Baclofen Pump question - BobOP ?

[bluegiraffe]

Hi,
I have the smaller size pump and have had 2 refills so far that take place after a 2 month timeframe. The refill concentration has been 500. My doctor increased the refill concentration to 2000 to allow me to have a longer duration before a refill is needed - I believe up to 6 months (maybe less as the mediciation is not supposed to remain longer as I).

My question - at the higher concentration should the flow rate - say 140 mcg/day at the 500 concentration vs the same flow rate of 140mcg/day at 2000 be the same dose I have had ?

I have a call out to my doctor as well - after reviewing the printout I don't understand if the flow on the higher concentration would not be much higher - unless it is automatic.

thanks.

[BobOP]

Hi bluegiraffe

I can share my expereience....a while back, we did the same thing of changing the concentration to lengthen the time between refills. My dose didn't change. I was getting my pump refilled every 2 months & now it is done every 4 & 1/2 months.

The limit on pump refill's is 6 month's due to that being the shelf life of the liquid baclofen.

I am checking with my Medtronic rep to see if they can add to this.

Take Care, Bob

[bluegiraffe]

Thanks for the quick response BobOP.

I heard back from my doctor who relayed the dose is automatically calculated on this new higher concentration (2000) as it was on the previous 500 concentration - so daily dose is the same.

But with the longer duration before a refill is needed - the main reason I requested it - 2 months goes by too fast.

I had the refill yesterday and the next refill states March 2012 on the printout - my concern was the shelf life as you stated. My doctor has me scheduled for my refill in February which would be 7 months.

I have an appt with him in October so have time to ask again.

Appreciate you input - thanks again.

[BobOP]

Hi Blue

I understand your concern on the refill date. I am glad your dr got bak to you.

So did my Medtronic rep
Since the medication is more concentrated the volume delivered will be lower (we give less of the medication) which is why the refill interval is longer.Its similar to if you were taking 10 mg of baclofen per day. You could take 2 pills of 5mg each (the 500 concentration) or 1 pill of 10mg (the 2000 concentration). If you had 30 pills of each you would run out of the 5mg pills in half the time.

I wish you the best

Bob

[bluegiraffe]

Hi Bob,

Your last post is exactly what got me confused on this - unless I'm looking at the values wrong on the printout.

You and I are both saying the same regarding our dose didn't change (my main concern - that I know is ok since I feel the same and the doctor confirmed) - just a longer duration since the concentration is higher now - that I undertstand.

But logically if the daily dose - say for example is 150 mcg/day on the 500 concentration - you would think the printout would have 75 mcg/day listed for the higher (2000 concentration) - or really one quarter since 2000/500 = 4 - would think the dose would state 37.5 mcg/day at 2000 concentration to match the 150 mcg/day at the 500 concentration.

Unless - which I think is the case - that the pump automatically resets the printout stated 150mcg/day to the accurate flow amount for either concentration (?)

[snowy]

I also have the baclofen pump. I had it put in in Dec. 2010. I had one refill last month (June). I will be getting refills every 6 mo. I believe my dosage is 89.96 mcg/day. Might be a little lower because the Dr. decreased it on my last visit. I see him on Monday. He wants to see how I'm doing since lowering the dosage. How is the pump working for you Bob and Blue?

[bluegiraffe]

Hi snowy,
So far so good - I got the pump this past January. Had severe spasticity and contratures in my legs. Eliminated all the extreme pain to where I no longer take any oral meds

It has not enabled me to walk and I have challenges with the weakness - continue to work towards strengthening if I can.

Much better with the pump relieving the pain.

If you do a search for 'baclofen pump' you will find alot of posts with information from many of us that recently had the pump implanted and shared info/experiences.

How is the pump going for you ? Being fairly new to it as well.

[rdmc]

Okay, complete novice here because I'm scheduled for my first refill in August (6 months for me.).

But my take on it, BG, is that you want your mug per day to be the same...because that's your total dosage for the day. what you're not seeing on the readout is how "much" of the med (quantity wise) is being delivered to achieve that dosage per day.

The place that would be reflected would be in the date scheduled for your next refill. So your refill date using a higher concentration will be further out than it would have been using a lesser concentration because you're using less of the quantity in the pump to achieve the daily dose ( even though the daily dose is the same.)

Maybe that's wrong, but that's what is sounds like is happening

[bluegiraffe]

Yep - think you are looking at it right rdmc.

I've been looking for the quantity value on the printout.
Sense is the pump automatically sets the quantity to equal the dosage.

Thanks

[snowy]

Blue,
Thanks for the info. I will have to check out more posts on the pump. Always nice to see how others are doing on it since I don't know anyone that has one. The main reason I got the pump is the I couldn't bend my R. leg when I walked which made it very hard to walk. Since getting the pump I can now bend that knee.
The Dr. told me that it would take me at least 9 mo. at least to get the strength back from not using those muscles in quite awhile. I had inpatient and outpatient PT. I now do exercises at home, working on getting the strength back. In my case it is taking awhile to get the right dosage. I think right now I am at where I should be with the dosage. Will see on Monday when the Dr. checks the "tone" in my legs.

[bluegiraffe]

Bob,
Did you feel different after you switched to the higher concentration ?

After around 32 hours I felt different - not as good. I thought if I felt different it would be a looser feeling, but I actually feel tighter in my legs and a bit more tired.

Wondered if you had changed feelings as well.

Thanks.

[bluegiraffe]

snowy,
good to hear your story as well !
keep us posted; its nice to share experiences and progress.

[BobOP]

Hi Blue

I can say I really didn't feel any different when we changed the concentration. However, we didn't change my concentration for about 6 years after I started using the pump.

Take Care, Bob

[nappy]

Happy so far

I have been happy for the most part so far with my pump.

I have had it for two years.

When I had it implanted I chose the larger pump with the idea that I would be able to go longer between refills. This was even discussed at my preop visits.

Now I have been on the higher concentration for about a year and still need to go back to get refills because of "shelf life."

I was hoping (and uninformed) that I could get to a point of visiting my neuro and my pump dr. only once a year unless I was having problems.

So when it comes time to change the pump I think I might choose to go with the smaller version. I tend to bang this one into things- like the counter- and it is painful.

I am also extremely shortwaisted and I am always "tucking" the pump under my ribs

[bluegiraffe]

Bob,
Thanks for the update - I am feeling more myself again as of last night - maybe some sort of transition to the higher concentrate for the first day+ ? Not sure; but happy I feel back to myself.

Nappy,
I am happy with the smaller size pump - doesn't get in my way at all, almost don't know it is there - except for the scar (from January implant). Although I am small; I do find that need some wider waist clothes to fit loosely & feel comfortable.