I Went Off Amprya again...
 

And I'm going back on.
I was experiencing really bad indigestion again. I read the package insert, and it IS a side effect (I'll have to let my neuro know...he didn't recall this being a side effect when I complained about it).
I went off of the drug on Tuesday. Within 12 hours I was indigestion-free...I felt great, and was sleeping through the night again (the burning was waking me up during the night).
But by Friday, my DH noticed I wasn't walking very well. And this morning, I was doing awful.
I began taking it again this afternoon. I'm going to call my neuro's nurse to ask for suggestions as to what to do about the indigestion. But I'm staying with Ampyra. I've proven to myself that it definitely works for me.

Good luck Deb, I hope it works for you more each day. I hope you get something to take away the burning tummy pains. Do you take it with food or without? I don't know anything about the drug. Good luck :hug:

why is it that our MDs dont know the stuff they are putting us on? I dont mean they have to be a walking encylopedia, but they must be willing to look stuff up, or admit that it may be a side effect and get back to us. I had an MD that was completely blind to the stuff I was on. When I crabbed about pancreatitis they said NO WAY was it copaxone. it just wasnt possible. its one of the first side effects listed!

Its best to be your own advocate and look up the stuff you are taking. Well done Deb :hug:

We have to be our own advocates and believe sometimes we do know more as a
MS victim than our doctors.

I am considering calling his nurse tomorrow to address that and other things. When I see him I'll bring the insert.
Its kind of weird that he didn't know this, since he ran clinical trials on the drug...oh well.:rolleyes:
Walking still hasn't improved since I started back on it but the tummy ache came right back. Grrr.

Have you tried prilosec OTC? You have to take it first thing in the morning about an hour before you eat. I take nexium every morning which is a bit more effective than prilosec.

Yes Barb, I've been taking it for a few years now. And my neuro said the same thing about Nexium, which is what I hope he'll prescribe for me.

Neuro's nurse talked to him...I'm off of Ampyra for good. He feels it's not worth feeling that crummy. The nurse said they've been getting reports of different side effects from it. So I'm off...

From what I have read of this medicine, its boosted walking speed is a temporary result and by the time a year passes, folks are back to baseline or slower. it simply isnt worth feeling miserable all day everyday for such a tiny increase in walking speed.

I hope you feel better. :hug:

Thanks, Dej. I'm going to work also on what I'm putting into my stomach...eat more natural foods. DH actually suggested going gluten free for a few weeks to see if that helps lower sxs/pain level. Ugh...

I thinking I am no longer going to push for a prescription -- even though I am still annoyed with my insurance company for denying me. Increasing my speed in a 25 foot time walk is not all that important to me. What I want is less spasticity so I can walk for more than five minutes without pain.;)

I didn't get a lot of results with walking better with less spasticity until I was over 60 mg of Baclofen per day. As long as I'm taking 60 - 80 mg and some Klonipin, my walking is better until I push too far.

Holly, I was on 60 mg of baclfoen and it did not make a bit of difference. So now I am trying tizantidine and I have noticed a slight improvement. I am on a very low dose so I am hoping my neuro will increase it in another week.