Sometimes it pays to be on drugs

by Michael S. Kaplan, published on 2006/08/06 00:13 -04:00, original URI:

(Nothing technical in this post, sorry!)

I swear that none of what I am about to talk about has been intentional. I am merely a victim of circumstance.

I have been taking Lipitor for a borderline cholesterol level which, when combined with my lack of discipline about diet, made folks in the medical establishment feel like I should perhaps try and be safe rather than sorry.

And I have been taking Copaxone daily for my MS for the last few years, mainly because although I preferred the once-a-week Avonex, I was one of the small number of people who suffered flu-like symptoms, and I was tired of being sick once a week. I used to hate the notion of 'shooting up' daily, but I decided to get over it and just pretend it was like I was actually shooting up something ilicit -- so I could have all the fun of being a drugie without any of the downsides of a life of crime and poverty....

And since August 23rd I have been taking Novantrone, as I have mentioned in this blog before. And so far the Echocardiograsm is still looking good. So, Bob willing I'll be on it for a couple more years.

Now I did not stop taking Copaxone during the time I have been taking Novantrone. I talked about it with my neurologist and at first she pointed out that if I was not tolerating the Novantrone that I'd just be back on the Copaxone anyway. And later I just never got around to stopping it, so I didn't.

I also have lots of friends who send me new articles every time they see something on the web about Multiple Sclerosis. It is almost always sensationalistic, mainly because of the combination of the facts that people reporting on these things don't understand them, and even if they did the truth is never as sexy as they need to get people interested. So I usually take what the send with a grain of salt.

But two news items in particular were interesting to me:

Lipitor-Copaxone Combo May Fight MS -- despite its upbeat nature and the fact that the positive results are with the animal model for MS, Experimental Autoimmune Encephalomyelitis (EAE) -- since MS cannot itself occur in mice -- and many EAE cures do not actually help with MS, it may well be good news.

Drug combo fuels hope for multiple sclerosis -- the positive results in this three-year open label Copaxone/Novantrone combination therapy are fairly exciting (and I look forward to the article that should be in the upcoming issue of Neurology), though once again one has to be careful to look too positively at popular news reports.

It seems that I have unintentionally been involved with two interesting combination therapies? :-)

I'll probably talk more about the second one after I read the article in Neurology. It will be years before anybody comes up with anything on the first one, but I'll just suggest no changes in my drug regimen for now....

Travis on 6 Aug 2006 11:46 PM:

Anecdotally, my partner has been on Mitaxantrone (alone) for almost as long as you have, and has had great result as well. Her doctors were fearing a decline into secondary progressive, but she has been almost asymptomatic since beginning the regime.

Anyway, it sounds as if you are going well with the treatment, which is great news. Best of luck.

PetriW on 8 Aug 2006 4:52 AM:

Imho anyone who takes statins for high cholesterol should read this book:

Maybe it'll interest you, maybe it won't but at least it'll give you the ability to ask important questions to the one who is recommending you to take Lipitor. Especially if you only have a slightly elevated cholesterol ratio. :)

Michael S. Kaplan on 8 Aug 2006 10:34 AM:

Well, living la vida lo carb might be catchy, but for now I might stick with it in case it turns out to help with my MS.

No offense, PetriW....

PetriW on 9 Aug 2006 10:07 AM:

I would indeed be great if it does, no offense taken. ;)

Diane J Standiford on 21 Sep 2006 6:10 AM:

I do not think ANY of thee MS drug do a thing for our MS.
Most people who report how grreat they are have onl had DX MS a few years. MY st MRI in 1990 showed a hand-sized plaque which was COMPLETELY GONE on my next MRI 5 years later--no drugs. I was legally blind, unable to walk, etc, most of 1989 and 1990-1991, then II got better, 20/20 vision ever since/NO DRUGS. My Dr wanted me to go on Copaxone and pushed it each year I saw him.
Had I gone on he would have said "SEE how great the drug works!"  MS is a chronic, progressive(in most) disease, and in beginning years it comes and goes. That is why drug companies only say they are for RR, they KNOW you will get better.  The placebo effect carries you on as well. There is NO CURE. NO drug that will make you better. Only steroids help acute exacerbations and Solumedrol is old and cheap, no money to be made there, aspirin helps too.
I see my friends with MS trying all the new drugs and when they have relapses--try another. How stupid are we to take these expensive drugs, untested over the long haul, for the false sense that maybe we will not need a cane or wheel chair. MS is a mystery. The symptoms will come and go for most of us and eventually just stay. An honest doctor will tell you that. Good luck finding one, they are all mostly on the drug companies payroll now.

