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September 22nd, 2010
09:19 AM ET
FDA approves first MS treatment in pill form
The Food and Drug Administration (FDA) has approved the first oral drug for treating relapsing-remitting multiple sclerosis (MS), the most common form of the disease. Unlike current MS drugs, which are given by injections or infusion, this new drug, called Gilenya or fingolimod, comes in a capsule which is taken once a day. Taking a pill is much less painful than having to stick a needle in your body on a daily, weekly or monthly basis, which is what many MS patients have to do now. "Gilenya is the first oral drug that can slow the progression of disability and reduce the frequency and severity of symptoms in MS," according to a statement by the FDA's director of the Division of Neurology Products Dr. Russell Katz. Multiple Sclerosis affects about 2.5 million people worldwide, about 400,000 in the United States alone. What causes MS is still not known. It is a disease of the central nervous system considered where the body's immune system attacks the fatty layer that protects nerves in the brain, spine and eye. As the fatty layer is destroyed, scar tissue forms which blocks the nerve signals and leads to a variety of symptoms including difficulty walking, vision problems and/or pain. Gilenya is not an immunosuppressant, explains Dr. Nicholas LaRocca, Vice President of Health Care Delivery and Policy Research for the National Multiple Sclerosis Society. Instead, he says, "it manipulates the immune system in a way that's beneficial for patients with MS." According research presented by Novartis, the manufacturer of Gilenya, this drug cut the relapse rate by 62 percent in newly diagnosed patients and by 44 percent in previously treated patients. Taking a pill doesn't necessarily mean it's the safer says LaRocca. Like any drug, this one can cause possible side effects such as increased blood pressure, reduced lung function, eye toxicity, decreased heart function, and an increased risk of infection. "We don't know for sure what's going to happen until the drug is on the market and it's been on the market a while and a large number of people have been treated with it," he says. Patients should talk to their doctor to see if this drug is a viable option for them, say LaRocca. He adds that some patients may just want to stay on the drugs they are on if they are working well for them. Novartis is the manufacturer of Gilenya, and the company has promised to set up a program to monitor and educate patients taking the drug. In June, an FDA advisory committee unanimously recommended approval for the drug Gilenya. Back in January a series of clinical trials for Gilenya along with Cladribine proved successfull at reducing the rates of relapse and slowing the progression of disability.
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OMG! Thank you Jesus!! For someone, like me, that was diagnosed with MS while pregnant, this is AWESOME!! I could cry right now!! Medical science is amazing!
Hi Laura (and everyone else who suffer from the effects of MS), check out Dr. Terry Wahl's story http://www.terrywahls.org/. She's an internal medicine doctor at the University of Iowa and also Iowa City's VA hospital. She has progressive MS, and was dependent on a wheelchair... but she has done something no one else in the world has been able to do to date, she reversed the effects of MS WITHOUT the use of drugs. She used/uses food and exercise. That's it. She doesn't need her chair anymore, rides her bike, etc... she's AMAZING! Before you dive into the world of drugs that only "help" you deal with the effects and cause other effects... check out her story. She's currently conducting research at the University of Iowa to replicate her results, so it's just a matter of time before word gets out. Dr. Wahls doesn't know me. I don't have anything to gain by encouraging people to check her out, but if you have MS, you have everything to gain by checking her out.
This is really great news, and i'm happy for any MS sufferers who it will benefit.
Not only that, but medical breakthroughs often are transferable to other conditions, so it may help people with other diseases as well.
However, and please don't think that i'm trying to take away from your joy, Jesus really had nothing to do with it.
The fantastic doctors and other scientists deserve all the praise.
You are soooo right about medical science being amazing!
I just wish that science had not been suppressed for so many centuries by religion fearing that it would contradict biblical teachings (which of course it does).
I would not jump on this drug if I were pregnant. They don't know what it will do the fetus. Also, as a mom with MS, I'm not jumping on this drug until they know more about it. Rebif is working for me even though the shots are no fun and it's been around long enough to know it won't kill me.
I cant believe this, now drug companies can profit off a pill when all thats needed is a stence to clogged veins in the neck.
Tread lightly Laura. There are many dangers that come with this drug. I too have MS.
I think MS is a virus, or recessive gene in the body at birth..certain foods will trigger it, as well as lifestyle..if the scientists would look into the link with lymes disease and MS you might have similiarites...just a guess
Me thinks John doth suffer delusions. Decreased blood flow can indeed do many horrible things to the brain but that is a different illness.
My mom last walked without help on my graduation day, and 6 years later, she is in a nursing home at 44, and she has taken all of these medicines, and she is now on avenex, i welcome anythng that will help .......... we will give it a year and see how it goes
Don't listen to Kelly. You can't cure MS with food and exercise. Take the drugs. They are getting better and better.
Anyone interested in learning more about MS and it's causes, look up Dr. Richard Edlich. He can give you some very useful information about the links between MS and Vitamin D3, among other things. I worked with him writing scientific articles on this issue, and having been diagnosed with the disease for several years and still kicking at 70, i consider him an expert.
Kelly, you are linking to a site that sells stuff. I'd give you some credit if the site offered any useful information up front, but it exists only to sell the doctor's DVDs and classes.
You're welcome.
My sister passed away this year at 48 due to Multiple Sclerosis. She took Avonex and Betaseron for a while. Research has still not found the viral (presumably) cause of the disease. Lets hope this treatment is effective. However, opposition to health reform will ensure that access to this treatment will not be available for many. However, this does not concern those who are Social Darwinists. Cost, as always, will be a greater concern than effectiveness. One can hope for a cure, however if there is a cure that is too expensive, it is worse than no cure at all.
I know!!!!! I just saw this. I hate giving myself a shot everyday. YEAH!!!!!!!!
WOW at Charles Stevens. Some people actually believe in their religion. Maybe next time just stick to celebrating the good news with everyone else and keep "Jesus didn't have anything to do with it." to yourself. Certainly took away from MY joy. This is a blessing, and last time i checked a Doctor/Scientist isn't my Lord and savior. As amazing as medical science is to you (AND to me, as i am an MS patient and am overjoyed by this awesomeness) i'm pretty sure we were blessed with these people who have that sort of knowledge so we could get to this age of medications and treatments. i think Jesus had LOTS to do with it. And if you have time to read biblical writing just to use it to make your sour point, maybe while your at it you could learn to respect it a little more for the people who believe in it.
Real classy there Charles, this is not your forum for debating religion. People like you are just as bad as the evangelicals, both of you want to force people to believe what you tell them. You are truly trash.
Well Laura, being 4th in my family to be diagnosed with RRMS, trust me, I understand. HOWEVER, per WebMD "possible heart, lung, and eye toxicity " so I'm not gleeful at this point. I'll try the Liberation Treatment myself.
Good luck to you btw.
@Kelly,
I actually agree with you. I have had MS for 6 years now. I changed my diet and exercise regiment two years ago. And I feel really good and haven't suffered any MS symptoms. There are literatures out there that explains why this makes sense. However, do realize that people have different symptons and reactions with MS. I chose one that works for me.
