Doin' Drugs - 2

Anyone who has dealt with MS knows it is basically a game of gradually increasing piles of drugs.
Disease-modifying Drugs (DMDs) - which we think do something.
Anti-spasm drugs- which may not help spasms until you are passed out
Drugs to keep your sphincters closed
Anti-depressant drugs: which make you dizzy and confused
Anti-pain drugs: which knock you out
Drugs to counter the effects from the above drugs, which include vertigo, incontinence, weakness, sadness, poverty, etc, etc.

Well, maybe not those last two...

It is always tempting to just toss the drugs away and try to manage the illness without them. A few muscle spasms will teach you to rethink that; the inability to walk will make you grab your DMD needle like a heroin addict and gratefully shoot up in the hope that you can still stagger a little while longer.

And then there's the illegal drug, that always makes me feel like I'm making a pumpkin spice latte or something. The one requiring grinding and special machinery and inhaling. The one that, surprisingly, works, eliminating muscle spasms quickly, without the cheery side effect of me peeing my pants, a freebie with the other antispasmodics.

But I need special permission to have that drug. So I'm starting the effort, with the support of my doc, to get some legal stuff. It's a bit frightening, given that our current government finds it more evil than outright murder. I have to send them passport-type photos, and become officially registered, which I wouldn't have to do if I had a long gun. Odd, no?

Just sayin'

I want a new drug

I want a new drug, yes I do.
Huey Lewis and the News
I want a new drug
One that won't spill
One that don't cost too much
Or come in a pill

I want a new drug
One that won't go away
One that won't keep me up all night
One that won't make me sleep all day


One of the most awful things about MS is the endless piles of pills that are prescribed to you to manage the symptoms. They cost all sorts of money, they interact with each other, causing more symptoms, they rob one system to manage another.
I've fought the drug thing as much as possible and even resent taking the ones that are supposed to be managing my disease (the endlessly expensive Copaxone)
Lately, though, I've found a new drug, one that I had forgotten about.
My symptoms are relatively quiescent at the moment, so I'm doing the exercise thing, and I tell you, if you can force yourself past that 10-15 minute barrier and break out in a sweat, those endorphins are fabulous.  I could become an addict, easy. Today I was singing along as I gasped through 30 minutes on the elliptical trainer - at least until someone else came in. Sweating like anything, no glowing for this gal. It was wonderful, joyful, painful....;-)
I'm trying to be careful, keeping cool, trying to keep my fluids up - but once I start it is so hard to stop....
Love it.

Say WHAT?

Last November, the company asked the FDA not to approve any ANDA for Copaxone until the product is fully characterized. It further maintained it isn't possible for a generic applicant to show that its product has the "same active ingredient" as the drug "because neither Copaxone nor any significant subset of its polypeptides has been fully characterized, and because it is unknown which of Copaxone's potentially millions of protein-like polypeptides are clinically active and responsible for its therapeutic effects in reducing the frequency of relapses in patients with relapsing-remitting multiple sclerosis," according to the FDA's response, available at regulations.gov.

Read more: http://www.fiercepharma.com/story/teva-talks-healthcare-reform-copaxone/2010-05-13#ixzz0nwH6NvO5


Ya gotta love being a guinea pig. I've just found out that my dear copaxone may be behind some of my high blood pressure and liver abnormalities. Not that anyone knew about this, apparently. It's endearing to be on medications which even the developer has no idea about how they work. It's reassuring to think they don't actually know WHAT IT IS MADE OF. It's such a pleasant thought to inject this stuff into my body every day while taking a whiff of optimism juice, hoping it will work, having no idea what "working" really means.


I've had experience with this before. I "did" Vioxx for pain before. I was on Effexor, queen of the iatrogenic disease causing drugs, which also remains unexplained as to how it does its magic. I was on Lipitor, until I got leg muscle spasms (might have been MS, now that I think of it), and put on ASA until they realized it would more likely kill me than save me.


And now as I step into my second half-century of life, as medically managed as anyone can possibly imagine, I'm offered these medications, told they are good, given my prescriptions and told to smile and be a good girl and take them. 


Yeah, I suppose on balance they are probably keeping me alive. But really now, folks. Couldn't I just chew on some nice alfalfa?

medication mambo

One of the biggest thrills of being a "chronic disease" person is that people come at you with drugs for every little thing. Some people choose to take them. As for me, I'm a bit scared of the interactions, the risk of iatrogenic disease.But sometimes one needs the medications.

I know I need the Copaxone, or some disease modifying medication. Why? It apparently reduces flare-ups and damage from the disease. Apparently, and only by 30%- so it's not overly convincing...and the daily shots are toxic enough to my tissues that I have bruises and lumps under the skin for weeks afterwards. Of course, I could get a different drug, with its own set of problems.

And then there's the antidepressant that made me more depressed. Taking it made me suicidal, but no one thought of taking me off it - just told me to take more. Which has resulted in an increase in my blood pressure, now requiring more medication....

So, after consulting with the docs, I am now off the antidepressant. It's lovely, though I am perhaps less so. I've developed a tendency to swear more frequently, and am somewhat more easily angered. But why not? Some things are angrifying! And I like being able to feel emotions. It's novel.

Of course, the antidepressant was Effexor XR, one of the very very worst to withdraw from. My doc tells me to expect at least 2 weeks of hell. Many people can't take it and end up going back on the medication to deal with the side effects. I'm not enjoying the dizziness, the fevers at night, the feeling that my head is going to pop off, the muscle spasms, the general feeling of unreality. On the good side, because I have to deal with so much of that already with MS, it doesn't seem too unusual...and every day I have a little clearer morning, a little more of me rallying around.

In any case, I feel like the queen of drug induced illnesses, always wondering how much of the crappy I feel is due to the medications people give me. Is it all worth it?

And even more puzzling, have any of these drugs been adequately tested in women? Or are they all tested in healthy male subjects, just cos it's easier not having to deal with all those hormones?

Now that's something worth getting angry about!