13 replies to this topic

[cripple10]

Hey peeps, first time poster here. Probably should have come looking sooner. I’m a T7 incomplete (feeling only) from a shotgun wound to my back 8 years and 2 days ago (not that im counting - hahaha).

I’ve had a baclofen pump for just under 7 of those. My first was a 15ml Sync I then the battery ran out on that and now im on a 20ml Sync II. Hoping to get the new 40ml one soon.

Quick question though, what dose are you guys on? I’m on 720mg (or whatever that calculation is) with a 2000 concentration. My refill days are 47 days. Getting pretty annoyed with having to go and get it refilled all the time. And my spasm is still quite nasty too! Started on 180 and have progressively had to keep increasing. Do you people find that it wears off after a while? Become immune to it?

Just something to ponder. Oh, and if anyone has the new 40ml pump, are they smaller?

Cheers from New Zealand

[Love life to its fullest]

 cripple10, on May 3 2007, 08:28 AM, said:

Hey peeps, first time poster here. Probably should have come looking sooner. I’m a T7 incomplete (feeling only) from a shotgun wound to my back 8 years and 2 days ago (not that im counting - hahaha).

I’ve had a baclofen pump for just under 7 of those. My first was a 15ml Sync I then the battery ran out on that and now im on a 20ml Sync II. Hoping to get the new 40ml one soon.

Quick question though, what dose are you guys on? I’m on 720mg (or whatever that calculation is) with a 2000 concentration. My refill days are 47 days. Getting pretty annoyed with having to go and get it refilled all the time. And my spasm is still quite nasty too! Started on 180 and have progressively had to keep increasing. Do you people find that it wears off after a while? Become immune to it?

Just something to ponder. Oh, and if anyone has the new 40ml pump, are they smaller?

Cheers from New Zealand

Hi there I can not help you directly with your question, I am a nurse (well will be fully qualified in aug) and although I have no knowledge of the particular drug you are on, I do know that with many other drugs the body does become immune to them so to say and dosages do need to be increased, but its also the fact that every person is different, some need a lot and others need hardly any. I dont really know that, that was of any help to you lol.
I lived in NZ for over 20yrs great place! Even though I am an australian I still get all the silly sheep jokes lol. Look forward to reading your post in future to see what answers you got. Kimmy

[davebahm]

720 mcgs?! Wow! That would probably put me in a coma!!! I am at 140 mcgs on the 500 concentration, and I've had it reduced twice (highest was 175). It's been nearly a year and I wish I hadn't done this surgery. I'm tired of the weakness, I fall down more often, etc. The only benefit is that my wife can stretch me easier, but I'm still very tight. I think the main problem is being nearly 40 with CP, and attempting to remain as active as I was in my teens and 20s. I thought this pump would fix that. Nope.

Mine is the 40 ml pump you're interested in. Want it? I don't anymore and am ready to list it on eBay! It is larger, and very pronounced on my stomach (left side). When I'm dressed, you can't tell. My wife doesn't mind, which is good since she's the only one who sees me naked. =c)

Cheers from Colorado, USA.

Dave

[brackman22]

I wouldn't worry. I'm a c6 quad and my level is 1630 at 4000 concentration. No weakness or anything. Just relief from spasms. My doc says it's a pretty high dose but everyone's different. I've been at this level for 6 years. I'm excited about the higher volume pump too because I have to get refilled about every 27 or 28 days. I'll be getting a new one late this summer.

BRETT

[cripple10]

Hi Brett, i might have to look into the 4000 concentration. I thought the 2000 was the highest that you could get, well thats what i was instructed by my doc anyway.. Do you know if i would effectively be able to halve the dose that im on with double the concentration? Would make sense to me... lol

[brackman22]

Basically, your concentration is doubling so your physical dosage amount would be cut in half. So, if you could go every 45 days before refill on 2000 concentration, you could go about 90 on 4000 concentration. Think of it like an aspirin tablet. A 250mg. tylenol is the same size as a 500mg. tablet. Make sense?

