oh please help

[dunooncampbell]

I was supposed to go on BG12 this months, but it didn't come out in October like planned. Now theory say March. I have treating with IV steroids for one day once a month, since September 2012. They have not done much, no surprise. But, I am lost as to my appointment tomorrow. It was supposed to be starting BG12.....obviously won't happen.

Now what?

On Avonex for years and it was horrible....never adjusted. Then Copaxone.....did well for a while, then didn't. Went on Beta & it was OK......then Ty for 5 months & because JCV + and stopped.

My dr. is not keen on G., but hubby is freaking about our $4k co-pay with all the tests I would have to start G. Help me, please. I don't know what to do. Should I try Rebif? Heard it has side-effects like Avonex....back to Copaxone or Betaseron? Will G. be too expensive? I have no one to talk about this...please any advice will help.

[naphappy]

Sorry= No help here.

I went of C last February because Neuro didn't think it was keeping up with my progression.

Finally decided on G and went through all the testing. Then 3 months to get the Chicken Pox antibodies issue settled.

Last May G had problems and my Neuro's office needed to change observarion parameters.

Decided to wait out the summer for BG 12. Long Summer.

You know the BG 12 timeline...

Just finished my 3rd round of IVSM since Feb.

Still waiting...

I know this isn't helpful, but at least we are in the same boat!

Good Luck at your appointment. Maybe there will be news soon about BG 12's release.

Take Care

[nerako]

We never have an easy choice do we? It is hard and I'm sorry you are dealing with yet another change in meds. I hate that part. Each time (3 for me) I freak out about the cost. I can't decide for you because there isn't any one right answer. I can only tell you that I take Gilenya and am on the Gilenya copay assistance program which pays up to $800. a month for the copay for people covered by other insurance (not Medicare) My doctor's nurse assisted me with the insurance coverage and I also talked to the clinic's social worker. I also spoke with the drug companies support people. Betaserone was OK for you so maybe that would be a choice. What caused you to stop? I would ask your doctor for help with this, tell him you are overwhelmed.

[Leeaura]

Contact your insurance co. To see if they will cover G. If they will, contact the Go Program to see what portion of your copay they will cover. May b all of it. Also, when I started last yr, the Go Program also offered a certain amount toward your ore-testing. I might b wrong, but I was thinking it was around $800. I didn't fool w that cause I only had a small copay for the office visits.

If u want to take this DMD, I'm sure they will do everything possible to get u started.....

Wish u the best of luck

[newbie but goodie]

Gilenya Go has a program that you can apply for them to help you with the blood work and ekg. They don't help with the eye exam but that's a minimal cost compared. Maybe you want to check and see if they can help with that?

[bentvalve]

i was really surprised with the copay assistance. i did not even ask for it. my insurance must have wanted me to pay an arm and a leg for it. so, i get it for free.. don