Hi, Laura. A little unsolicited advice from an old lady who was diagnised in 1975. MS is an unpredictable, frustrating disease but it is a disease, not your whole life.. Do your best to maintain a healthy lifestyle, bring your religious faith into use to cope with stress, find a physician who will partner with you to make informed decisions about treatment and be patient enough to accomodate the various symptoms of the disease. If you feel like doing it, do it. If you are too tired rest and see what tomorrow brings. One of the greatest benefits of he disease was learning at 35 years old to live in the present. Most people do not learn that until much later in life. I have been so blessed with good medical care, a supportive family, a faithful God, a supportive Christian fellowship, and a ribald sense of humor that has allowed me to laugh at myself. You're going to be fine.
More and more evidence is coming up that Multiple Sclerosi is an autoimmune disease or a transverse section of autoimmune diseases. We wrote this post on the subject http://bit.ly/a9Gvjk. I hope you and your readers can benefit by it.
it has been known for years MS is an autoimmuse disease. how can you honestly believe that a simple diet change will 'cure' MS? don't you think doctors and scientists would have figured that out by now? what about people who eat 'correctly' who still get MS? this is bunk and its sad that people are so easily lead to believe such things outright.
Unfortunately there are a large number of people misdiagnosed with MS when what they have is a simple dietary problem. A member of my family was such a person and when she eventually changed her diet the symptoms when away. A cousin also has an MS diagnosis but the same diet almost killed him. This is why we need to find the actual cause. Until we know the cause we can't be certain of a valid diagnosis.
I was just diagnosed in june of this year and i hate the nightly injections. However, after reading these side effects i think i will stick to the needle until this has less scary side effects. Yes the needle hurts but atleast i have full lung function and heart function 🙂
I'm with you, sister. 21 years since diagnosis and still standing (Thank You, Lord!), and Copaxone every day now. I like the pill idea, but the side effects are daunting. I figure, if one hits the market then more will follow, but for now I might just stay with the devil I know. Stay well, Kara, and God Bless you.
I was diagnosed in 1990,been on Avonex since about 1995,I've been i n remission ever since I started that drug.I'll put up with the IM injections and side effects till this new drug has proved itself to be safe and effective.
Hi Kara,
My husband was diagnosed 2 1/2 hrs ago and has been on Copaxone, doesn't miss a shot and takes some heavy doses of vitamin D, although his onset was optic neuritis.... we are blessed that medication and lifestyle are helping and specialist is happy with his progress, he's doing well and thank god he can continue doing all the things he loves to do! I think if your meds are working well for you, no need to change unless they stop working. The side effects are definitely scary!!!... All my best wishes to you!!!! There will be progress with our science and finally we can all get an answer for the reason and maybe just maybe a potential cure!!! or at least a way to STOP it from progressing....
I too am a MS patient. I take Copaxone and I hate the daily injections. I discussed this drug with my Neurologist and he had the same opinion as I; this is a new drug that comes with dangerous side effects. As he pointed out, the FDA has approved numerous drugs that have ended in recall. Phen Fen(sp?) is one that comes to mind. As he said and I believe, I will be more than happy to wait and see. I know the drug I take is working as I went from 55 lesions to 1 in 9 months. I do not know if this new MS drug will cause cancer in me later on in life and I do not care to find out. The shots are annoying, but they are safe and effective. In my opinion, this drug should be a drug for those that have one of the two forms of MS that paralyzes and kills. For people like me with RRMS or PRMS, this drug is too dangerous. I won't be taking it.
Kara, I think this is a wise decision. I have been on Copaxone for 9 yrs; it works well for me and I have learned to live with the shots.
I was diagnosed in march and am also on copaxone and as annoying as the shots are I haven't had an episode since April I'll stick with the shots for now
I agree with you and the other posters, I'll stick with Copaxone until I hear more about how the pill is doing. Maybe next year. It would be nice to stop taking daily shots, but it's been working for me since my diagnosis in 2001.
Kara, I was on Copaxone, too, because I didn't want to use a bigger needle. I did change to Avonex, and the doctor orders smaller needles, so it is not a problem, and once a week is MUCH better than the every-day-stick (and the lumps Copaxone leaves).
I totally agree on continuing my daily injections of Copaxone. They have served me well for the over 10 years I've been on them. Giving me not only the abiity to do what I need to do, but to do the things I want to do. I am comfortable with the known side effects for me, there have been none.
I'm very concerned about the long term effects of the "new" meds, especially the oral one that is out now. No long term reports to show what can happen 10 years down the road.
If it's not broke, don't try to fix it.
Cindi
Kara, Your comment brought a smile to my face. Full lung and heart function sounds great! I can't stop thinking, if it's not broken, why fix it? You're doing great. These drugs will improve while you stay with you healthy lungs and heart. They will be ready for you, when you need them. I wish I could take the stick of the needle for you.
Dude. MS has always been an auto immune disease.
@kara, I have been on the new med for three years as part of the clinical trials and have had almost no side effects (had horrible side effects on shots). Take a closer look at the actual data on side effects for Gilenya. The heart issues happened at first dose (my heart rate decreased but was fine by day two, and they monitor patients for at least six hours with first dose for this reason - just felt woozy). Also, all serious adverse reactions were on the higher dose. Luckily the lower dose proved just as effective and that is the dose that will now be on the market. my only concern is the long term side effects are unknown. If avonex is keeping you in remission then by all means wait and see. If not, you might want to talk to your neuro.
My wife was diagnosed 15 yrs ago. She takes Avonex shots once a week. It took 2 years for it to start working and she still gets the flu symptoms every so often after the shots. The drug has proven to be a blessing to her for a long time but alas, she is starting to go the other way. I will welcome the trial of any new treatment that may help her and add value to her life style and her suffering.
hi kara i was to dx with ms in aug im on avonex and i have no side effect yet i eat heathly and excersie and just know god will find a cure or something just to stop it where it is in your body and just get on with life with no pains. i'm going to stick with the shot too for now and if one day i have to switch or try the pill i'm going for it love april
Why hasn't CNN ever reported, or even mentioned in passing, the "Liberation Therapy" which has shown to help people all over the world? It's new and revoluntionary and is still approached with some caution. I don't think the big drug companies will like it at all. http://www.medindia.net/news/Italian-Doctor-Takes-His-Campaign-For-Neck-Vein-Surgery-For-MS-To-Canada-70154-1.htm
I have read about this before and many docs halted all studies due to patient deaths. I'll pass.
Big pharma does NOT want patients to look into the Italian doc's treatment. I have a relative who has studied this extensively because their spouse has MS and is in very bad shape. The reason you can't get this treatment in the states is due to the pharma co's – there are no drugs involved in this treatment and the druggies will lose millions if not billions if this treatment proves out (neurologist's laugh off the treatment). There is big money to be had with MS and the docs will do their best to convince everyone that Dr. Zamboni is a quack. There are a couple places now in the US that are working on setting up clinical trials. It never hurts to research something new Ashley – look a little further into this – doesn't mean you have to try it. This procedure is being used in many other parts of the world with a lot of success – those countries abviously are not in the pockets of pharmaceutical co's. The more you study it, the more sense it makes. Good luck to you all!