Michael S. Kaplan on 21 Sep 2006 8:28 AM:

Hi Diane,

Having been involved with reviewing data in many of the actual studies that prove the point you are making wrong, I think we will have to agree to disagree on this one, sorry!

jennifer on 26 Sep 2006 9:36 PM:

i myself am facing the decision of novantrone or tysabri due to new lesions on every MRI since Feb of 2005.  i have 3 children ages 11 and 9 and my delima is with longterm side effects of each one.  i am not having any physical relapses only new lesions.  my neuro is wanting to be very agressive so i hope these newer meds are worth what we are paying for them!!:-)

Michael S. Kaplan on 27 Sep 2006 12:07 AM:

Hi Jennifer,

How old are you?

This does not really look like a typical case for which Novantrone would be suggested, I am trying to understand what the factors might be that led to the idea. Do you have chronic symptoms?

Igor on 14 Oct 2006 8:56 PM:


About cholesterol, I can tell you that in my country heart disease is not the #1 killer although people here don't care about cholesterol at all. They eat pork, eggs, bbq'd meat, etc and you can only wonder how their blood vessels aren't completely clogged with fat. One of the "secrets" is garlic. Garlic is a natural medicine. Many people don't like its taste (or smell) but it is said that it helps reducing blood pressure and clearing the fat from the blood flow.

So, if you already have to take drugs for MS, you may consider changing some eating habits (hint: add garlic, one part each day before sleep) to avoid having to take yet another one.

Two things I am 100% sure about drugs:

1. They don't cure, they don't remove the cause, they just sanitize the consequences

2. They ruin natural balance in your body and once you start influencing levels of something by taking drugs you body loses the ability to do it on its own.

Drugs == avoid at all costs. Or at least think about it.

Igor on 14 Oct 2006 9:20 PM:

Here is an interesting quote from one of the books someone recommended to you:

“High-fat foods raise blood cholesterol." Dr. Ancel Keys was one of the main proponents of this myth. In a paper published in 1958, Keys showed a graph of the per cent calories from fat in the food of various countries vs. the mean serum cholesterol levels. The data points fell on a straight line, showing an excellent correlation. Dr. Ravnskov added data points from a number of countries deliberately ignored by Dr. Keys. These fall nowhere near the line. Furthermore, CHD death rates among subjects in Finland, Greece and Yugoslavia with similar serum cholesterol levels varied 5-fold depending on which area of the country they lived in!

As you see, my country is mentioned in there, so what I said in the comment above seems to be valid.

Igor on 14 Oct 2006 9:33 PM:

I forgot this link too -- about Lipitor:

Michael S. Kaplan on 15 Oct 2006 1:41 AM:

Well, I was never really in a "diehard, must be treated" category for Lipitor -- my cholesterol was borderline and the test hadn't been fasting. I was just going along with it and then mainly got interested in what I talked about in the post with the combo of factors that might help with the MS?

Igor on 15 Oct 2006 6:50 PM:

What good for you would be to fix MS and get cancer? Lipitor is still considered unknown and untested drug. According to some sources, it would take 20 years to test it properly. Some people reported short term memory loss or even amnesia.

Anyway, many doctors now say that cholesterol is not a signal of impending CHD but the homocysteine which is kept in check with intake of folic acid and B6, B12 vitamins which are soluble only in fat. You also need much more vitamin C than the RDA -- between 2500 and 3500mg daily. It is important for collagen ( production and without it your blood vessels and other connective tissues are prone to decay.

Michael S. Kaplan on 15 Oct 2006 7:14 PM:

And there is always the problem with saliva causing stomach cancer (but only when swallowed slowly, over a long period of time)....

Seriously, I am carefully considering what I am doing with the help of my neurologist, and I feel comfortable with the decisions that have been made (as well as the research that I have done which avoids many of the problems of using the web to find informatin due to the emotions involved here).

Igor on 15 Oct 2006 8:46 PM:

I hope I haven't offended you by caring.

I wasn't implying that you don't know what you are doing.

Instead I wanted to say that having MS is a bad thing, but you still have much more to lose if you aren't carefull.

Here is an interesting quote I found on cholesterol lowering drugs combination with other anti-MS drugs:

"A family of cholesterol-lowering drugs, the statins, have shown anti-inflammatory effects in animal models of MS. However, as of 2005 there is not sufficient evidence that statins are beneficial in the treatment of human MS patients with normal cholesterol levels."

And a story that is inspiring:

our famous keyboard player Laza Ristovski (member of a rock'n'roll band "Bijelo Dugme") is suffering from MS since 1994 and is bound to a wheelchair because people here more often than not simply cannot afford to take the required medications because of poverty. He is taking Betaferon which amounts to 1,100€ for a monthly dose. Mind you, his income (actually pension because he is retired) is 300€ a month and 120€ from that sum goes for the rent. During his carieer he played Hammond organ with the band and last year they held one last concert. I watched it on a TV and he was there playing and he even managed to get up in the end and stand for the ovations from a full stadium. It was simply amazing and fantastic to see what a will power can do.

So whatever happens, never give up.

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