Baclofen input please...

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AKmom

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Joined
Jun 2, 2010
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608
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
I am considering trying Baclofen for the first time. Before I ask my doc about it I want to be sure about the real side effects it has. I have read all the side effects and what it does on the web but its always best to talk to those who might use it most and how it effects you personally.

I am currently taking tinazidine (zanaflex) for a relaxer but it only seems to cut the pain part and not really stop the spasticity completely.

So for those who take Baclofen please tell me how it effects you good and bad of it. Has there been an big improvement since taking it? Does it come in generic?
 
AKMom,

Baclofen is a very old drug so it is not expensive ( at least in Canada ). I take it at bedtime and it helps me sleep. I can't say if it helps - my legs are spastic but I am not aware of any pain - just stiffness.

If I take it during the day I feel tired and a bit weak. But if I had painful spasms I would take it during the day for sure. Reading drug side effects before trying the drug is not always a good idea. Every drug has some side effects ( check out aspirin and tylenol ). Deciding not to take a medication (that the doctor feels is indicated ) simply because of reported side effects ( that you yourself may not experience) isn't a good idea.

My neuro suggested that I take 5mgs at bedtime to start and then increase it to 10 mgms which I now take. The neuro that replaced her for one visit thought that I should be taking baclofen 3 times a day because of the degree of spasticity in my legs. I am content with walking the way I do now and if things get tougher I will slowly increase the dose. Yes, expect to be sleepy for the first several days taking baclofen but be patient. It just might be very helpful to you.

Too many people don't stick with a new medication because of the initial side effects - especially with antidepressants. Yet by not giving the medication time to take effect and the body to adjust, people often don't get the relief they could use. That is a shame.

I realise that you have a lot on your plate right now. Can anyone give you a few hours respite?

Lorna
 
Baclofen has made an enormous difference to my walking , going down stairs, getting up off the floor.

It can cause sleepiness, so it is best to start at a really low dose and work it up slowly until it is balanced with, decreasing spasticity and not letting any weakness you may have cause you to fall over. Sometimes a bit of spasticity actually helps you stay upright if you have a degree of wealness..... so thats why each person is different and each dose that they require is different.

I personally have no side effects although it helps me sleep. I forgot it 2 nights ago and was awake for hours. It has a short half life so needs to be taken at least 3 times a day. If I miss my lunchtime dose then it is obvious.

It is relatively safe, therefore playing around carefully with the dose is OK. My Neurologist just said to adjust it as I need. When I have increased the dose I have done it slowly over a couple of weeks so that I am not sleepy during the day.

I am currently taking 20mg 3xday (just increased it recently)

Hope that helps

Aly
 
Hi Joyce.
I am on Baclofen, 25mg X 3 times a day, have been for about 18 months now. I started off on a low dose and worked up to current dose.

I don’t see any adverse side effects from the drug, nor do I see, in my eyes much of a decrease in my spasticity from taking it.

This is based on a few times I have missed the lunch time dose and haven’t noticed much, if any change in me by dinner time. I haven’t missed more than one so I am only speculating on the effectiveness of it for me.
Another factor re the effectiveness of the oral form for me is I recently under took an intrathecal trial of the drug to see its effectiveness for me. I showed a marked improvement during the trial and am now waiting for the next step.

I have reported on my trial here, just do a search for Baclofen pump tests.

I hope this helps you in deciding which way to go.

Cheers
Peter
 
Hi,

I take 80mg of Baclofen daily... 4 tabs of 20 mg spread out over the day. Like others have posted, I see no dramatic benefit from it, nor any dramatic side-effects. Walking is very difficult for me, and I am sometimes in a wheelchair.

I just started 4-AP, and really see no benefit from that, which is a dissapointment, since it helps many...so I'll soon discontinue taking 4-AP.

I highly recommend you try LDN. Of all the drugs I take to mitigate my PLS, I believe LDN is the most helpful.

-Jim
 
If you scroll down to the bottom of this page there are several other threads listed that may have more information.
 
Jim takes 60mg (20 in am, 10 in afternoon and 30 before bed) - no real noticable side effects - however if he misses a dose it is VERY noticable. His spasms really kick up - if he forgets at night they now wake him up.
 
ok thank you for your input. I am wondering what is the max dose? Does it seem to build up to where you have to keep taking more of it to get the same effect when it first started working? I have been on meds like that and usually hit the max dose after a couple years. Then I have to take a break from them for a year or so before going back on them if they were helpful. Right now though the only perscription drug I take is the zanaflex and the very occasional ultram when the pain is over the top.

