Why if its intermittant, arent the meds PRN?

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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/13/2008 9:23 PM (GMT -6)   
I have provigil for fatigue but that hasn't bothered me for a few weeks. My bottle says to take it once in the morning.
 
I have thing of which neurontin eases, bottle says to take 300mg x 1 per day
 
Baclofen stops my ankles twisting but the bottle says to take it 3 times per day.
 
Since relapsing remtting ms and even the other types, present different symptoms on different days why arent some of these meds until needed used as prn.
 
For example, if I have an attack or episode that lasts one week of where ankle twisting hurts and i use the baclofen but only find I needed to take it once, then why am I taking it for the 50 days of none of those symptoms?
 
I do totally understand that once on baclofen as prescribed (taking it as the bottle says), stopping it abruptly may bring on seizures, but since so much of what we have changes so often,
wouldn't it be better to take what your episode consists of (treatment of symptoms felt).
 
I know that some will disagree .  I also understand if I continue to have daily ankle twisting Id need to take it as prescribed and even when I didn't feel it. That there may come a day that I need a certain dose around the clock and daily.
But..for now? When ankle twists have been 3 times and effectively corrected with baclofen, why should I take 3 per day every day and even in small remissions?
 
I'm just curious as to whether its taken into condiseration that we may not have an attack or symptom that needs a certain med (bac as an example) but for 5 days out of a  month , and sometimes not but twice a year.
 
Doesn't that lead to alot of overtaking when not needed?
 
Your thought's on this will be enlightening. I can't be the only one thats wondered about this. Are we to be compliant to everything that reads 3 x per day even if thats not what we are experiencing, or should we talk with our doctor's about "some" of them, being PRN?
 
 
thanks
 
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/14/2008 6:27 AM (GMT -6)   
Hi Kiera,
 
   Some medications can be taken on an as needed basis while others need to stay in your system for a while to build up effectiveness.  It's something you should probably ask the doctor about if you are feeling you may not need these things all the time.  My personal feelings are that the symptom meds should be prescribed for those things that really interfere with quality of life and daily functioning and not necessarily for every single symptom.  It's really a personal thing though on what you feel you need when and a lot of it is trial and error to determine that.  Good luck, I hope you find some balance with your meds that you feel comfortable with.
 
Kimber 
 
Co-moderator for Multiple Sclerosis
 
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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/14/2008 7:41 AM (GMT -6)   
Thanks Kimber.

Its not a for every little symptom. I indeed did need something for sapsticity during the now past (thankfully) attack. I dont need it now though. Taking it x 3 per day now will set me for no stopping it due to seizures.

I dont have a build up of it in my system as its fast acting and i only had to take it 2-3 times. I know my doctor is trustworthy and i'll ask him how we should handle this. In otherwords it was spasticity noteworthy of taking meds for but has since left...

Is there still a need for it...when its not there. I agree that if this were an everyday thing then id need a certain amount daily and a proper level in my system. Again-intermittent things during different episodes make this one disease that is a little odd when trying ot figure out why your taking lets say the neurontin for neuropathic pain when this time its baclofen you need and no neuropathic pain is present. (although i think neurontin needs build up), I also think with sever spasticity that is ongoing the same is true of Bac.

Im merely asking if its intermittent, but severe to the specific attack, should a person remain on it if it goes away for a long time?
 
Oh and Kimber? I agree about for things that make daily functioning difficult and not every little symptom , that's why its confusing as my functioning was nil during the spasticity and did indeed need
the baclofen, episode now has passed and functioning is back.
Confusing, i know!

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/14/2008 6:45:22 AM (GMT-7)


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/14/2008 8:28 AM (GMT -6)   
I take baclofen on an as needed basis.
Barb/mystery reader
Diagnosed April 2007


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/14/2008 9:00 AM (GMT -6)   
Many of us struggle with this question...and in my case, I simply don't take any fatigue medication or spasticity medication at all, and just deal with that stuff when/if it comes up. My "drug of choice" for fatigue is caffeine (coffee), and if I have a particularly painful bout of spasticity, or neurogenic pain, an over-the-counter ibuprofen.

But indeed, you should talk with your doctor before starting...or stopping...any med, as some of them can have bad side effects if stopped suddenly.

As for baclofen, as you've already seen here, some folks are taking it "as needed", others "as prescribed"....so you really do need to talk with your doctor about what might be best for you.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/14/2008 11:42 AM (GMT -6)   
Thanks all. I was worried id only get lectured haha. I should of known that since we all have these come and go things' and your past support, that it wouldn't be the case! ..i will speak with my doctor. I'll try to have him prn it unless something is unrelenting.

mystery im glad to know that someone else is prn. on bac

ms uppity, if your ankle twists does it come back on its own? Mine didnt without the bac but then again i didnt wait like an hour (guess im a baby lol).

thanks all


kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/14/2008 1:14 PM (GMT -6)   
Like most cramping (which I'm assuming you're talking about with the twisted ankle)..yes, as soon as the muscles relax, it returns to normal. Well, whatever normal is for me! Have you explained to your doctor about the ankle, and how you're using the baclofen to treat that?

