Dalfampridine or Ampyra

[Sandydemop]

hi group! i could use some support around this issue. My insurance refuses to pay for this mediclne anymore so it will have to be appealed. I think/believe it is retribution because they had to pay for my mavenclad (we won the appeal) am i being paranoid? Anybody have a stash of Ampyra you're not using anymore?

[erash]

what’s their (insurance co.) rationale?

[Sandydemop in reply to erash]

they said my walking speed didn't improve 20% (I've been on it for over 4 years and it doesn't just help with walking, it helps my right hand work to a degree.

[erash in reply to Sandydemop]

That seems like something your Neuro or PT could appeal. Btw off label it can also help cognitive processing. Unfortunately I had febrile seizures when I was an infant and they’re reluctant to prescribe for me 🤷‍♀️

[Sandydemop in reply to erash]

ugh. you can have seizures with it. have to be very careful to space the doses out to 12 hours apart. My neuro is planning to appeal according to her nurse. A family doctor turned me down. She's hoping a neurologist will be more understanding. I didn't know it helps with cognition too!

[erash in reply to Sandydemop]

my Neuro is reluctant to Rx for me. I discussed the cog processing with the company pharma. It makes sense since the walking speed is due to nerve conduction speed. The pharma said they just didn’t submit this to FDA so not in the indications. It’s why ur arm improved.

[Sandydemop in reply to erash]

thank you miss E.

[brendaobrien in reply to Sandydemop]

It's amazing what doctors can accomplish when their orders are challenged. They hate insurance companies. I have been on dampridine (generic for ampyra) since it came on the market. My doctor at the time was also a researcher, he put so much jargon in the letter that I was immediately approved with the medication. I have been taking it since 2006, but it is now not working as well. Talk with your doctor!

[Sandydemop in reply to brendaobrien]

thanks Brenda

[Neworleanslady]

I’ve always been getting dalfampridine from rx outreach for $60 per month which is so much less than the $100 a month copay if i went thru insurance. But i went to the doctor this week for my regular checkup and she had me sign up for mark cuban cost plus drugs and if she orders 3 months at a time i can get dalfampridine for $10 a month. ($30 for 3 months.) I created an account and sent her my email address i used to sign up so she said she’d order the 3 months worth from there so I’ll see what happens!!

[Sandydemop in reply to Neworleanslady]

thanks, great idea!

[bxrmom in reply to Neworleanslady]

That's great! Hope it works out for you!

[AngieRowe]

I bought from good Rx or SingleCare last year for $50 ish. I got delivered home, maybe through direct Rx , Iv forgotten who now but it was single care cost. 12 months of $50 month was cheaper than 3 month through drug card.

[Sandydemop in reply to AngieRowe]

thanks so much for the idea!

[dianekjs]

First of all, I’d edit your post to remove the question asking if anyone has any they don’t need. It’s illegal to transfer prescription drugs in any manner to another person,@ and it’s taken seriously. Prescription medications can only be legally taken by the person they’re prescribed to. Second, I doubt the insurance company is holding a grudge or getting back at you, denials and appeals are common for all sorts of reasons. Try some of the suggestions above if an appeal fails, you many be able to get it affordably through a discount program.

[Sandydemop in reply to dianekjs]

you're probably right on all counts.

[sashaming1]

Could you tell if it helps your walking? I didn't notice a difference.

[Sandydemop in reply to sashaming1]

it helps SO much!!

[sashaming1 in reply to Sandydemop]

I'm glad it works for you and hopefully you can get some leads to get some more!

[Sandydemop in reply to sashaming1]

thanks Sasha

[Jesselespaul]

No probably about it. It's illegal and dangerous.

[Sandydemop in reply to Jesselespaul]

ok. i hear you. the probably was related to the other feedback. lets move on.

[KipAngCan]

Hi! I just went through a fight with my insurance company over Ampyra. They wouldn’t pay for the brand name anymore I have co-pay assistance for the brand name only and the generic is still ridiculously expensive. I got the generic through GoodRX but the side effects of the generic were worse than the brand name. Long story short, my Dr did an appeal and got me the brand name. The side effects are still not good but I realized that, at this point, I can’t go without it. I have year 2(1st dose) of Mavenclad sitting right next to me to start next week. I just had a 3 hour phone marathon with my specialty pharmacy over the co-pay for that. I have a credit card issued to me to pay that co-pay and they went ahead and used my personal credit card. I feel like all I do is fight over things related to my MS care. Stress is a factor, right?? I feel like the establishment causes me stress at every turn. Enough of that. Best of luck with your appeal!!

[Sandydemop in reply to KipAngCan]

thank you very much Kip for your thoughtful response. I was switched from Ampyra to Dalfampridine by my insurance and honestly didn't notice a difference. I'm going to try good rx or one of those if my insurance doesn't pay. also i heard about these compounding pharmacies. a friend gets his Ampyra from a compounding pharmacy in Colorado.

How are you doing with Mavenclad? i take my second month dose in two weeks.

[KipAngCan in reply to Sandydemop]

Hi!! In my opinion, since I didn’t research other options, GoodRX was the way to go. I paid $64-68 for it which was much better than $200+ through my insurance. I’m starting year 2 of mavenclad next week. I had no real side effects from dose 1 & 2 other than I noticed I’m losing hair but it’s slowing down and it’s an expected side effect. The good news is, I was told by my mavenclad nurse, that it will grow back. I didn’t have nausea or headache or any of the other listed effects. My past year hasn’t been stellar but I don’t think that’s from mavenclad. I have hope for this next round. Good luck with yours!!

[Sandydemop in reply to KipAngCan]

thanks! so far no side effects from Mavenclad for me. I was nauseous once and threw up right after taking it so maybe that was a side effect. also i had terrible itching all over for a day or two. so ok, i did have side effects but nothing too serious. good luck with your year 2. please share how it goes for you. thanks!

[Fancy59 CommunityAmbassador]

Sandydemop, Talk to both your neurologist and the drug manufacturer yourself. Sometimes the neurologist can help to get you free medicine and other times the drug manufacturer offer free medicine if you qualify. Sometimes you qualify especially if your insurance does not cover a medicine, they will help you out to get on it. Most DMTs I've been on I have not paid for. It's worth a shot. Fancy59.

[Sandydemop in reply to Fancy59]

thanks Fancy, you're the best. I so appreciate the support, hope and good ideas i get here!