Good friend of mine had the angioplasty and is seeing Very positive results already in just a week. But why try for a cure when there is more money to be made in forcing people to pay for daily medication??
My point exactly, Tony! I can't figure out how they (the docs and big pharma) can sleep at night with so many people suffering, and I mean suffering beyond belief, possibly unnecessarily. The media here in the states needs to start reporting on this procedure.
There were way too many problems with the research so far on chronic cerebrospinal venous insufficiency. CNN is right in not jumping on this one until PROPER research proves that there are benefits.
There have been deaths associated with this method of treatment. Maybe this is why it is not really talked about much here in the states. I think I will stick with the daily injections rather than risk dying. Just my opinion.
Its because the original research wasn't conducted with the strict controls that all scientific research should be conducted with...CNN isn't going to report on something that, at least right now, is nothing more than a theory supported by a few circumstantial data points...And the reason is twofold: Reputation (CNN's) and the irresponsibility of giving sufferers of this disease false hope.
I am still waiting for CNN and Dr. Gupta to do a report on the Liberation Treatment for CCSVI for MS patients. This treatment is very safe – its angioplasty and its being done on thousands of patients worldwide who report improvements of varying degrees. Why the silence from all major US news organizations? This is a major treatment breakthrough which should be properly investigated by CNN and others but we get news about the treatment, clinical trials and other relevant news from our Canadian friends who are updated daily by their news organizations. Shame on you CCN.
Are you saying there aren't fatalities with the medications? My in-law was on one of the meds, can't remember which one, that is responsible for numerous deaths. The medical geniuses figured out, too late for many, that this particular treatment can cause a fatal brain infection after 30 or so treatments. Needless to say, the med was stopped for my in-law. And, since when does death from a treatment prevent articles/commercials/media from reporting on it? If that was the case, we wouldn't be inundated with ads for new medications (like Gilenya). I'm not one to go the conspiracy theory route (usually), but in this case I'm leaning that way. Pharmaceuticals and insurance companies, and their loyal lobbyists, do pull the strings with doctors and hospitals (especially university hospitals) in this country and if they don't want a treatment out there that won't benefit them, guess what, you as a consumer cannot make the decision to get that treatment. Look a little further into this treatment, angioplasty is a whole heck of a lot safer than most of the drugs used for MS. Besides, since when does a media outlet vet anything before they publish it?! They don't have to endorse the procedure, just publish it so people can make their own decisions.
it's not a "neck vein" it's a "neck artery". there is a difference....... and surgery on your neck arteries (or veins for that matter)
have extraordinary risks involved.
If you want to convince me then do a study where you show that 80% to 100% of all MS sufferers have thickening of the arteries leading to the brain. If this is true then instead of dangerous surgery you can simply maintain a healthy cholesterol level. After all, artery clogging is caused by bad cholesterol levels isn't it?
Why Because BIG PHARMA is all about money and disease containment NOT NEVER a cure It is a money game for them http://www.greenloop360.blogspot.com/
The condition CCSVI is helping is not clogged arteries, it's more like a kink in the artery that needs to be straightened out. The "kink" is usually in the neck or chest area and prevents blood flow throughout the body so the blood backs up and goes back to the brain which, they believe, is the cause of the lesions on the brain that are found in MS patients. The procedure is not traditional surgery but angioplasty on the artery, which is a procedure that is done on millions of people all the time. Of course there are dangers associated with this procedure, as there is with any medical procedure. If you are living with the worst effects of MS, such as not being able to walk, control your limbs, take care of yourself, extreme constant dizziness, and on and on, it may be worth it to try the procedure with a doctor that knows the protocol and understands the treatment.
Although a break through in the MS field, I am cautious to run out and get a script for it. My neuro told me that during trials on a higher dosage there were multiple deaths from infections and they halted all trials for a short time then started them again at a lower dosage which appeared to be much better but there is still the risk of infections. I currently take nothing. I have a hard time convincing myself to take meds that have side effects worse than my disease or to be a lab rat.
What drug has side effects worse than what you are experiencing now? I don't understand people who choose not to help themselves because they don't want to be "lab rats". If you had diabetes would you skip the insulin shots? MS is serious, and without treatment you could wind up in a wheelchair or bedridden. I hope your Dr. has expressed this to you.
I'm with you Ashley. I have had MS for 20 years and have not done the injections. My neurologist was quite persistant about it some years back. I told her the exact same thing you stated – why inject something in my body that is going to make me feel worse then I already do. Good luck to you with whatever path you choose. Hopefully one day they will have the cure they have been talking about for the past 10 plus years.
Bridgette, any drug that may cause cancer or death, in my opinion is not worth the risks to me. I will be more than happy to let others be the "lab rats" if they choose, in exchange for the drug I am currently taking for MS. I find your comment and logic both puerile and absurd. Death or Cancer are indeed far worse than pain, fatigue and other ailments both physical and mental associated with this disease, that I have.
Ashley, there were two deaths on the higher dose, both from the herpes virus. Both people did not disclose their drug trials to the facilities they were treated at. I am currently on Gilenya and have been for 3 years. The higher dose I did expereince some of the side effects, increased BP and decreased HR but on the lower dose, I am back to my baseline HR and BP. FTY-720 is the what the trial was called if you want to look it up.
Ashley – the MS medicine is the ounce of prevention becuase there is no pound of cure. it doesn't make you feel better today; it keeps you upright & functional next month, next year, next decade.
NOT taking the medicine is equivalent to starting smoking. It may not affect you much today, but it will catch up with you.
If you have insurance, there's no excuse for not taking the medicine.
hdgoell--What drug causes cancer and death? I would not put that in my body either. None of the drugs that my husband (who has MS) has taken have either of these side effects. He was on Rebif for 3 years, and just start Copaxone. Responding very well to Copaxone...with no risk of death.
Ashley-Different drugs are different for everyone. My husband was on Rebif for 3 years, and just came off of it. He took the shots at night with an asprin, and slept through any bad side effects. There were some nights that he had trouble, but most nights he felt great. That's the fun thing about MS...you feel fine for a long time, and then it hits you.
I totally agree Ashley. I was officially diagnosed over 8 years ago at the age of 23. I have periodically used Betaseron, but could not tolerate the site reactions. I have had no relapses and am currently fully ambulatory and have no issues besides an intolerance to heat and some occasional mild fatigue. I refuse to take drugs and suffer worse side effects from the drugs, than what I currently experience from my disease. I also refuse to become a pin cushion. I will wait and see what results the CCSVI research produces before I go on any of the current MS drugs. The side effects are not worth the small potential reduction in relapses IMO.
The multiple deaths were two on the higher dosage, and may not have been related to the medication. The Wall Street Journal reported today "The drug carries the small risk of side effects (including herpes infections and some forms of cancer) and Novartis agreed to monitor patients for side effects as a condition of approval — but not as extensively as expected." The cancer was skin cancer in the tests, and all instances were successfully removed without further effects.
There were two or three deaths, and now the docs test patients for the levels of antibodies they a have to the virus that was the culprit in these deaths before putting someone on the med. No such issues happened on the lower dose, which is what was approved.
