.

Screaming so loudly in my head and complaining to you all, sorry, so sorry for that. Now I am back at square one. The American way, it's such a dream.

I was just starting to wrap my head around it and now I have to figure it all out again.