Ampyra

[mariagno]

I had taken 4-AP in compounded form years ago but did not feel much difference.

I started Ampyra ER 2 months ago and have been a little surprised.

I don't walk much (falling results in bone breaks) but I do exercise on a recumbent elliptical and use leg weight machines.

Huge difference in strength, control, and stamina. I have definition in my legs again.

The real change was being able to virtually stop by Baclofen and Gabapentin intake.

I had been taking 60 mg of Baclofen a day and 900-1200 mg of Gabapentin a day.

Now, most days I don't take any of them unless it is a cold day or at bedtime if the pins and needles are too uncomfortable. The dosing now is very occasional 10 mg Baclofen and 100 mg of Gabapentin.

The downside is Ampyra is really expensive.

Has anyone had similar experiences?

I take it twice a day but sometimes it gets in the way of sleep. Does anyone take it just once a day?

[julie_]

I understood that because Ampyra is an MS medication and anyone else who would be able to get their hands on it would pay through the nose. May I ask how you came by your supply? What do you mean that it gets in the way of sleep?

4-AP does help me. 20 mg/day plus 20 mg/day of baclofen. Both in 5mg doses. I wonder if Ampyra would benefit us all. Do you know if any research is being done on this drug for AMN patients?

I was diagnosed in 2011 and my symptoms are still manageable. I am fit and in good condition but I feel the progression. I do get tired if I walk too much, say half an hour non-stop. That's when I could trip and fall.

Glad to hear that it's working for you!

[mariagno in reply to julie_]

I pay through the nose. My insurance is a high deductible so I pay a lot for 4 months and then nothing for the rest of the year.

My doctor wanted a baseline with Ampyra due to the consistent release. Then we will switch to compounded forms.

It took a lot of phone calls to the manufacturer, the insurance company, and the doctor to get a trial over a few weeks. The manufacturer used a copay company to manage the expense.

It is temporary.

The dosage is twice a day. As long as I get the second dose in by 7PM, I am good. Otherwise, I can't sleep.

I exercise and lift weights 6 days a week and have dropped 50 pounds. The Ampyra has improved the weight and length of time, I can tolerate.

Thanks for the info.

[julie_ in reply to mariagno]

Hi, I was wondering how you were doing. Is the Ampyra still working for you? Did you switch off to the compounded version, 4-AP? Also, are you still off baclofen?

I read that you were in a wheelchair because your legs had become weak. Can you explain what was happening? I seem to be experiencing alarming weakness in legs and losing what little stabilizers I have in my lower back and hips. This has been in the last two weeks as I traveled from home in NYC to London, so I wonder if I can attribute this to the long flights.

The medications don't seem to work right now but maybe my body just needs to re-acclimate to my time zone?

[mariagno in reply to julie_]

I am still on Ampyra ER because I have met my deductible and I have no out of pocket costs until January 2019.

I have cut my dosage to once a day in the morning. It was seriously messing with sleep.

A generic version was approved in September. I will be looking into that cost.

I have now been off Baclofen and Gabapentin for over a year. I feel great.

Ampyra is still working well. I am still using the wheelchair but I can use my walker more often. I can lift weights with my legs at the gym and use the recumbent elliptical with just my legs.

My legs are strong, I just don’t have enough control to walk in a stable fashion. Falls resulted in injuries. Wheelchair was good at avoiding this.

Spasticity is good and bad. The constant involuntary pulses can be annoying and cause pain. That is why doctors prescribe the anti spasm drugs.

But, the muscles tightening is how we stand and walk. When you relax those muscles, the result is weakness of the legs.

I have said before, doctors tend to over medicate. Curing one ill can create new ones.

Talk to your doctor about reducing your meds. Do it slowly. You are looking for the equilibrium points where symptoms are reduced while physically you are at your optimum.

I was on fairly decent levels of baclofen and gabapentin. Mentally, I felt like I was in a fog and physically I was fatigued and week. I hated it and made the change.

Stretching, exercise, losing weight, adding vitamins, and eating right was my commitment. The process took months and I had to raise my pain tolerance. But after a few months, I felt more like my old self and the pain levels reduced.

Cold weather greatly impacts the spasticity. Dallas is different from New York. You may have to keep the legs warm through tights and warm showers or baths. Get an electric blanket. I got heated slippers for my feet.

