SPASTICTY MEDICATIONS???

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SPASTICTY MEDICATIONS???

Postby jam » Mon Oct 26, 2009 7:26 pm

Just wondering if anyone has found the best spasticity medication as I need some thing to do my Xmas shopping with and to be able to move about the house for any length of time would be good.

Many thanks 8O
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Postby MrsGeorge » Tue Oct 27, 2009 7:07 am

I was on baclofen for my leg spasms until I got knocked up. It did help to calm them down so I could walk better. Didn't make them go away though.
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Postby sou » Tue Oct 27, 2009 9:54 am

I have tried baclofen, but quit it. I will be a little sarcastic. I apologize in advance.

It is an awful drug presented as a top anti-spasticity treatment. Of course, it relaxes stiff muscles. But it relaxes non stiff muscles, as well. Take 30 mg and if you manage to walk, please tell me how you did it.

What those great minds have not understood is that we don't give a sh*t for the spasticity indice and statistics. We only want to walk! What kind of monstrous, sick mind thought of a drug to improve mobility that causes weakness?

I am really pissed off when I read about those miraculous drugs for spasticity. The great minds can't admit that they can do nothing but tell us bullshit. "How can it be? I have studied for 10 years! I am great! I am the best! How can this stupid patient protest that MY drug does not help?"

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby euphoniaa » Tue Oct 27, 2009 11:28 am

sou wrote:Of course, it relaxes stiff muscles. But it relaxes non stiff muscles, as well. sou


Interesting comment, sou... :) That's just about what I heard when I was first diagnosed and trying to find out about baclofen from forums. My previous neuro automatically wrote me out a script for baclofen at my very 1st appointment without even asking me about my symptoms or history. Two scripts - for baclofen & major pain meds. Even tho I didn't have spasticity or pain. Before she had confirmed my MS dx. Sheesh. Neuros. :?

I know it's a common med for MS patients and many have found relief from it, but just as many say the same as you just did. I even filled the prescription before I found out exactly what it was for and what it might do to me. 8O

Neuro update - by the 4th appointment she was so furious that I hadn't taken any meds that she fired me as a patient.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby MrsGeorge » Tue Oct 27, 2009 11:44 am

Yeah - I'll agree with you. I was in a chair at the time and was only taking it for a couple of weeks before I found out I was pregnant. The higher the dose, the harder the walking.
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Postby sou » Tue Oct 27, 2009 12:33 pm

It is very useful for patients that have very severe spasticity that causes painful muscle cramps. But it is definitely not a drug that will help you with anything else. It can only make you worse, tired and drowsy.

There are NO medications for improving walking in patients with spasticity, nor will ever be. Don't talk to me about aminopyridine or botox injections. I don't care if I can walk 30m in 1 millisecond less.

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Postby jam » Tue Oct 27, 2009 3:46 pm

Thank you for taking the time to respond. It was not what I wanted to hear but what I had expected!

Does anyone think trying a low dose of Baclofen would be useful?


Thanks


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Postby sou » Tue Oct 27, 2009 4:29 pm

Advice on spasticity is like asses: Everybody has one! Here is mine:

1. Ignore what others say might help! They have no idea, especially neurologists.

2. Start a regular exercise and stretching program with the help of an experienced physiotherapist.

I won't tell you to set a realistic target. Dignity should never accept any discount in our will. What it is to happen, will happen. We don't need estimations by neurologists because they will be completely incorrect. The only use of them is to know what NOT to expect.

MS is not unpredictable. It's neurologists that can't predict it and they blame MS for their inability, instead of themselves.

I wish you good luck!

sou
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Postby Brainteaser » Tue Oct 27, 2009 11:46 pm

The only thing worth taking is 4-AP ie 4 Amino-Pyradine
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Postby sou » Wed Oct 28, 2009 1:41 am

4-AP is a potassium channel blocker. It has been proven that potassium channel blockers prevent remyelination. Yet, it doesn't work for everyone and its effects are far from adequate.
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Postby euphoniaa » Wed Oct 28, 2009 4:39 am

jam wrote:Does anyone think trying a low dose of Baclofen would be useful?


Hi again, Jam. If you're considering Baclofen, I hope you'll really discuss the dosage with your doc. Another thing to consider is that, as my pharmacist explained to me at the time, this med has to be taken on a regular, daily basis for weeks before it's truly effective. It's not something you can keep around like an aspirin to take when your muscles feel bad. And...you can't stop it abruptly, but have to wean yourself off it gradually. It's a serious med. I'm still stunned that my neuro handed it to me so casually without even telling me how to take it or even WHY. Yikes.

Here's a link to Baclofen prescribing info and a quote.
http://www.nlm.nih.gov/medlineplus/drug ... 82530.html

Do not take more or less of it or take it more often than prescribed by your doctor. This drug must be taken regularly for a few weeks before its full effect is felt...

...Do not stop taking baclofen without talking to your doctor, especially if you have taken large doses for a long time. Your doctor probably will want to decrease your dose gradually.


I hope you find relief!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Baclofen

Postby jam » Wed Oct 28, 2009 12:49 pm

Thank you for responding, I am always amazed at your willingness to help! My doctor and pharmacy have provided a schedule outlining the best way to take it so I will give it a go. As they say, nothing ventured nothing gained.

I have to agree about the incompetency of neurologists with the illness. Is that because the illness is not as exciting to them as a brain tumour?

Thanks again.


Jam :wink:
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Postby jay123 » Wed Oct 28, 2009 2:43 pm

sou wrote:4-AP is a potassium channel blocker. It has been proven that potassium channel blockers prevent remyelination. Yet, it doesn't work for everyone and its effects are far from adequate.


Is this a proven statement, I haven't heard it before? The newest hot thing coming out is Fampridene which is basically 4-AP, which I was hoping to try after my CCSVI procedure but if it prevents re-mylentation.
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Postby sou » Thu Oct 29, 2009 1:49 am

Hi.

K+ channel blockade impairs remyelination in the cuprizone model

Those are rats, but we have a hint. Remyelination in human CNS is very similar. Of course, the dose makes the poison, but who knows... I doubt it will ever be researched.

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If not Baclofen what aboout Zanaflex

Postby jam » Thu Oct 29, 2009 7:03 pm

What about Zanaflex everyone, gosh I can't even remember where the question mark key is so do pardon me.

I am keen for some thing!


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