ND...I agree with the stopping the drugs too soon because of minor side effects is not giving it a chance. But I also have a bad reaction to some meds such as antidepressants...(ie seizures and migrains) and have been told by the doc that if those happen I need to stop immediately.

Jim...I do not know the terms 4-AP and LDN. I would be interested in knowing what they mean (are).

Joel...thanks I will do some research tomorrow for the other threads.
 
i have been on baclofen 10yrs,for me it has worked really well.
i was on 60mg for some years,now 40mg.

if for those of you it does not help or you can not tolerate the side effects there is a baclofen pump you can have fitted.
it can take several weeks to a few months for the drug to get into your system enough so you feel a difference.

a couple of words of warning.........................
it can increase weakness if on high doses,so you have to adjust dosage till you get a balance.

DO NOT JUST STOP TAKING..........if you do there are risks of severe spasms,myoclonus and siezures.

my cognitive function has deteriorated so much over the years,i have been told its part due to the baclofen.
my short term memory is very bad,i can not multi task anymore and can get confused sometimes.
 
Jim...I do not know the terms 4-AP and LDN. I would be interested in knowing what they mean (are)

I don't know what the max dosage of Baclofen is. Some people actually get pumps inserted into their bodies, and I'd imagine they get a very large daily dosage.

4-AP is a drug you can get from a Compounding Pharmacy. It's what the new "Walking Drug" Ampyra is based on. Some people say it helps their walking, but it didn't help me at all. You'll need a prescription. Google it to learn much more.

LDN is Low Dose Naltrexone. Google it as well. Lots of info out there. You either get a prescription or buy 50 mg tables from India (River Pharmacy) dissolve them in water and drink 4.5 mg at bedtime. The theory is it increases endorphin production and boosts your immune system. I've been taking it for two years, and am pretty sure it has slowed the progression of my PLS.

A new one to me, is IBT, Inclined Bed Therapy. You raise the head of your bed 6 inches. Sounds nuts, but I've been using it for three nights and swear I see a difference, but it's way too soon to know for sure.

- Jim
 
Joyce, the max dose seems to vary a bit depending on who you ask. Mostly its written down as 80 mg a day, but I have seen it at 100mg. My GP says 100. I currently usually take 80 mg (20 four times a day) but if I am going out in the evening I often feel like I need an extra dose, which takes it to the 100mg. I have known people on 120 with the blessing of their neuros. I have also heard that if 120 is still not getting you sufficient relief then you need to be on the baclofen pump. Though again, I have heard people get put on the pump when 60 or 80 isn't having the effect.

Back to my own experience, I am currently experimenting with my dose as I am now wondering if it is the frequency that matters more than the amount I take, i.e. if I take 10 mg four hourly is that just as good as 20 mg four hourly, or is it even better because it means I can take it up to 6 times a day so give me more cover? I have also experimented with taking bigger doses first thing in the morning (about an hour before I get up to give me the best possible chance of being able to move easily) and with late at night (to help me sleep). I really don't know the answers at the moment, but I'm glad my GP prescribes it at a reasonably high rate which allows me a bit of flexibility in doses.
 
Thank you. Your answers have been very informative. I did read back a couple pages other discussions about baclofen and I guess its a hit or miss on if it helps on better then the next. Right now I have the question up for my GP doc as to whether he would be comfortable in perscribing it to me and helping me to maintain the dose. Or if I should schedule an appointment with the neurologist I saw in Anchorage back in November. The problems with going through the neurologist is; 1. its two hours driving time roundtrip 2. he is the best neurologist and almost the only neurologist in the state and its hard to get an appointment with him (took 3 month waiting list last time) 3. his front office is a computer and if I have any questions or a problem he and his nurse are slow to respond when you leave a message and it takes several calls up to a week to get a response.
So my GP doc would be the one I would like to help me get started on this. He is just up the road and we have a good working relationship. He is even on my facebook friends list! I told him he could talk to the neurologist about baclofen if he needed to.
 
I've been taking it for almost 3 months. The drug has eased the constant, cramp-like pain I was feeling throughout the day. I have had no side-effects. There is a warning about abruptly coming off of the drug. Among other things, you could experience hallucinations.

It is recommended that once on baclofen, you slowly wean yourself off by decreasing the dosage, should you find it of no value.
 
Zaphoon I am looking forward to being relieved of the 'cramp-like pain" that is so ever present even after taking tinazidine! Still haven't heard my docs decision on what he would like to do. I will call him Monday if I haven't heard a response by then. Have a great weekend everbody!
 
akmom...i was advised not to use baclofen cause it will effect my walking..know were your coming from with the stiffness and pain...olly will put me right but apparenly the spasticity helps you to walk!....and am gonna walk till i drop....................johnny
 
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