I also found high levels of salt makes things worse. The salt causes swelling in my legs adding to the uncomfortableness. It also can increase nerve pain. Try reducing your salt load each day. I went from 3500-4500 mg a day to 1500-2500 mg a day. Makes a big difference and if I go out for dinner, I immediately feel nerve pain again.

Finally, keep a diary. Don’t change everything at once. Pick one variable to change and try it for 10 days before adding another. Write everything down.

Good luck and let me know if I missed anything.

[julie_ in reply to mariagno]

Thanks for your update.

I took 2 transatlantic flights in the last 3 weeks and I believe combined they've taken a toll on me, especially with changing time zones.

I don't like taking medication, so my dosage of baclofen and 4-AP are at the minimal of 20mg/day each, taken in 5mg dosages. It is because of brain fog that I limit the amounts. I also have a tendency to forget to take my dosage. Usually I'm fine but I don't let the day go without taking the next.

Do you now only take 5mg of Amprya in the morning? I've never taken Ampyra, so I don't know how it compares to 4-AP which does not interrupt my sleep. I'll keep an eye out for the generic too.

I do exercise, stretch, keep my weight down, added b-complex, d and magnesium and follow a modified paleo diet. Traveling certainly doesn't help with any of the above! I am surprised to hear about the salt. I don't use a lot of salt when I cook, but when you aren't home, things get dicey. I'll make a note to observe when I go out for dinner.

The New York winters definitely have an impact on my spasticity. The snow and ice make it so much worse since I can't balance. I think this winter I will start requesting to work from home on snow days.

Since you're limiting your medication, what is the affect on your bladder/bowel?

I journal everyday which includes AMN. I will see how I fare now that I won't be traveling for some months and am able to get back into my exercise and diet routine.

It's wonderful to hear you've made improvements in your condition. Thanks again for sharing.

[mariagno in reply to julie_]

Flying even short distances results in leg swelling for me which causes issues.

I take Ampyra 10mg extended release. Pretty much the same ingredients but you only take once a day so you don’t have to remember especially if you have lots of hectic days.

Neither drug had any impact on my bladder. I take Oxybutin for that but only if I am out all day or traveling. I am semiretired so at home a lot.

Keeping the legs and feet warm are important. I use heated slippers made by Volt. But I have used hunting socks and those heat packs for gloves in my socks.

[julie_ in reply to mariagno]

Wow, thank you for mentioning the swelling and the salt intake. I think my pain is coming from these issues! I rested for 36 hours before beginning my day normally and the swelling has returned.

I will be sure to get home sooner at least for the next week to rest and monitor my salt intake.

[mariagno in reply to julie_]

Fitness Pal is the app I use to track calories and sodium. The free version is great. If you use a fitness watch, your exercise can be tracked, as well.

[julie_ in reply to mariagno]

I tried Fitness Pal once but I didn't like it, however I didn't use it for the sodium intake. Since the paleo diet is about full fat unprocessed whole foods, I don't track calories. I haven't had a problem with weight, but it's something I put effort into as I tend to gain weight naturally.

I'm busy resetting my regular habits since my recent travels have caused some disruption!

My swelling I imagine is easing up but every day is different.

[mariagno in reply to julie_]

You might try making sure you are also getting enough potassium for the water retention.

healthline.com/nutrition/6-...

[julie_ in reply to mariagno]

Thanks! I was beginning to wonder if I had gained weight but more likely it's water. I hope the swelling/water retention gets relieved very soon.

This does make me wonder how I'll manage future trips. I've never had these problems on long flights before and I used to travel transatlantically quite often. I've slowed down only recently as my mobility has gotten worse in the way of spasticity. Is the swelling/water retention AMN-related?

[mariagno in reply to julie_]

Some light compression socks might help with the flying and lower leg swelling.

Try to work the calf muscles while on the plane. Even just sitting and pumping your feet like you are driving a car will work. The calf muscle has a big responsibility of pumping fluid back up. If you can, pack an exercise band and use it while on the plane pumping with your feet.

I do it while working at the desk. 5 minutes an hour feels great.

optp.com/REP-Band-Resistive...

[mariagno in reply to julie_]

The swelling of lower legs is due to lack of mobility and the change in gait especially for those of us dealing with toe drop. The ankle movement in the fullest range is what pumps the fluid back up.

We bought an adjustable bed. I usually lay down before I go to sleep with my feet high and my head low for 30-60 minutes and then keep my feet as high as I can tolerate when I sleep. By morning the fluid is gone.