Is Fampridine a ray of hope for those with forms of progressive MS?
It seems that once a patient goes beyond the realms of relapsing remitting MS into primary progressive or secondary progressive his/her chances of finding any form of relief disappears. I’m sorry, but to tell my Dear Hubby to use mobility devices, cope with it, and move on with your life seems to me to be very unsympathetic.
What I say is, “Hey researchers, quit sitting there with your thumbs up you’re a$$es when it comes to progressive forms of MS. Sure they aren’t as interesting or as exciting as relapsing remitting but geez, r & r is not the only form of MS out there.”
The only drug that seems to be a small ray of hope for patients with progressive forms of MS is Fampridine, which is as yet, not approved by the FDA. That might change in January.
I’ve heard both good and bad things about this drug. Reading the possible side effects is enough to scare the beejeesis out of you. Fampridine might help improve the progressive MS patient’s ability to walk faster, handle stairs better, be on their feet longer, and walk longer distances. For this Dear Hubby would willingly risk the side effects. He’s tired of being tired, in pain, unable to keep his balance, unable to walk far, or to stand for long.
I’ve put a link to Fampridine on the right, under the blog rolls, for those interested in finding out more.
Posted on December 17, 2009, in MS related, Writer, Writing and tagged Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Coffee, Craft of writing, Dead, Disability, Doggoned, Family, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing. Bookmark the permalink. 8 Comments.
Doggonedmysteries 
Whoosh, that was some heavy reading. It would be a wonderful quality of life enhancer if . . . and there are so many if’s. Seems like a sensible approach – we’ll see what happens next month.
I hope and pray Fampridine is a wonder drug because it is desperately needed. Side effects can be very scary – especially for people like me who tend to get them regardless of drug. Doc wanted me on pre-emptive cholesterol lowering drugs and each one he tried caused that dangerous side effect of causing muscles to literally blow out – it was horrible and I decided I’d rather face the chances of high cholesterol than go through the muscle thing again. So much more money needs to go into research and fast! I hope and pray for your hubby that he is able to take this new drug and it works for him so he regains that mobility. Hugs and blessings comin’ your way sweetie!
I have to take medication for an ongoing medical issue and the doctor is always having to tweak the medications and most of the new ones have unpleasant side effects. He wanted me to take one that raises blood pressure (I already take meds for that) and raises cholesterol levels with I also have to take a med for as well so why would I want even more problems with them?
I hope that this medication comes out and works for your Hubby without having the difficulty of nasty side effects.
The list of medications Dear Hubby is on now for his MS takes a whole page. I keep one list in my purse, one in each car, one taped to the inside of a kitchen cabinet door, and I print one out from my computer each time he has to go one of his doctors. I keep an updated list on the computer and periodically print it out and replace the above lists with a new one. There’s no way either of us would remember each medication to list them on paper for a doctor or for EMS if they need to be here for any reason.
The side effects of each one he does take are nothing to take lightly.
One thing to remember about side effects is that during clinical trials (before marketing approval is granted by the FDA) these drugs are tested on hundreds of thousands of individuals. If only 1 of all those people has a side effect (hair turns orange then falls out, for a far out example), it has to be reported as a side-effect. The thing to look for is the percentage of people having a particular side effect. Obviously the higher the percentage, the more likely any one individual can have a particular side effect.
Croneandbearit: There are quite a few other cholesterol lowering drugs that are not in the ‘statin’ family. Ask your doctor about some of them.
Drug companies already invest huge amounts of money into R&D of new drugs and every drug (whether it makes it to market or not) costs the same amount to R&D. Something like 2 out of every 3 drugs a manufacturer develops never gets FDA approval. And of course, drug companies spend billions developing drugs for such life-threatening conditions like ED (Viagra, Levitra, et al), Male pattern baldness (Rogaine & Propicia) and the latest breakthrough medication, Latisse (to help grow eyelashes) instead of focusing on trivial things like MS.
Having said that, let me say that the drugs we have available today are much more efficient and safe than at any time in the past.
For those that don’t know him, Dave is a pharmacist/mystery writer, and a very dear friend of mine. When I have a drug question, I ask him.
i’ll have to keep in mind about dave & I hope your husband gets some relief soon
I just came across your blog tonight while researching Ampyra. In a few short hours, after over a year of medical delays, I will start taking the “walking pill”. The side effects do concern me, but I have secondary progressive MS & I miss doing the things that healthy people take for granted. I was wondering if you could give me some information about if you hubby was able to stay on this medication and if so, if he noticed any improvement. Anything you can tell me would be greatly appreciated.
He was able to stay on it with little to no side effects and is still on it. He had some improvement.