These drugs are rediculous. I wouldn't trust these drugs as far as I could throw them. One day they will actually start treating the CAUSE of MS by getting the mercury out of your brain and body and fighting the systemic candida and leaky gut at the same time. In the meantime they will keep giving you a yearly flu shot with 25 mcg of mercury, an incredible neurotoxin, and then wonder why you are relapsing. Neurologists are the most clueless of them all. I used to have MS too. USED TO!
RE: "these drugs are ridiculous": It should be noted that these "ridiculous" drugs have made it possible for patients with MS to have a shot at a normal/near normal life. They alter the typical course of the disease (thus the title "disease modifying agents"). I don't think any MS patient is under the illusion that any drug currently approved (Gilenya inclusive) is without side effects. The idea is to reduce the cumulative disability of this disease until a cure is found. I have had MS for 14 years and I do not receive money of any kind from pharma companies. I exercise, eat well, and take my MS meds as prescribed. That is not to say I don't have lots of daily symptoms, because I do. But the fact of the matter is the MS drugs out there now make the management of my disease a little easier.
Caroline
http://www.msnewstoday.com
Well smarty pants, why dont you tell the world how you got rid of your MS? Did it involve a witch doctor and a jar of pickles?
mercury does not cause MS lol
MS is an autoimmune disease that may likely be triggered by a virus that does something called molecular mimicry. Molecular mimicry of viruses makes them look like your own tissue to your immune system. After getting the virus, GENETICALLY SUSCEPTIBLE people may have an immune system that can't tell the difference between spinal cord tissue and the virus antigen.
Go get a real education and stop spreading false information.
This one was obviously trolling for comments. MS is incurable, and always will be, right up to the point where someone figures out exactly how to achieve 100% remyelination. Until then, we're just not there.
I'm guessing you also believe there is a link between autism and mercury in vaccines as well?
WOW!!! "someone" has found the root cause of MS!!! I had no idea they had found the root cause. This makes sense, especially to someone like me, that has never eaten any sea creature or played with thermostat controls. Oh wait, this is your "opinion" and not based on scientific research properly done. Looks like I will be sticking to the vitamin D3 deffiency theory and continue taking my injections, DHA and D3 supplements. What if people don't have insurance because it is not offered or they can't afford it? You're right, screw them, they deserve what they get.
flu shots have not made thimeserol sulfate (mercury) in them in 20 years.
I have MS and I just had my blood tested for heavy metals and did not show any mercury in my blood. Please tell me more about the info you presented on what you claim to be the causes and what you did to cure your MS. Did you have another spinal tap and MRI's to show you no longer have MS? I am sincerely interested in your story.
Check out Dr. Terry Wahl's story http://www.terrywahls.org/. She's an internal medicine doctor at the University of Iowa and also Iowa City's VA hospital. She has progressive MS, and was dependent on a wheelchair... but she has done something no one else in the world has been able to do to date, she reversed the effects of MS WITHOUT the use of drugs. She used/uses food and exercise. That's it. She doesn't need her chair anymore, rides her bike, etc... she's AMAZING! Before you dive into the world of drugs that only "help" you deal with the effects and cause other effects... check out her story. She's currently conducting research at the University of Iowa to replicate her results, so it's just a matter of time before word gets out. Dr. Wahls doesn't know me. I don't have anything to gain by encouraging people to check her out, but if you have MS, you have everything to gain by checking her out.
to add creditibility to the above statement, here's a spotlight from the University of Iowa (a big ten university, and with a ranking research hopsital) on Dr. Wahls: http://www.uiowa.edu/be-remarkable/portfolio/people/wahls-t.html
one more link for y'all! http://www.mindingmymitochondria.com/
a wonderful way to get yourself killed.
I hope if someone has MS and listens to your ignorant statements and unproven testimonials, and they end up in serious condition, they find out who you are and sue you.
there is no diet treatment for MS. plain and simple. It is an autoimmune disease. The disease can go into remission on its own, it is only coincidence if someone changes their diet and it affects it. There is 0 empirical evidence for your claim, testimonial evidence is garbage.
stop spreading false information, you are a sick and despicable person that could lead to someone taking your "advice" seriously and getting killed for it.
Kelly... are you seriously delusional, uninformed or HIGH? Do you have MS? This is dangerous information you are spreading. I reccomend to anyone with MS, like ME, the following.... DO NOT LISTEN OR BELIEVE THIS AT ALL. The Nucleus of the MS population is in the NW United States or the far NE. In both cases above the 40th parallel. If you want the best and most leading research and treatment for this disease, move to Seattle or Boston and get a great NEUROLOGIST that specializes and is doing research in MS. Dr. Eugene May in Seattle si excellent.
It is truly sad that Dr. Wahl can't tell the difference between a simple food intolerance or bad diet/high cholesterol and real MS. As modern science has determined, there can be many causes for any given set of symptoms. Promoting anything as a cure all is silly and dangerous. Some people with MS symptoms may be helped by diet and exercise but that just means they didn't really have MS. As long as a competent medical professional works with them it may not hurt to make these changes in lifestyle but don't expect miracles.
"a big ten university"...... a big ten university has everything to do with college sports (mainly football) and nothing to do with the quality of the academic program. i'm not saying it's a bad school but that's what "big ten university" means. sports..
Once one has met the diagnositic criteria for Multiple Sclerosis, it is a life-long diagnosis. While a very small percentage of people have benign disease, it cannot just "go away", even with treatment. Gilenya may be a promising step in treating the disease, but will not be the majic treatment for everyone. It is important to discuss this, and your disease issues with a MS Neurologist.
I'm excited and nervous all at the same time. I hate the weekly IM injections, but welcome an oral medication. I don't think I'd try it until it's been out on the market for a few years.
I'm with you Deb. I dread the friday night shot and would love to take an oral med. But I feel there is still too much unknown about it and I'm afraid I may forget to take it everyday. As much as I dread the shot and procrastinate taking it on Friday nights, I don't forget it.
I wish I could do the weekly injections, but the 2 day fever, chills and migraines were too much. With each week that passed I had more debilitating side effects. I now take Copaxone daily and it has been good for me. If I get proper rest, meals, exercise, and reduce the stress my symptoms decrease. Like others have said, I'll stick with the known for now.
What is "eye toxicity"? I work with a dr. and just asked him – he said he'd never heard of that one, but assumes that means your eye becomes infected and will eventually die.
You are what you eat and put into your body. Get a nutritionist and get serious. Don't add chemicals!!!
jess...you can't "cure MS with a diet"..get an education before you hurt someone.
A doctor of poetry is hardly a good source for medical advice. What kind of doctor was this exactly?
there is no such thing as a "nutritionist" in most states of the US. a nutritionist is someone with $20 who goes to office depot/office etc and buys business cards that says they are a "nutritionist" ......a "dietitian", however, is someone with a four year college degree......
For all MS patients....New research linking Vit. D deficiency to onset of MS...Please research for yourselves:
http://www.shineonscotland.org.uk/news/2010/07/multiple-sclerosis-and-vitamin-d-a-review-and-recommendations/
My doctor and nuerologist just told me this. I was tested and showed my level at 25. Normal is 30 to 100 with 50 to 75 being optimal. So I was put on mega doses to get me back to normal and then will level out to maintenance. Yes, I highly recommend getting your vitamin D3 levels checked. From what I hear many are getting relief from this simple therapy.
