Lots of Q's I forgot to ask neuro today

[HoustonDogLove]

So today I went over my page of complaints w/ neuro today.

we discussed my MRI she said i guess according to the MRI the copaxone is'nt working good enough so now we're going to try avonex. I got a script for balcofen, thank goodness. nothing for fatigue though.

How long does it take for the avonex thing to go through, I am assuming it's through a specialty pharmacy, but she gave me a handwritten script. I can take it to walgreens? I never got a script for the copaxone she called it in I'm pretty sure....Maybe the nurse forgot she was supposed to keep that? Triessent is my specialty pharmacy and it's part of Walgreens so maybe I should just take it to walgreens and they will send it to Triessent?

Does this mean i should stop Copaxone now or keep going til i get the Avonex?

if the number of lesions that show up on the MRI are irrelevant to disease progression how does she know it's not working? I guess you may say I'm in a relapse, i thought the cramps and weird feelings just come with the terrirtory.

[cary138]

Thanks twopack I will try.

[twopack]

PwMS need to become strong advocates for themselves and that starts with researching ALL possibilities.

Try doing some additional research here.  
http://www.medhelp.org/posts/Multiple-Sclerosis/Topic-Wants-Patient-Assistance-Sites-for-Medicine/show/1739860#post_8237519

[cary138]

Well I guess I am going off of Avonex. I got my first month's supply for free. I have 1 shot left and no one at walgreen's will help me find out how I get another month's supply. I called my Doc's nurse too. Getting the run around all the way around. Its annoying that I started this medication and now have to go off of it because no one wants to do their job. Hope all of you guy's have an easier time trying to get any form of help. Good luck!

[HoustonDogLove]

Thank you Ess.
I called my neuro and left a message with my nurse but I probably wont hear anything back til Monday.

I also called Triessent and they couldn't tell me whether to stop the Copaxone or not but they did tell me I could bring the script into the walgreens and they would accept it as a fax if walgreens or the doctor faxed it but not if I faxed it. I could mail it and that would work. Or the doctor could call it in. Good to know.

[essdipity]

Hi. I'd call the neuro's office and say I need some help and forgot some questions about the prescription.

You're right--the neuro's office usually handles the paperwork part of DMD authorization. Since you will be changing prescriptions, the whole thing has to be managed again via your insurance company. They won't balk at this, but still there is bureaucracy involved and it could take a week or two.

Just taking the script to Walgreen's is unlikely to help at all. Some of the employees may not even be aware that Walgreen's has a specialty pharmacy arm. That's how I get my Avonex, and it's always shipped by UPS. You could try calling the specialty pharmacy yourself, assuming you already deal with them to get your Copaxone, but they'll still need to deal directly with your neuro's office ultimately.

Ask your neuro whether or not to stop Copaxone now. I would think yes, if it isn't working, but ask.

Also, I don't believe that number of lesions shown is irrelevant to disease progression, or maybe I think that's an oversimplification. The more lesions one acquires, the more likely they will affect an area with significant consequences, though one lesion in the right place can sure do that too.

Acquisition of new lesions is disease progression, in my view. Acquisition of new lesions that cause new disability is bad luck, but the difference between MS and no MS is lesions. Not just those identifiable on MRI, as these are just a subset of what's there.

It sounds as if you have both multiple lesions and a new flare, and that certainly would qualify as disease progression.

ess