Does anyone else think that anti-spasticity drugs are crap?

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Does anyone else think that anti-spasticity drugs are crap?

Postby sou » Tue Dec 15, 2009 6:27 am

Hi all.

I was wondering which drugs are more useless. The CRAPs, the (anti-)spastic or both of them?

I keep reading about how well our all-knowing science and those Saints called neurologists can manage MS symptoms, but is there something wrong with me that can't seem to find a good way of relieving spasticity without feeling like dead?

I was thinking about amputation. Ok, I won't be able to walk, but at least I won't have to take drugs that make me feel awful. I can't walk either way and, of course, I have quit taking the drugs because they offered NO help at all.

Potassium, magnesium, GABA tablets, stretching, exercise, baclofen, tizanidine and other crap like that don't seem to help. My surgeon refuses to remove my legs. So, dead end?

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Algis » Tue Dec 15, 2009 6:34 am

All of the listed did "nothing" to me to help; or "all" were useless to me :) - if that helps...

But I have to emphasize that although I have had big spasms and stiffness ; I do not remember to wish to have my legs amputated; so it is all subjective.

A glass of Vodka?
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Postby jimmylegs » Tue Dec 15, 2009 2:23 pm

hey there sou, how much k and mag were you taking? for how long? do you have bloodwork for your mag levels? sounds like you are having a very frustrating time :(
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Postby bigfoot14 » Wed Dec 16, 2009 8:10 am

The drugs didn't help my wife either...

She gets the best relief from spacticity by eating a pot brownie before bed

this is an issue for us, as pot is illegal here in Illinois :(
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Postby ElMarino » Wed Dec 16, 2009 9:29 am

Baclofen was useless but Tizanadine has some effect on me.

I just received botox injections in my abductor and hamstring muscles. That was a week ago and it takes effect after one week to ten days. Nothing yet but I still have three days to go.. I'll let you know if anything happens..
Apologies for my terrible username. I never thought I'd use the forum much when I registered..
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Postby Frank » Wed Dec 16, 2009 10:10 am

Especially during the time after my surgery i could not work-out/stretch in any way so spasticity/stiffness in the night/morning became a real issue for me.
Baclofen did nothing for me. Valium (Diazepam) improved the spasticity to some extent, but far from beeing a complete relief.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby gabelle » Thu Dec 17, 2009 6:19 am

I tried all the drugs you mentioned with the same ill effects. I take the compounded drug 4-aminopyridine (4-ap) and it does help with the spasticity. it does not totally relieve it, but I can sure tell the difference when I don't take it. I also had a baclofen pump trial and it really relieved the spasticity, but I do not want the surgery. It did not make me sleepy or loopy, but I was so relaxed/weak that I coulnd't even sit up on the side of the bed with help.
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Re: Does anyone else think that anti-spasticity drugs are cr

Postby HarryZ » Thu Dec 17, 2009 7:59 am

Sou,

When it comes to using different drugs to try and help with MS symptoms, the results are extremely varied. What works for some people doesn't do anything for others and vice versa. It becomes a trial and error situation and that can be very difficult for the MS patient.

When my wife was alive (MS for over 35 years) she had a lot of spasticity in her legs when sleeping a few years before she died. We went to a pain clinic here and the neurologist tried Lyrica. She could only tolerate the lowest dose but fortunately that fixed her problem. She was also able to stop using the drug and the problem did not come back. The doc told her that in some cases with neurological problems, the nervous system just needs a "jolt" to change its actions and it may repair itself.

My wife was also offered the use of medical marijuana. The neuro was doing a clinical trial with the MJ at the time and stated he was getting some very positive results from many of the patients. Not sure whether medical MJ is available to you but if it is, it is worth considering.

Harry
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Re: Does anyone else think that anti-spasticity drugs are cr

Postby sou » Thu Dec 17, 2009 1:37 pm

HarryZ wrote:When it comes to using different drugs to try and help with MS symptoms, the results are extremely varied. What works for some people doesn't do anything for others and vice versa. It becomes a trial and error situation and that can be very difficult for the MS patient.


This is definitely NO science, is it? I don't care about the complexity. I am an end user and neurologists consider themselves experts. If they can't help, there are thousands of honest jobs they could do instead of telling people that they can help and do nothing else but talk nonsense and give drugs more horrible than the symptoms themselves. Personally, I prefer burning my money than giving to a neurologist. And they must stop telling people that they can manage symptoms.

NO THEY CAN NOT!!!

I have tried lyrica and neurontin and seem to make matters worse. Much worse. Wasn't neurontin the drug whose trial results for MS were fake?