New research means not yet validated and thus unreliable. If vitamin D solves the problem then just get more direct sunlight. No need for any treatment at all. Let us know how that works for you. If you die be sure to report that back to us too.
I have a cousin with MS that uses Cannabis with very good results. It very much helps her spasms, balance, pain, and depression. Seriously, check it out. She takes this medicine in cookie form, and she doesn't even feel like she gets high, because you don't need high doses for therapy.
Medical marijuana does help with pain, and is wonderful at doing it..but it is not going to stop people from relapsing.
Eating pot may indeed help with many of the symptoms but it is known to cause a variety of other problems. New research to extract the beneficial parts and leave the deadly parts behind is showing some promise but has a long way to go.
kraznador: "extract the beneficial parts and leave the deadly parts " What?? really?? really?? marijuana has no "deadly parts" no one has ever died from a marijuana overdose.
lets just legalize weed, save us all alot of pain and money.
Kelly- Do you have MS? I am so happy for Dr. Wahl ,please do not encourage people with MS to go off of their medication. Most people know with MS that living a healthy life style will help reduce MS symptoms. These medications slow down the progression of this diease and I am pretty sure fruits and veggies will not do that since I do eat a very healthy diet and I still had new lesions unitl I started on a MS treatment.
Wonderful news
Check out Minding My Mitochondria 2nd Ed (available on Amazon). It has the intensive nutrition protocol which I developed and used to reverse my MS and get out of my wheelchair after being dependent upon a tilt recline wheelchair for four years. I now bicycle to work and take no disease modifying drugs.
First off, was it an accurate diagnosis? Second, can you guarantee 100% success? Third, what if MS actually is a blanket set of symptoms with several different, unrelated causes? Fourth, I would credit this more if this was a peer reviewed study and not just some book written by someone who may have gotten better miraculously in a manner that is not duplicatable.
it's entirely possible that this intensive diet protocol has nothing to do with your recovery and there could be other, unknown factors as well. squeeze a snake long enough and what do you get? snake oil.
Wonderful news for everyone who suffers.
How many MS patients were deprived of this drug for I don't know how many years because the FDA keeps drugs off the market for years until it approves them?
What right do they have to condemn a person to prolong suffering (and even death) because the patients cannot choose if he would like to try the new drug as soon as it is available. This is pure Fascism and I can't believe that people don't see this.
Are you serious, there are plenty of other drugs MS suffers can and are taking with great success. I am pretty sure there were no MS suffers who died or had prolong suffering becuase they could not take a pill form of treatment. I am more than happy to wait for the FDA to determine if the drug is safe for use.
Would these people so desperate to try a drug that isn't approved sign a waiver, that if they die from the drug, or suffer some horrible side affect that they can not sue the drug company. Of course they wouldn't sign this waiver. that is why they have to wait.
The FDA is not the one that keeps drugs off the market. It is the drug companies (I work for one). There are certain tests that have to be run on drugs before they can be released to the FDA for review. For example, tests to make sure the drug doesn't cause cancer can't happen overnight. Carcoginicity tests take several years.
I would much rather wait 10 years for something to be tested fully than take something that could potentially kill me overnight.
one word. thalidomide.
Amanda,
Good for you that you are willing to wait. And you are always free to do so. But why deny that choice from those others who don't agree with you?
jackybb94,
Then it should be harmless to remove the FDA restrictions keep these drugs off the market. Let the drug company, distributor, pharmacy, deal with any such liability issues with the customer.
What kind of an assumption is that by the way about what people would be willing to sign, and how does justify the FDA's restrictions?
Jim,
Ok, so I'll think about it next time I choose if to try a new drug unapproved by the FDA. I didn't know my body belongs to the FDA, or US government. Apparently it does since it is prohibiting me to do my own risk calculations for my own body.
Also, how do you measure that "benefit" of occasionally preventing a harmful drug against the costs of delaying and preventing perfectly good drugs from reaching the market on time?
I am on a clinical trial for Gilena, abnd one of the few people who actually use the medication now. Before people reach conclusions about "scary" side effects they should study the published studies on FTR-720 (the code name for Fingolimod, the medication) and discuss these with a competent neurologist. They are very rare, mostly minor, and generally controllable with appropriate checking via pulmonary function tests, sophisticated eye exams and dermatology checks. The cardiac effects are nominal after the first does which is closely monitored. The medication has less side effects than many injectables, and one test showed great efficacy than one interferon therapy. Some of the competing drug companies are publishing "caution" notices about the new oral therapy, which of course raises economic issues. I am not advocating Gilenya, but rather saying that people should not over-react to such of negative issues but rather study the technical data and consult with highly competent medical professionals.
The way I understand it, all anomalies in the patient's health during the drug trial, whether or not they can be directly attributed to the drug itself, have to be reported as a "side effect". That does not mean that they are. I will admit that I did get one of the more dramatic side effects during my time on one of the newer MS drugs; this ceased as soon as I switched to another. I've been pretty much symptom free for almost two years now. With medication. Wouldn't chance life without it. I Remember what it was like when I wasn't taking the meds – I want to live my life, not just exist and be a burden to my family. I've had MS for 19 years now – tried a few different meds for one reason or another, but am doing well on Betaseron now. I don't mind the shots – especially when my dear husband is usually the shooter –
michael- can you tell me the MSP cost of this new tharepy?
if you participate in a clinical trial, there's no cost –but you have the "honor" of being a human guinea pig and spending a lot of time in a lot of tests. I hear the medication will cost as much as injectables or somewhat more, which is very expensive. The real question is what the health insurance companies will do, like for any new drug.
It's about time, Jerry Lewis!
Wrong disease...
Is that supposed to be a joke? Or are you just stupid?
Dr. Wahls site is a money making site. People need to realize that if 1000 people with MS went on a healthy diet and two people start to get better its the law of averages. Certain people try and take advantage of this and say "it's my new diet" maybe it is for you but the marjority of us need the medication. It's amazing how these people want everyone to just go off there meds and do they take any responsibility when patients suffer severe episodes. No, they look for the one out of a thousand that got healthier while they were eating twigs and berries and post a "TESTIMONIAL " on their website all to sell a product. Take the medicine and eat healthy . Kelly stop selling yourself.
Excuse me ADD5, but the FDA keeps drugs off the market until they are convinced that they won't KILL YOU or MAKE YOU WORSE. The drug companies would be happy to feed you something right off the drawing board whether or not it's safe or effective because they only care about making money. I'm not saying the FDA is the most efficient organization in the world, but it takes a lot of testing over long terms to properly evaluate any drug. If you want it sooner and you're case is bad, there are loads of clinical trials out there you can try to get into, but there are big risks with untested drugs. The average person expects miracles from medicine, and they doesn't understand the reality. I'm constantly amazed by these libertarian-types who think that greedy corporations are actually looking out for their best interest, and regulatory agencies are somehow evil or unnecessary. I've got news for you, without the FDA, USDA, etc., every food and drug you buy would be made with the cheapest, most dangerous ingedients possible to maximize profits for the company that sells them – just like the US in the past, and China now.
