Hey, I found youse! Newbie to this thread. I have M.S. & want to know if others have tried Ampyra?

[cyberpj]

Quick background:
First symptom in 1985 - optic neuritis, then
off and on tingles, numbness and migraines for 10 years before
Diagnosis in 1995 - left side spasticity and foot drop/leg drag and finally plaques showing on MRI
Betaseron for 10 years, then rising liver enzymes so I tried Copaxone but had heart palps that scared me off
Took nothing for 2 years but was getting weaker and worse
By then liver enzymes were normal again so it was back to Betaseron again for last 3 years; no probs yet
Also taking antidepressants since depression started with initial Betaseron therapy.
Tried ADD med Adderall for fatigue but it's effectiveness faded over time.

Now my neuro wants me to try Ampyra but I'm hesitant due to costs ($1000 or so per month) and also because it lists kidney and UTI issues... I had cancer of the kidney back in the late 70's and they took the whole thing out with some lymph nodes but I've been fine since then. Neuro says kidney function bloodwork is fine and I should go for it but I'm still hesitant because of 50/50 reviews by users and it's so new to the market (only since Jan. 2010 - and we all know how thorough and strict our FDA is, right?)

Anyone here with M.S. try it yet?

p.s.

[ProfessorGAC]

1. Sorry, No

On Betaseron since 1994 (or maybe early 1995). I've tried nothing else. I've got the cerebellar form of the illness so i don't have true relapses or remittances. The symptoms are constant background to me.

Blind in one eye, burning sensation from just above the knee to the bottom of the feet in both legs, minor spacticity mostly in the calves and muscles around the hips.

I know this isn't a popular view here, but i know people who work in R&D at Big Pharma and those are REALLY diligent and careful people. The FDA may get pressured into releasing things on occasion but not one person i've ever met in that industry didn't care about the negative aspects of the drug.

Unless your neuro is on the take from whatever company is making Ampyra, he's taken an oath to do what's best for you.

So, i'd suggest doing it. Now, the money thing is a whole different issue, but fear of it seems unproductive. If MS takes you a piece at a time, is that really better than the potential risk of side-effects? Obviously i say no.

[cyberpj]

3. Hmmm...

I don't have a problem with the workers in Pharma R&D. I do, however, have a problem with the corporations that pressure the FDA to approve drugs before they're properly tested.

I don't believe my neuro is on the take from any drug company and I really don't believe he's the type that would, BUT -- how would any patient know that?

Anywya, I did take it for 3 months. It improved my walking speed slightly but not my walking ability - in other words, I walked slightly faster but not any better.

Then, when I stopped taking it due to cost concerns, I have noticed that the symptoms I had before taking the drug were slightly worse and that hasn't improved in the 3 months since I took it.

My other concern after more research was this study that said:

Sales of Ampyra
In the first quarter that Ampyra was FDA-approved for sales in the United States, Acordia reported $3.4 million in sales. The drug was first shipped to pharmacies on March 1, 2010. About 2,000 prescriptions were written for Ampyra by April 29. The drug is expected to continue increasing sales. The real question, though, is whether the dangers, health care costs and side effects of Ampyra are worth the 35 percent chance of walking 25 feet one second faster.

Q. Does Ampyra cause MS relapses?
A. Some people in the clinical trials of Ampyra experienced a worsening of their MS symptoms when they stopped taking the medication. It was unclear whether this reflected a return to their pre-trial state or an actual relapse, but the FDA did not make a distinction between the two when listing possible side effects.

[ProfessorGAC]

5. I Understand

Look, all these things are personal decisions. The phrase "doctor's orders" is a horrible misuse of the language. Doctor's suggest, patients decide. So, i'm with you on making whatever decision you would make. We just make our decisions in different ways. Nothing wrong with that.

As to the blockquote:
First, i'm curious as to where that study originated. The first paragraph doesn't sound like something a dispassionate clinician would write.

Secondly, the answer after the Q. is hardly damning. It says there isn't enough evidence to suggest the relapses are causatively linked to the drug or whether they are within the statistical intervals of relapses.

So, that wouldn't convince me of much, but of course, we've already shown we make these decisions differently.

Anyway, nice having this chat with you.