Give me a billion $, a sack of flour and a disease and I can make you the best drug ever.

sou
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Re: Does anyone else think that anti-spasticity drugs are cr

Postby HarryZ » Thu Dec 17, 2009 2:03 pm

I have tried lyrica and neurontin and seem to make matters worse. Much worse. Wasn't neurontin the drug whose trial results for MS were fake?

Give me a billion $, a sack of flour and a disease and I can make you the best drug ever.

sou


I can certainly understand your frustration in obtaining treatment for your symptoms. My wife, who had the disease for many years, was beyond frustrated at the medical world when it came to MS.

Neurontin was a drug that was falsely advertised by the drug company who manufactured it and was caught when one of their cheif PhD sales reps blew the whistle on them. Not sure if the court case has gone to trial or if they settled out of court. To my knowledge, it wasn't specifically used to treat MS symptoms but may have been promoted to some extent in this area. Another black eye on the pharmaceutical industry!

I sure hope you can find some relief for your problem.

Harry
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Re: Does anyone else think that anti-spasticity drugs are cr

Postby NHE » Fri Dec 18, 2009 2:41 am

HarryZ wrote:Neurontin was a drug that was falsely advertised by the drug company who manufactured it and was caught when one of their cheif PhD sales reps blew the whistle on them. Not sure if the court case has gone to trial or if they settled out of court. To my knowledge, it wasn't specifically used to treat MS symptoms but may have been promoted to some extent in this area.


I was written a neurontin prescription for neuropathic pain back in about 2000. I did some reading on it and discovered the lawsuit for their illegal marketing tactics and never filled it.

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Re: Does anyone else think that anti-spasticity drugs are cr

Postby HarryZ » Fri Dec 18, 2009 10:23 am

was written a neurontin prescription for neuropathic pain back in about 2000. I did some reading on it and discovered the lawsuit for their illegal marketing tactics and never filled it.

NHE


I think it was back about that time that Park Davis, owned by parent company Warner-Lambert, hired a PhD scientist who wanted to change his career and do medical research. But Park Davis had different plans for him. They figured that since he could legally use the title "Doctor", medical docs would be far more apt to see him on sales calls as opposed to him being just another rep. And they were right!

This guy got to see doc after doc and preached what Park Davis wanted him to about Neurontin. And the lies and deceit finally got to this fellow who blew the whistle on Park Davis. Hence PD being charged by the FDA.

Pzifer, who eventually purchased Warner Lambert, acknowledged the wrong doing and supposedly paid a heft amount in fines.

And I thought that Biogen/IDEC was a shady company!!

Harry
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Funny thing about neurontin

Postby Rebecca » Fri Dec 18, 2009 9:33 pm

My neuro suggested meurotin to me once and I researched it, saw a lot of stuff on side effects and said "no thanks". I just did some stretching at night and forgot the drugs.

A long time ago I did use baclofen and it was quite effective for me. I took it at night and it actually helped me sleep more soundly. Then again, spending a half hour a day in the sun helps me sleep just as soundly as I slept with baclofen.

I'm about the least expensive MS patient around. I don't take any drugs. I just have an MRI every few years to see what the inside looks like and a little physical therapy from time to time.

Sometimes I think the neuros prescribe all kinds of stuff because it makes them feel like they are doing something. LOL It rather amuses me. It scares me too, though, because it seems to me the drugs are all so dangerous.
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Re: Does anyone else think that anti-spasticity drugs are cr

Postby NHE » Sat Dec 19, 2009 3:51 am

Hi Harry,
Back then I had read that part of the lawsuit was based on the illegal activity of putting a sales rep in with doctors when they met with patients and discussed medication options for the patient. Was this the guy that did that?

Still, the fines that they pay are a small percentage of the profits they make from their "wonder drugs" and are probably just considered part of the cost of doing business. The thing that really scares the pharma is government run health care but that's a subject for a different thread.

NHE
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Re: Does anyone else think that anti-spasticity drugs are cr

Postby HarryZ » Sat Dec 19, 2009 7:13 am

NHE wrote:Hi Harry,
Back then I had read that part of the lawsuit was based on the illegal activity of putting a sales rep in with doctors when they met with patients and discussed medication options for the patient. Was this the guy that did that?

Still, the fines that they pay are a small percentage of the profits they make from their "wonder drugs" and are probably just considered part of the cost of doing business. The thing that really scares the pharma is government run health care but that's a subject for a different thread.

NHE


Hi NHE,

Gee, you are really taxing my memory on that question :)

But now that you mentioned it, I do believe this scientist stated in the magazine article that he was involved with patient drug options because he was a "doctor".

And you are so right about the fines these companies pay....part of the treasure chest they build up from the immense profits they make. As one big pharma person said, that's the cost of doing business in this industry!

Harry
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