Skip to comments.New Drugs Raise Hope for Patients With M.S.
Posted on 12/26/2011 10:18:34 PM PST by neverdem
Three years ago, Kristie Salerno Kent, a singer-songwriter, was standing in a security line at the airport on her way home from a gig when her legs went numb. From the waist down, it felt as though I was trying to walk through a bowl of oatmeal, said the 38-year-old musician, who has multiple sclerosis...
The medication she was taking to prevent these attacks was losing its effect, so her doctor suggested she switch to Tysabri, one of the newer, more potent disease-modifying drugs, which reduce the severity and frequency of relapses. She also began taking Ampyra, which early last year became the first drug approved to treat any M.S. symptom. She hasnt had a flare-up since...
In M.S., the bodys immune system damages neurons in the brain and spinal cord, attacking the myelin sheath that insulates these nerves. About 85 percent of patients start out with what is called relapsing-remitting M.S., characterized by flare-ups or attacks that cause lesions to form on the brain and that affect the ability to walk, to see and to control the bladder, among other neurological impairments.
These attacks are short-lived, and patients typically recover from them. But more than half of patients eventually develop a progressive form of M.S., causing the permanent loss of these functions.
Once that happens, many of the treatments are ineffective. But the new drugs may slow, perhaps even prevent, the progression that was once considered inevitable for many patients...
There have also been advances in treating specific symptoms of M.S. Within the past two years, three medications have been approved specifically for M.S. symptoms: Ampyra to improve walking, Nuedexta for uncontrollable laughing or crying, and Botox for urinary incontinence and spasticity in upper limbs...
Just last year, the first oral drug for M.S., Gilenya...
(Excerpt) Read more at nytimes.com ...
I believe cgk had a MS list, but cgk hasn’t posted in quite a while.
Merry Christmas, Happy Chanukah & Happy New Year!
Buried in the Times story is a reference to Ampyra, a drug I had never heard of, but which might be of help to me as in addition to ME/CFS I may have chronic i.e. primary progressive MS (PPMS) with lesions so diffuse that they doesn't show up on MRI...so no diagnosis...but still lots of spasticity with me on 40mg of baclofen for six years now.
There was no Ampyra six years ago when I was screened to “exclude” MS, and no treatments for PPMS even if I had it, so this is new.
Now off to find a neuro doc who will give me a test Rx!
Thanks for the article.
They’re sugar coating the situation just a bit (I have MS.)
First off most MS patients start out with the interferons or Copaxone. Why, well partly cost. Insurance companies are willing to pay the $3500 per month for the CRAB (Copaxone, Rebif, Avonex, Betaseron) injectible drugs, but not willing to fork over the 7-15K per month for the Tysabri single infusion (that’s the cost of the drug plus the infusion center) unless someone has “failed” on the other older drugs.
Patients on Tysabri are now being cautioned to only stay on it for 24 months due to the risk of PML (the lethal brain infection.) More people seem to be showing up with it the longer they’re on it. Tysabri also seems to create a rebound effect once you go off. No new lesions while on, and then once off, they seem to pile on. All patients on Tysabri are being tested for JCVirus so they know they’re risk of PML before going on the drug, but truth is 80% of people have the JC Virus latent in their systems. So it’s not the ultimate solution.
Gilenya is still new, not sure about side effects yet...but it’s really hard to get your insurance company to pay for it. It’s a pill, which is nice...but it costs $4000 per month from what I’ve read. I haven’t figured out why the resistence because my Betaseron lists on the receipt as $3200, but I don’t think that’s what the insurance pays...I think they pay in the area of $1700. Anyhoo, for some reason people are having a hard time with insurance.
The new drugs I don’t know much about. My neuro is conservative and doesn’t prescribe new treatments the first year they’re out.
Ampyra is a symptomatic med to the tune of $1000 per month. It’s supposed to improve your walking speed. Many people have found it helps them with fatigue issues as well.
I have a Baclofen pump...don’t even ask what it costs :)... which in my opinion, is a near miracle for spastic legs. So they have made advances in symptomatic meds, and that’s good. But the cost is prohibitive unless you have insurance.
In Relapsing Remitting form of MS, it’s so hard to say how effective a treatment is, just because of the nature of the disease. There are those who have never taken any disease modifying treatment and have a mild course. So it’s a crap shoot, all around.
Too late for my mom. :(
Thanks for the post.
Thanks for your comments.
I came across this video about how this lady beat her MS with the paleo diet. It’s very interesting and informative.