Ampyra/4AP
 

I started Ampyra this week (thanks Wiz!)

If you are on Ampyra or 4AP, how long were you on it before you knew that it was working?

If you went off it, did you notice any side effects from stopping it?

I'm not willing to spend $$ on drugs that do nothing for me, and so far I don't see any difference.

Don't know if you read my thread I posted, RW...
I was on it about a week or two when I noticed that my foot drop wasn't as bad, and I was walking a lot steadier.

But the med just did such a number on my stomach I finally gave up on it. I had gone off of it for a couple of weeks in June, but my neuro asked me to try it again. I went back on in July, but then I called him this week about my stomach/gastro pain and he said just go off. They're getting feedback about patients' side effects, and they are varied (the nurse didn't tell me what they were).
I've been off of it three days, and I notice my foot is already stiffer and harder to pick up...darned if you do, and darned if you don't...:(

This is scary. I am waiting for my ins. to get the papers together so I
can go on Ampyra.

I have all ready serious stomach problems I don't need anything else to
aggravate it.

I think that some of my stomach problems are all ready from some of the
meds. I am taking. How much can a system take before it rebells?


Jappy :(

Hi Riverwild,
I think it varies tremendously from person to person. I could feel it in my nervous system after a few daze but it took 2 or 3 weeks until I began to see it improve my walking.

Jappy, It has not affected my stomach at all. I am on 10 drugs for MS and heart stuff. i am on Cellcept as a DMD for MS. I was worried about that and my stomach, but I'm fine. Again, sx vary from person to person.

Good luck you guys. It has improved my life in a multitude of ways.
-Susan

It only increased my fatigue and I work standing up doing sales all day. I stopped after about a week. My energy is more important than my leg strength (which wasn't bad anyway). I didn't get any other side effects though.

The neuro thought it might help me to do more, longer but it didn't.

Good luck to anyone that this helps. :hug:

Keep us posted on your progress on this RW. I am having increased problems with my legs.

I am paying more attention to some of the new meds on the market.

Cellcept is not a DMD, it is Chemo. From Drugs.com "CellCept lowers your body's immune system".

Hey Flygurl! We miss you hear, ya know!! :) :hug:

I'm going to do the month long trial of the med and then I will let you all know what's up.

So far I have this pain in my lower back and side, like my kidney is falling out, but that could be due to the fact that I haven't had a decent night's sleep for too long, and I slept outside in a tent over the weekend in the rainy weather and my double rising air bed kept getting squooshy cause it was COLD! :rolleyes:

I have to actually get two 8 hour sleeps in a row before I say it's a kidney! :p

Hi Bill, Cellcept is a chemo suppressing the immune system. I, perhaps ignorantly, thought that meant it is a disease modifying drug. Although used off label for MS, it has been much more effective for me than Avonex or Rebif.

Riverwild, I hope kidney and sleep issues resolve quickly.

-Susan

(((((River))))) Dam meds...why can't they help everyone the same..:mad: I know we're all different, but shoot, our bodies are certainly close to similar enough. I just don't understand, how we differ so much, when it comes to meds..:(

I'm so sorry if this doesn't work for you..:hug:

I know you think you're Superchick. but sleep inside in your nice warm bed and for heavens sake stay out of the rain, heat and cold...Idiot!:D

[QUOTE=SallyC;699881](((((River))))) Dam meds...why can't they help everyone the same..:mad: I know we're all different, but shoot, our bodies are certainly close to similar enough. I just don't understand, how we differ so much, when it comes to meds..:(

You are so right, Sally. Ewizabeth said A increased her fatigue. For me it is better than any fatigue medication I've ever done. Once again demonstrating how the same drug affects us all differently. So many variables, so little time. :(

Can i smack you now? It probably wouldn't do any good but consider it coming! Good luck with the trial!

:hug:

OK, it wasn't a kidney! It was sleep. Who'd have thunk it with me??:p
It's hard to say whether this is working for me or not.

