Ampyra and UTIs and Achtar

[Baker298]

Mom's neuro earlier today prescribed Ampyra. I'm checking with her urologist but Mom has had one chronic UTI for the past seven years(neurogenic bladder). Mom's 75. I noticed in the scary fine print that Ampyra might cause UTIs, kidney or bladder infections. Anyone out there who is like my mom in that aspect-you're on Ampyra, did your UTI got bigger and nastier?

Also Mom for the past few years has been getting a one day treatment of SoluMedrol (1g) every six weeks. The side effects are temporary (flush face, Chatty Cathy Sydrome) and so he recommended Achtar. Has anyone out there gone from SoluMedrol (as a preventive treatment as opposed during a relapse) to Achtar?

Her neuro was practically giddy writing up the scripts for her. Mom has not had the best of luck with MDs so we are incredibly suspicious of anyone who treats these meds as the latest Must Have Ginzo knife. Thanks in advance for responding.

[consue65]

Amprya and UTI

I've been on Ampyra since June of 01 and no UTI's. I see a urologist who put me on a generic of Cardura and I have to strain so my bladder completely empties but, other than that, no problems. I've learned over the years that any med has "side-effects" and if a person didn't try a drug because maybe 1% or less experienced severe effects, no drugs would be used and what a waste of something that could help people.

[Redwings]

Hi Baker:
The short-term side effects of Solu-Medrol that you mentioned are typical and, as you noted, temporary. Acthar has essentially the same side effect profile as Solu-Medrol, so changing to Acthar to try to eliminate side effects (especially if they weren't terribly bothering your mom) is kind of odd.

Acthar is also obscenely expensive (about $30,000 per vial) while Solu-Medrol is relatively cheap (about $100), so it remains to be seen whether your mom's health insurance will cover it. (I've never seen Acthar on a Medicare drug formulary.)

There may not be many people using Acthar as a substitute for pulsed steroids because of 1) its approved use in MS being for treatment of exacerbations (although that doesn't prohibit it from being used as a maintenance therapy) and 2) the exorbitant cost.

[Baker298]

Hey Redwings and Consue65: Grazie for responding. Yeah, Mom and I have had a day to sit and think about the Achtar. Mom's insurance considers it a specialty drug and from what you've said wow, it's crazyass special all right (30K per vial). It's terrible having to deal with an orphan disease and the added costs. I've been told her co-pay would be 100.00 which sadly right now is cost-prohibitive. Currently with the Solu-Medrol she has no co-pay (or didn't last year)-we'll see if she does later this month when she gets another maintenance dosage. Also with the SoluMedrol, as an added bonus, her IV nurse comes every three weeks to check in on her (i.e. check for pressure sores, change in mental status). In the meantime, I contacted Mom's uro about the Ampyra and she seems to be good to go on that front. Also, I just wanna pass this on and apologies if I'm redundant but I'm a newbie: Depending on your resident state and if you have private ("commercial") insurance (not Medicare Part D), Amprya has an assistance program that is also NOT based on income and will reduce Mom's co-pay from 100.00 to 40.00. Every little bit helps these days.

[consue65]

Ampyra assistance

I should have mentioned the $40 co-pay! I was so pleasantly surprised when I found this out. My neurologist's nurse took care of the paperwork so I can get this. I am so glad your mom can start the Amprya; be sure to keep me posted on how that works for her.

[Baker298]

Consue65: Mom has a question for you-what time do you take the Ampyra? Mom's usually up by 8:00am which means she'd have to take the second dose at 8:00pm-does starting it later in the day mean it will impact your sleep at the other end (at night)? Again Mom says thanks.

[consue65]

time for Ampyra

I take my dose at 8 a.m. and 8 p.m. I am always awake by then and it is good to take it soon after supper.

[nandiane]

Ampyra Information

I've been on Ampyra since June of 01 and no UTI's. I see a urologist who put me on a generic of Cardura and I have to strain so my bladder completely empties but, other than that, no problems. I've learned over the years that any med has "side-effects" and if a person didn't try a drug because maybe 1% or less experienced severe effects, no drugs would be used and what a waste of something that could help people.

I am trying to find more information on Ampyra. I started taking it in June 2010 and had excellent improvement in energy level. I didn't really think it helped my walking until recently having gone onto Medicare and the cost being so high I thought i'd try going off Ampyra. Five weeks later I find I'm back to being very fatigued and having alot of difficulty walking so I guess it was really helping me. I have been thinking of trying just one pill a day. Has anyone had any experience with that and does anyone have any suggestions for working with Medicare Part D and the MS meds? So far I'm totally confused about what will and won't be covered and am learning that my out of pockets will be very high. Any suggestions/info would be greatly appreciated. Thank you.