[cyberpj]

6. More on the 'ethics' of the FDA -

Glad to see the employees standing up to this but not surprised that it happens -
I believe it's happening everywhere in our government now.
Our once great country should have a new motto: 'We'll do anything for money'.

FDA staffers sue agency over surveillance of personal e-mail
By Ellen Nakashima and Lisa Rein, Published: January 29

The Food and Drug Administration secretly monitored the personal e-mail of a group of its own scientists and doctors after they warned Congress that the agency was approving medical devices that they believed posed unacceptable risks to patients, government documents show.

snip-

Copies of the e-mails show that, starting in January 2009, the FDA intercepted communications with congressional staffers and draft versions of whistleblower complaints complete with editing notes in the margins. The agency also took electronic snapshots of the computer desktops of the FDA employees and reviewed documents they saved on the hard drives of their government computers.

snip-

“Who would have thought that they would have the nerve to be monitoring my communications to Congress?” said Robert C. Smith, one of the plaintiffs in the suit, a former radiology professor at Yale and Cornell universities who worked as a device reviewer at the FDA until his contract was not renewed in July 2010. “How dare they?”

snip-

The scientists and doctors denied sharing information improperly. The HHS inspector general’s office, which oversees FDA operations, declined to pursue an investigation, finding no evidence of criminal conduct. It also said that the doctors and scientists had a legal right to air their concerns to Congress or journalists.

http://www.washingtonpost.com/world/national-security/fda-staffers-sue-agency-over-surveillance-of-personal-e-mail/2012/01/23/gIQAj34DbQ_story.html

[tpsbmam]

2. Ugh.....I haven't. My neurologist actually prescribed it and, careful as I am about meds,

the "kidney" warnings on that one struck me as more alarming than usual so I called my nephrologist before I took it (I have chronic renal failure). He usually okays meds....for Ampyra he said, "absolutely not, you may NOT take it. It's been known to cause seizures in people with kidney problems, and it's too risky for you." This is the first and only med he's nixed for me to take.

The "ugh" part comes in because I wanted to try it, but it definitely wasn't worth it for me! I can't answer for you, though. If you still have a nephrologist, it would be worth asking. But if your kidneys are okay...... If it gives you a hint, my creatinine has been pretty stable for the last 3 years (nephrologist thinks kidney problems were caused by my bladder problems, which I take care of with cathing now) and hovers around 1.6.

My first symptom was fatigue. I went to my excellent general practitioner and asked why the hell I was always so tired. I was a vegetarian and ate an incredibly healthy diet, got tons of exercise, lived a very healthy life. All of my tests were fine -- no problems noted anywhere. He was a great doc but VERY old fashioned -- he was a good friend of my parents and was their generation. He finally said, "Start eating meat. Humans were designed to be carnivores. Eat meat." Me: "But you just told me all my tests were perfect. I'm not anemic or anything. Why, then, should I eat meat?" He just said, "Try it, you'll feel better." I didn't try it.

Two years later, I was up early working (I'd just gone back to grad school) and my whole left side gradually went numb. It started with my leg, then I noticed my lower arm/hand and finally my face. I thought I was having a stroke. Long story short, after much testing, MS was the diagnosis. That was 1986. I did pretty well up to a few years ago -- I finished grad school while working half time and worked in a tough, stressful profession. I managed to compensate, including getting permission to take a midday nap at work, etc.

As for fatigue now, I found the first med that's ever helped me for more than a couple of weeks -- Nuvigil. It's also ridiculously expensive though -- about $400/month. My income is incredibly low now, since I retired, so I managed to get it free through the company. That's an option if you qualify.

Welcome to CHCDS!

[cyberpj]

4. Thanks for the fatigue info (and the welcome) -

I posted more on an Ampyra study and my experience with the drug in a response to the previous poster. Interestingly enough, my fatigue is one of the symptoms that has worsened since starting and stopping the drug.

It's been 3 months off it now and I'm not getting back to my pre-Ampyra symptoms level; fatigue, left-side weakness and left eyesight are still slightly worse than when I started it.

Good luck with your kidney situation. They watch me like hawks since I've only had the one since late 70's but at the point it's still doing the job quite well (especially considering the meds I take)!