With all do respect, I think that I, owner of my body, should be able to decide on how much risk I would like to take. Not you, or some government agency.
Besides, it's very "clever' to just concentrate on the perceived benefits, but to totally avoid the costs; Do you have some special knowledge regarding the amount of suffering and number of deaths that occur annually as a result of drugs being delayed or prevented altogether from entering the market due to the FDA, and which allows you to then weigh the potential benefits against those costs? I didn't think so!
As for the China-America comparison, are you suggesting that the Chinese government which has a much much tighter grip on its economy produces less quality drugs (or anything) due to less regulations? Does that even makes sense? Did the fact that the Chinese can't afford the same quality ever come across as a more logical explanation for any discrepancy? Unbelievable!
I have MS and take only God's medicine.
Ah yes, God's medicine: God's gift of wisdom to the researchers who discovered the interferon drugs. Way to go, Rev! Yayy, God!
Having been given the news some years ago, I've learned that your health is in your hands, and it starts with the attitude that one adopts after the new is delivered. You can feel sorry for yourself or you can educate yourself about whats ahead for people with MS. My belief is that the drugs give you a stable base from which to adopt a healthier lifestyle by which you will experience a reduction in Flareups or relapses. Oh for folks who prefer the pill more power to you, my 3 weekly injections are a constant reminder of the seriousness of MS, it's also motivation to live a healthier lifestyle because after all I live with a chronic disease for which there is no known cure.
MS patients all have CCSVI...check out the liberation treatment. It's a cure for MS, though it may not reverse all previous damage.
Bill –
Not all MS patients have CCSVI. That was the purpose of the study...to determine whether or not CCSVI is a / the contributing factor to MS. In the study only a minimal percentage of MS patients had CCSVI. Please check your info. I was diagnosed 2 years ago and my mother had progressive MS (she passed 15 years ago). I have had tests done (repeatedly) to determine whether or not I had signs of CCSVI and all vascular tests were normal. I have spoken to a geneticist who informed me that my daughters chances of having MS are now 10% higher due to the genetic line (from my mom to me). CCSVI is not always a factor.
I currently take Copaxone, Neurontin, and Prednisone. As much as I would love to get rid of the needle...congenital heart failure and heart disease is a factor in my family and this oral med is not an option (per my neurologist). All you have to do is ask.
My best to those that can take this and it works without any suffering.
My next step is looking into Stem Cell Therapy. Any success cases? Feedback (good or bad)??
The best to all of you
no they don't. that is silly/stupid/foolish. you can't say "all" MS patients...... that's like saying all sickle cell patients are black. (not the case) i have a chol of 132, trigly of 58, calcium score of zero, clear cardiac/neck CT and have MS.
if you want an "all" argument to use say this "all patients with prostate cancer are male". there you are. say that.....
You mean I'm possibly down taking shots! Whoot Whoot!!
DONE I meant
I've had MS since Aug 09 and have been very fortunate over the last 11 yrs. Eventhough I may have some complications I can still live a pretty normal life and have function of all body parts which is a true blessing. I'm going on year 5 of Tysabri and have been very happy with the treatment. I believe everyone should wait at least 1-2 yrs before trying the new oral medication.
I'm excited that we can make some progress on this after it's been so long.
I read the headline and I swear I had a grin from ear to ear. I don't have MS and don't know anyone that does but I know that this will help ALOT of people that do have it and that is a very very good thing. I am very happy for you all that has MS!
I share that grin with you!!!! I hate those injections!!!
"What drug has side effects worse than what you are experiencing now? I don't understand people who choose not to help themselves because they don't want to be "lab rats". If you had diabetes would you skip the insulin shots? MS is serious, and without treatment you could wind up in a wheelchair or bedridden. I hope your Dr. has expressed this to you."
Bridgette – I took Rebif for a year and absolutely hated it. I felt like I had the flu 24/7. I have been in remission for close to 4 years now and haven't taken any meds in over 2 1/2 years and feel just fine. If I relapse I will look at meds again but untill that happens I'm not going to mess with a good thing. My neuro supports my decision and is a specialist.
I'm the same way. I was on Rebif for several months, and all it did was make me feel sick and make my symptoms worse. I've been off it since Feb and I feel 10 times better. So although I am excited for the first oral drug being released, I'm extremely hesitant about using it. All things considered, my symptoms are tolerable right now. So why tempt fate?
ReBif is a dangerous drug. reBif should only be precribed after a psychiatrist has approved it as it willl wreak havoc on your brain. If anyone has ever been diagnosed without a psych screening, congratulations, your doctor, like the first on e I had and fired, has just broken the makers of ReBif own protocol for presribing. I took it and within 9 weeks went from being happy and active, to crying uncontrollably and finallly ended up with a loaded gun in my mouth. Thank god the FedEx lady knocked on my door. Thank god I called the ReBif nurses line and found out that I should have never been presribed their drug, especially since my mother had just died and I was clearly stressed and depressed. This came from the makers of ReVif, not a competitor. My new neurologist put me on Copaxone, and voila, no more mental side effects from the drug. No more crying, no more suicide attempts. I also went from 55 lesions to 1 in 9 months. I am just one person, but I would tell others that maybe they should talk to a second neuro or get another opinion.
hdgoell--As I've stated a few times, my husband was on Rebif for 3 years. Never did he have a psych screening. I don't find any literature that backs this up. I do know that depression, suicidal thoughts, and other pysch issues are considered side effects though.
I was diagnosed in '87, before the
I have relapsing/recurring MS and was diagnosed approximately 12 years ago. I took Avonex shots for years, but have been off them for about 3 years. Luckly I am doing great and have no new leasions. My neurologist is happy with my condition at this time. I agree with some of the posts here about trying these off the wall treatments!! No diet is going to cure my MS!! I am glad I only have the relapsing type of MS, which my doc said is the best kind (if there is a best kind of MS!) I am glad medication is working for all the others who have commented on here. There are many choices in drug theapy for MS and you just have to find the one that works best for you. Like others here have said, I don't think I am going to rush to take this new pill – although I would love to take a pill and not have to have a weekly shot! I am willing to wait to see how this new drug works out after a few years. I just hope I stay as healthy as I am now and don't have a flair up!
My mother was diagnosed 12 years ago with MS and her life has been horrible ever since. She has unbelievable pain, shots are not working and just two days ago found out that the MS has spread to her brain. She has tried all the shots, modified diet, herbal this, and everything else that! Her quality of life is terrible. I'm not quick to jump on the new drug band wagon but it sure would be nice to have something that helped. It's so heart breaking to watch her life end that way it is.
I feel for your mom and her pain, but what exactly does "MS spread to her brain" mean? It's not cancer. Do you mean she only had lesions on her spine before, and now they are showing in the brain? This is fairly common...
My sister has had MS for seven years (formally diagnosed) and tried Avonex and it was horrible for her. She now takes Capaxon and has had positive results for over two years. Each year her symptoms do get a little worse, but that is expected, I guess. She still walks, drives, and lives a more active life than we could have imagined 7 years ago. Hopefully, this new pill will get the kinks worked out and be successful for others in the future! If you take Rebif or Avonex and are having a horrible time, maybe discuss the Capaxon with your doctor.