I am on the go so much anyway, and I am not sure if it is helping or I am just motivated. I am dealing with an upcoming wedding (the DSD is getting married this coming Sunday!), the man's ex-who is trying to drive everyone as crazy as she is, and MORE changes at work.

I'm going to hang for a month and then if I can't tell if there's been a benefit, I will go off it. I figure that if it is working I will be able to tell then!

I still need to learn how to listen to what my body tells me! I've never been good at it! I envy people who can say that they notice this or that. For so many years I just worked through the pain or shrugged off piddly stuff (or what I thought was piddly stuff!) that I tend to dismiss stuff until it knocks me down. (Don't forget I am the girl who had a ruptured appendix for 24-48 hours before I figured out I was going to die and I went to the ER!)

My new mantra is "You are NOT Superwoman!"

Your not? Way to kill my buzz.

Maybe it is helping? I was certain it was making me feel worse. I could tell in about a week's time.

Ok, here's my take on Ampyra.

It is helping me. It took me awhile to get on the ball and figure out a way to evaluate it. This is not scientific, just my take!

I walked in heels for four hours for the DSD's wedding. First time in years I wore heels and I shed them asap but I walked in them! (I have to qualify this- They fit when I put them on the first time, but when I put them on with nylons, I was a-slippin' and a-slidin', which didn't make it look graceful at ALL! It was more of a "mincing" or a "prancing" than a walk but I survived!)

I get up from a seated position without making "that" noise now. I'm not using the arms of chairs to lever myself up anymore, my legs are doing the work. I still want a toilet that is higher than "chair height" (BTW, that's a freakin' lie, yanno! Chair seats should be three feet off the ground!) but I get up without doing the 1-2-THREE! I find myself leaping out of chairs now- at least higher chairs!

It doesn't do a darned thing for spasticity for me. I'm still stiff and spazzy but it doesn't stop me from pretending that I'm not.

I go further, faster. I hear that's what it's supposed to do, so I guess it's working.

I haven't had any other sides. I forget to take it on time but I've developed a rule. I take my meds now as soon as I get home from work at 7:30 a.m. and again after supper. I'm getting better at it, but still forget sometimes and have to adjust the whole schedule when I forget, since you're not supposed to take them closer than 12 hours apart. I've taken them as close as ten hours apart and haven't had any adverse effect but I don't push it. I haven't had a seizure yet!

I have to drink more water. I'm floating away. The side effect of UTI's scares me. After the one and only that I had, I don't want a repeat, so I am the water carrier! I have a water bottle permanently attached to my hand now. They're like purses, I have a different one for every day! It doesn't hurt but I am getting to the point that I hate water...:p...and bathrooms with short toilets!

I am sure now that none of this is wishful thinkng, so I am going to stick with it for now!

I used 4AP. no results at all. no stomach problems and no response.

Saw the doc yesterday, did the timed walk, told I was faster than any others on Ampyra in his office, I could have run down that hallway, I just wanted to go home to bed in a bad way after only two hours sleep since the day before.

For those of you who have nosy insurance company with an equally nosy specialty pharmacy...the freaking BigBrother pharmacy called him and ratted me out for not ordering Ampyra when it was prescribed! I was enraged by this news.

I told him I made my own arrangement so I could try it first before I ordered and paid a huge copay. He laughed and said he told them that I probably took care of it on my own and would order when I was ready and that he didn't want to hear from them again.

My mission for today is to call the specialty pharmacy and ream out a few people and then place my order...:D..since i am staying on Ampyra!

Anyone else had this lovely intrusion into their privacy from a pharmacy???

Sounds like they might have crossed a legal line.....have you checked that out? Seems to me that the privacy laws should keep them from sharing that type of info......especially on the phone. I'd give them heck and tell them they'll hear from my lawyer.

No, River. I think I'd jump up and down cuss and scream a lot and then I'd call them, like the sane person I am, and ream them out, coherently.:D

Then I'd have my Doc switch Pharmacys.:mad:

BTW, I'm happy it's working for you. I think somebody up there likes you.:hug: