Vicki, it has been a while since I talked here. Don't know why I stopped.
I have tried both Rebif and Copaxone for my PPMS, each for about two years. As you probably know, they are not supposed to cure MS, but rather slow the progression. It is therefore hard to know whether they are working. How do you judge how bad you would be if you had not taken them?
Still, I got worse rapidly with both of these medications. I rarely missed and injection, but in those four years, I went from numbness and tingling in one foot to being bedridden. It was reasonable to conclude that these drugs did not work.
I heard about Ampyra. The drug is so new that even the neurologists had not heard of them. My neurologist and I had to both jump through a series of hoops to qualify. I finally got the pills.
I take these once a day, although this is a half-dosage. The full Monty is one pill taken twice a day. There are a pack of possible side effects, but my worst was a sore throat. That disappeared after several days.
My good news is that the drug is helping. It is more than a placebo effect; I can flex my feet more than I could on two previous visits to the doctor. I first noticed it three days after taking Ampyra, although it is not supposed to work that fast. Beware also that it supposedly helps only something like 40% of the people taking it. However, increased mobility, strength, and endurance are a great help. The last two may be placebo, but I will take them anyway.
Hi David,
Welcome back. I know you address this post to Vicki but I hope you don't mind if I respond.
It is good to hear feedback from folks who are actually using new or old drugs to try to treat the disease or symptoms. It is frustrating that the disease-modifiers do not work for patients with Primary Progressive disease. Your story is another example of that.
However, the response you have demonstrated to Ampyra is great!! I've read some stories of patients for whom it didn't help (those unlucky 60% I guess), but many more stories from the 40%. I've also heard more stories about how a difference was noticed in only a few days, such as you experienced.
What was the experience like trying to get the drug? What were the hoops that you and your neurologist had to jump through? How long did it take from your doctor's visit to when you had the medication in your hands?
I've not tried Ampyra and am curious to know if you noticed any other benefits besides the ones you mentioned above. Being able to flex your feet and ankles is a huge deal if that is initially a problem. Whoohooo!
Oh, and did your insurance give you any trouble when you wanted to refill your prescription? Did they need proof that it was helping?
Ok, sorry to bombard you with so many questions. I'm really curious to learn about others' experiences.
Again, really good to see you back. Hope to talk to you again soon.
Bunch of questions in there. Here's hoping I hit them all.
My insurance company was extremely helpful in getting everything done. They contacted Ampyra to get their program rules. They got my doctor to take a short interview and get some blood to show I was safe. Then the insurance company contacted the neurologist to get him to fill out the paperwork in a manner that would satisfy Ampyra. His secretary had to jump through unknown paperwork hoops to meet Ampyra's conditions.
The neurologist filled out the paperwork for a half dosage to check my responses and blood levels before going to the full dosage. He told the insurance company that I only got the smaller authorization when they hunted down.
Additional benefits could be misleading because I am now expecting to get better; what I am seeing could be a placebo effect. Given that, I appear to have slightly greater physical strength and endurance. I recover faster from the exertion of traveling to the bathroom. Whereas before I would need perhaps 45 minutes before I had the energy to sit up, now I might be looking at more like five minutes. When sitting up, swinging my legs over the edge of the bed, and hauling me to a standing position to transfer to the wheelchair, it used to be so hard that I worried that I would soon be unable to do so. Now rising to that standing position is no longer difficult. It may be that I have learned to compensate by leaning over the bureau at my waist, which helps the leverage. Either the drug or experience, being able to stand reasonably faster with less effort is great. One last improvement is improved short-term memory compared to pre-Ampyra. I think it exists, but it is hard to say because I badly want it. I returned to college for an astronomy-astrophysics degree, and memory could determine whether they graduate me or not.
It took more than a month from the time I got the Ampyra prescription to actually having the drug in my hand. Ampyra had conditions for the neurologist, as well as for my general practitioner. I thought the drug would be coming in the mail, so after contacting the insurance company to see what might be the hold up, in just several days the doctor came to get their information, they contacted the insurance company and the neurologist, who between them finally told Ampyra what they wanted to know. I am guessing my total wait time from prescription to pill popping was something like six weeks.
Part of the paperwork problem was convincing Ampyra that a non-ambulatory PPMS patient should get the drug. I had to convince them, through the insurance company, that Ampyra used the drug on people like me simply because it was easier to use walking people in the clinical trials because their speed provided hard data. I think a combination of my doctor, her social worker, my neurologist, my insurance company casework, and their chief staff doctor browbeat Ampyra into accepting me in their program. Now with this success, it may smooth the process for others.