My mom was diagnosed with MS in June of 2001. I will never forget the day. She has been mostly paralyzed since about 2004 and needs assistance bathing and using the restroom. She was getting shots 3 times a week which resulting in a skin infection on her leg and she had to be taken to the hospital in December 2008. The good thing which came from that is that she healed but also quit smoking cold turkey as her motivation was to survive and it was becoming a nescience to go outside to smoke. Since, she has been going to the doctor for infusions. Currently she is not on medication (below).
I am so happy that this new oral tablet is available for MS patients. It is another step in the right direction. I would like to share a recent MS story my family and I have been enduring the past 3 months:
On June 9, 2010 she was rushed by ambulance to the ER and submitted to the ICU for cardiac arrest, seizures, respiratory failure, and other complications from MS. The outlook was bleak. After being in the ICU (and having surgery to relieve pressure of spinal fluid on her brain) from 6/9-7/13, she was released from the hospital into a rehab center on the hospital campus where she remained until 8/5. On 8/5 she was moved to a nursing home. The hardest to take were the nurses asking if I was her grandson and if my stepdad was her son.
On 9/13, she was sent back home. She can carry conversations but tends to forget and has been counting down incessantly. While she isn't back to the mom we have always looked up to, she is still our mom and we will always look up to her. She is only 51.
I will never take life for granted. God Bless everyone with MS.
"cardiac arrest, seizures, respiratory failure, and other complications from MS" that's an interesting combination of complications. seeing as how cardiac arrrest is just really another term for "cardiopulmonary arrest-heart and breathing stops, and respiratory failure is just before you stop breathing. so technically you cannot be in both cardiac (cardiopulmonary) arrest and resp. failure. i'd love to read the ambulance report of that.....
Give it a rest, "jim". No one cares about your desperate attempts to show off what "knowledge" you have. I think the poster is far more concerned about discussing the experience his mother had with MS than with a precise emergency medical report. Everyone gets the gist of what he's expressing.
GettingMarried – had a very similar situation with my mother-in-law (2nd in a line of 4 females to be dx's with MS). She was completely bedridden, could not be upright, could barely talk, couldn't swallow, couldn't see well. She died after having several seizures. We understand what you've gone through and how hard it is to see the vibrant life slowly crumple before your eyes.
For those with MS, please note that MS this severe is rare. Stay alert to the progress in treatments and be thankful that there are treatments out there which are working to halt progression. My mother-in-law never had that option and the other family members with MS are mindful that they are fortunate.
I was recently diagnosed in May. My doctor gave me lots of literature on the 4 main MS shot therapies. I chose Copaxone because there are no flu like side affects and no "checking" tests needed for things like liver damage. I was nervous about giving myself a shot everyday, but it's really no big deal for me. It's part of my routine now and doesn't hurt hardly at all. I have no side affects; no flushing, no axiety, no flu like symptoms. It's great. The idea of a pill is wonderful. But I would like to wait a while to see more long term studies. Someone else said it, there has been many new wonder drugs approved and then taken off the market after a few years due to long term damage. To the person taking this new pill, I'm glad you're doing so great. Hope it stays that way for you. I also wonder about cost. I have great insurance and don't have to pay anything out of pocket (the company supplying my shots also picks up the co-pay). So how much is this pill? As for the natural theropies. I asked my doctor if there was anything like that out there. He didn't know for sure, but he said it best when he said anytime you eat healthier than you are, and are exercising, it increases your overall health and could never hurt. I'll have to do some research on the web sites in above posts. Autoimmune deceases are very hard to cure. You have to alter your system. And everyones system is a little different. Still no cure for AIDS....Well good luck to everyone.
exsqueeze me, baking powder? AIDS is not an autoimmune disease.
Copaxone – HURRY UP WITH YOUR OWN PILL!!! I get no side-effects from your injections, so bring on the pill! I'll be your guinea pig and no one elses!
I'd be willing to bet my husband would be with you on this. Was on Rebif for 3 years, and they just declared it a 'drug failure' due to 3 relapses in less than a year. They've switched him to Copaxone, and the residual effects from his earlier episodes are all but gone.
HEAR HEAR!!! I can't wait for the second or third year of the Copaxone oral drug release.
I am (cautiously) thrilled. I was diagnosed in January of 2010, after symptoms that seemed to come out of the blue (obviously they did not) I take Copaxone and have to inject myself on a daily basis. Have I mentioned that I hate needles??? However, Copaxone has minimal side effects (in comparison to the present medications offered), so I chose it anyway. What are the side effects of this medication??
I was diagnoised in 1979 and have a brother who was diagnoised a few years later. We both have exhibited different symptons and to different degrees. I know that each drug introduced also has different effect on different patients. I am happy for all who have found help from any form of treatments they have tried.
CAN ANYBODY give me the aprox cost of this new therapy?
Gilenya probably will cost about $30000 a year in the U.S., source: bloomberg dot com story (today)
I do not understand why everyone is arguing about this. I understand it is a sensitive topic, I have had MS for 4 years, and fortunately doing very well. An oral drug is something that my doctor has spoken to me about since I was diagnosed, not that he supports it, but that is how long it has been going on for. Tysabri was the miracle drug when it came out, then it was taken off the shelf because people were dying, then it was put back on. I was on tysabri then people started getting sick so I was taken off. Now I am on avonex (prior to tysabri I was on rebif) and everything is working well for me. My outlook is if you trust your doctor, do what they say. There is no reason to come on here and post negative comments, or misleading treatments, or RIDICULOUS statements that your 'MS has been cured', for all of you that have said that, you are not only idiots, but you are also bad people for even thinking to write something like that. There is no cure, why don't we all direct our anger towards the fact that there is no cure, rather then to each other. Support is something that is very important, and I am happy to have my support from my family, friends and doctors .... I hope everyone else has the support they need as well.
I have a dear friend who is all but confined to a wheelchair because of progressive MS. I would give anything if something could be done to give her back some of her mobility and build back some of her immune system which has been decimated by this disease. Right now, stem cell research is her only hope. Everything else is simply a lame (pardon the pun) attempt at a stall.
Bandgeek, before trying stem cell therapy your friend should seriously look into the Liberation treatment for CCSVI, There have been many reports of progressive patients benefitting the most from this. go to : http://www.thisisms.com or http://www.ccsvi-ms.ning.com to get all the info you will need.
" immune system which has been decimated by this disease" i think you misunderstand the pathophysiology of the disease MS. the immune system is not decimated. far from it. the immune system gets "confused" and loses it's sense of "auto-tolerance" i.e. the ability to distinguish between natural, native, endegenous materials (supposed to be in your body) from
unnatural foreign materials (not supposed to be in your body) and your immune system "attacks" your central nervous system (brain and spinal cord) and optic nerves. that in a nutshell is what MS is. it's the same thing as type 1 diabetes (immune system attacks pancreas) and rheumatoid arthritis (immune system attacks joint cartiledge) and hashimoto's thyroiditis (immune system attacks thyroid gland). so it's not a decimated immune system, it's a decimated central nervous system.