He may tell you that the drug is intended for something a little different...for example, the muscles in the calves of my legs are always feeling like they are too "short" for the legs they're in...the sensation is like my foot and knee are being pulled closer together. That's a long-term spasticty that drugs like baclofen are intended to treat. There's a muscle in one shoulder that is tight like that too..never seems to "loosen up", always is tense.

But often this sort of thing will happen: My hand will cramp up..fingers curl under like a claw, muscles in the fingers will contract. Or my foot will try to "curl downward around the edges", and bend at the ankle in odd contortions. This will especially happen when I try to stand, or when first getting out of bed in the morning. Eventually..within minutes....15, 20, sometimes a bit longer, it'll "uncurl". I'll feel pain..like the muscle has been overworked (which it has!), and that will linger for awhile, but the contraction itself will lessen, and eventually go away entirely.

Do talk with your doctor, though. There may be exercises you can try that'll make your ankle more comfortable and strengthen it some so it doesn't have those painful contractions, or if it does, you'll be able to get over them more quickly.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/14/2008 2:08 PM (GMT -6)   

Hi Kiera - gee how posts to you more than me!!!!!

Ya I know a pest.....

I do have a question - I was of the opinion that you were taken off copaxone because the powers to be think that you may not have MS.  But are you back on it again?

And just courious, how much is Copaxone in the US. Here in Canada it is $1400.00 for a months supply

Yours is an interesting case, whereby you seem to have the specialist stumped. I was just wondering - thats all

Thanks

Gary


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/15/2008 8:15 AM (GMT -6)   
I never discontinued the copaxone because it was labs that could have answers within 3-5 days gary. Unfortuantely they skipped the cic (main one) and i returned yesterday to have it done. I overheard them asking which complement (complement results were already given but i think they must be able to be seperate from cic or with)...the other lady didnt answer the one who aske. So i said complements 3, 4. She said well i have 3 but i dont know about the other. i said if you look where i was here last week it said cic and 3, and 4 but the cic wasnt done. So i can only hope she marked it with 4 as well.

I was expressing how i couldnt feel correct taking the shot and not knowing , minus maybe 2 days of frustration and confusion, i kept taking it.

Yes i have them stumped. This isnt that odd actually. Some with only Ms, have to wait years to have a dx. When you ad a second component such as past reanl biopsy, then each doctor i see has his "own" opinion and unfortunately for me they never agree. With the exception of major neuro institutes...they always arrive @MS.

It is about the same price here with no greater than 50 dollar difference. It also is different depending on the company you get it from. I had an offer from a NY pharmacy an it would of been more.

Mabye a scam, im not sure.

The doctor that began this confusion is not retained now. I wont return to him as even if he has a valid reason, its being looked into and thus far all he was testing for was negative. I didnt want to do what he wished for which was to, leave all my other doctors and go his path. If id of done that and he would of been wrong, i would of had to begin all over.
Insurance wont allow for you to go back and forth but for so long. Had his labs proved correct I def would of considered returning to the Major Hospital for Rhematology to find out what i had. (what he says i had).

When this last result comes back, if its normal i wont seek it out. As even my sed rate is norm.
ana: norm
anca: norm
complements 3,4 norm
creactive protein: norm

so the last lab will tell.

Honestly, from what I've experienced, ive never saw two doctor's in my local area that even remotely agreed with one another. Its only when im in a neurological institute that they have such a brief and easy way of naming it, that i know.

I wont deny that i wonder all of the time. Why its like this. It might be my area. They may not be that educated or updated on MS. I'm not sure.

When i went to this last institute i told them..do not tell me its MS if there is anyway at all you could be wrong, with that said, they told me you DO have MS. You have R and R etc.........

Question for you? Which would you believe? Local doctors or neuro institutes? Its hard certainly to have questions and this confusion...sometimes so stressful it throws me into episodic period.

I do not fit the criteria for everything with MS, i fit every single symptom and sign as far as clinical. So therein lies most of the problem.
The major clinic never even paused at this though. My exam shows them things that I , myself do not see. They seem very definitive about their answer. They will not even say Possible MS.

thanks

kiera

p.s. yo yo isnt fun and this sure has not been any help. (going through another doctors guess)
Every day brings us closer to what we reach for .........in all things.
 
Kiera

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