Thank you Coco! I'm newly diagonsed (june 2010) and i'm so sick and tired of people saying if i lost weight or went on a diet i wouldn't have MS anymore. I'm on Copaxone and yes i hate the needle... but it doesn't hurt to bad and i have NO side effects!
I'm with you, Kara, but I am confident I would feel so much better if I lost all this weight and was more regularly active. I've never been, so that makes it very hard to become disciplined to do it.
I also, though, have hypo-thyroid and osteo-arthritis. I'm only 38 with two little kids. I'm too young to have all this and know that a health diet and regular exercise would probably turn my life around. I know I'll never be cured of these, but they would be a ton more tolerable.
Best of luck to you! Hang in there!
Kara...sorry to hear of your diagnosis...I know you hear about the losing weight and eating right... I feel ya...but I can say that when I did lose 40 pounds the symptoms were not anywhere as bad as they were. I was diagnosed 4 years ago, I'm 26 now...but first on set was 8 years ago... I was a heavy girl for my size 5'1 and close to 200lbs... but I had lost about 60lbs before being diagnosed(just to try and be healthy) then after being diagnosed I gained that weight back... symptoms got worse...fatigue was horrible...couldn't stand the heat, etc... but I was determined to get in better shape... lost the weight and now weighing 117 I have to say I do believe that it helps tremendously!!! But I still take my shot everyday(copaxone) love it... and try to maintain a healthy weight. I hope everything works out for you and I wish you well!!!!
I was a firm believer in Copaxone but then I started having shot reactions. They just kept increasing to about three a week. At that point, it was no longer possible not to panic at the onset of a reaction. One even last well after the initial boa constrictor feeling for about 5 days. Sudden, shooting pains in my spine. This is blessed news. Let's hope they come up with a cure soon but until, let's pray this pill will do what it says and the side effects are at a minimum. Oh – and go MN Twins!
Me, are you using the auto-ject with your Copaxone? I used to and experience a bad sight reaction. They are horendous! Severe flushing, chest tightness/pain, fainting, followed by severe all-over muscle tightening and uncontrollable body shakes. This would last for a couple hours. I don't know if I hit a vein and it went straight to my heart or what, but it seemed that immediately after (almost right before the needle was pulled out) the chest pains would start. My first one I thought I was going to die. I scared my husband and he was about to call 911.
I stopped using the auto-ject and just started administering the injections myself. Much easier, less "prick" pain. And no severe sight reactions to date since switching. Just an FYI.
@Dawn, yes, I using the auto injector. I just had to quit altogether because I couldn't get my neuro to prescribe something else. Now, since it's been about 5 years, I no longer have an active prescription and I don't think my Doc would take to kindly to me asking for another. Not since I dared to question his God-like authority.
WOW some people need to get there facts straight about MS drugs. I have had MS (relapsing remitting) for over 16 yrs I have been on Betaseron, Copaxone, Avonex, And am currently taking Tysabri and have been for 4 yrs. It is a drug that comes with possible (PML) and other side effects. Biut I have decided the benefits out weigh the negative side effects. It has given me my life back I am leading a very active lifestyle (runner, soccer player, and a skier) People need to get more correct info from there Neuro. I hope this drug is promising I would do it in a minute but Tysabri is working awesome for myself. Does anyone know the cost of this new pill form? Tysabri is 4500.00 a month for one dose but it is worth it for myself. What these drug companies charge (well thats another rant for another day!!!!!!! Take Care all my fellow MS sufferers!!!!!!!!!!!
My husband considered this as an option, but decided the risks were too much. He's on Copaxone right now and he's doing fine. Good luck on your continued success!
Good for you Tina, I loved my Tysabri! but Avonex is doing well for me as well. I wish they could perfect Tysabri, get rid of the PML so I can get my butt back on it again 😉 Good luck to you
Sounds like a lot of side effects that I would rather not take the risk of experiencing. I was diagnosed Oct 2003. According to my MRIs and overall health, I have been relapse-free for five years. I had my first one since 2005 just this past March – optic neuritis. Doctors are impressed if their patients can go a year without a relapse, so I consider myself pretty lucky. I've been on Copaxone from the start. Extremely tolerable for the young, working Mom, in my opinion. I think I'll stick with my daily injections, just like brushing my teeth every day.
I am also a recent RRMS diagnosis (June 2010) ... I have been on Copaxone since early August and so far it has been wonderful! I rarely feel my symptoms, only in the heat or after excercising or walking far distances, so I think I'll stick with the daily shots ... They really aren't that bad, especially with the auto-injector, and I'm wary of trying anything new until it has been researched a little more.
Hi Gary,
I used the auto-ject for many years. Every once in awhile, a bad sight reaction. They are horendous! Severe flushing, chest tightness/pain, fainting, followed by severe all-over muscle tightening and uncontrollable body shakes. This would last for a couple hours. I don't know if I hit a vein and it went straight to my heart or what, but it seemed that immediately after (almost right before the needle was pulled out) the chest pains would start. My first one I thought I was going to die. I scared my husband and he was about to call 911.
I stopped using the auto-ject and just started administering the injections myself. Much easier, less "prick" pain. And no severe sight reactions to date since switching. Just an FYI.
My mother became ill and paralyzed suddenly in 1989, when I was two years old, and for three years doctors could not identify the cause of her catastrophic attack. In 1992, she was finally diagnosed with chronic progressive MS, the worst form of multiple sclerosis. Since her attack, she never walked again and relied on a catheter for bladder dysfunction. I lived with grandparents from age 3 to 10 and moved back with my mom at age 10. Since then, I served as her caregiver and watched her suffer with three episodes of temporary vision loss, loss of balance, until the home equipment at our house changed to where she needed assistance regularly.
My mother used Betaseron back in 1998, but it didn't help much due to her the severity of her MS. She also used Tysabri up until her death in February 2010. Watching my mother suffer due to this illness dramatically changed my outlook on life. I was fortunate to have her see me graduate from college last May and a few months later, she was gone.
I pray every day for a cure for MS, so that no one has to suffer with the symptoms and daily injections of treatment. Until then, I hope that this oral treatment is a beginning for a newly diagnosed patient. I am happy to see the positive comments from MS patients on the page. MS never took away my mom's hope for a cure. Hope keeps us all moving!
How much does it cost to manufacture? How much do the manufacturers sell it for?
Quoting from the first academic review journal from Pubmed:
The sphingosine-1-phosphate receptor modulator fingolimod (FTY-720), which acts by preventing lymphocyte egress from lymph nodes thus reducing lymphocyte infiltration into the central nervous system (CNS)
The part of this article where the doctor mentions that this drug is not an immunodepressant is directly in conflict with how this drug works. Lymphocyte trafficking out of lymph nodes is how our adaptive immunity functions. 'Mainipulating the immune system in a beneficial way to patients with MS' sounds like a retard version of 'This drug is an immunosupressant'. It's like calling a fat chick 'big boned'. Doesn't change the fact that she's still a fattie.
It also doesn't change the fact that calling you Tim means you're anything but the jackazz you are.