BRETT

[hfama2006]

 cripple10, on May 2 2007, 06:28 PM, said:

Hey peeps, first time poster here. Probably should have come looking sooner. I’m a T7 incomplete (feeling only) from a shotgun wound to my back 8 years and 2 days ago (not that im counting - hahaha).

I’ve had a baclofen pump for just under 7 of those. My first was a 15ml Sync I then the battery ran out on that and now im on a 20ml Sync II. Hoping to get the new 40ml one soon.

Quick question though, what dose are you guys on? I’m on 720mg (or whatever that calculation is) with a 2000 concentration. My refill days are 47 days. Getting pretty annoyed with having to go and get it refilled all the time. And my spasm is still quite nasty too! Started on 180 and have progressively had to keep increasing. Do you people find that it wears off after a while? Become immune to it?

Just something to ponder. Oh, and if anyone has the new 40ml pump, are they smaller?

Cheers from New Zealand

Hi there!!
Can I ask you if you have a company that refills your pump for you at home or not? That could make all of t he difference in the world. Please let me know, I will explpain later,

Thanks,

T.J.

 cripple10, on May 14 2007, 11:24 PM, said:

Hi Brett, i might have to look into the 4000 concentration. I thought the 2000 was the highest that you could get, well thats what i was instructed by my doc anyway.. Do you know if i would effectively be able to halve the dose that im on with double the concentration? Would make sense to me... lol

Hi There,

Actaully the 4000 is not approved by the FDA yet.

[cripple10]

Hi, i get mine filled at the hospital here. Im on ACC which is basically an insurance scheme for all New Zealanders. does away with the need for personal medical insurance. all you have to do is have an accident and youre covered. they pay for the refills and the pump and my wheelchair, and mods to my house, and medication when i need it ...you get the idea. www.acc.co.nz

i had a chat with my doctor and he said he hadnt heard about the 4000 concentration but was gonna look into it. we can only get the 2000 here. bad thing about being down the bottom of the world. other than that i wouldnt want to live anywhere else...

[cmoandsbs]

 cripple10, on May 2 2007, 06:28 PM, said:

Hey peeps, first time poster here. Probably should have come looking sooner. I’m a T7 incomplete (feeling only) from a shotgun wound to my back 8 years and 2 days ago (not that im counting - hahaha).

I’ve had a baclofen pump for just under 7 of those. My first was a 15ml Sync I then the battery ran out on that and now im on a 20ml Sync II. Hoping to get the new 40ml one soon.

Quick question though, what dose are you guys on? I’m on 720mg (or whatever that calculation is) with a 2000 concentration. My refill days are 47 days. Getting pretty annoyed with having to go and get it refilled all the time. And my spasm is still quite nasty too! Started on 180 and have progressively had to keep increasing. Do you people find that it wears off after a while? Become immune to it?

Just something to ponder. Oh, and if anyone has the new 40ml pump, are they smaller?

Cheers from New Zealand

[cmoandsbs]

I have the newest pump, I have been injured for a year and half. I have already had to have the catheter replaced. I am at 609 mcg and a 2000 concentration, and mine still needs to be upped plus I am on oral meds. I am a T-11 incomplete, but I have all my abdominal and back muscles. My back muscles will cramp up and spasm so bad on me that it is unbearable. I still haven't reached a dosage that suits me. The newest pumps are a bit smaller.

[cripple10]

I asked my doc about the 4000 concentration and he emailed the medtronic rep. Here is the responce from the rep here in NZ.

"Further to your query regarding available concentrations of Baclofen, it appears that your initial suspicions were correct.

In the US the maximum available concentration is 2000mcg/ml. There is some off label compounding to 4000mcg/ml which might account for your patients observation.

We do not recommend using compounded drug at these high concentrations as the Synchromed pumps for spasticity are only approved for use with Lioresal Intrathecal. In fact, Novartis (who manufactures and supplies Lioresal Intrathecal) tried to produce intrathecal baclofen at concentrations higher than 2,000 mcg/mL and were not able to achieve a stable concentration within physiologically acceptable parameters.

I have attached a white paper that details these findings. (Leave a message here if you want this and i will email it to you)

Our stability data uses Lioresal Intrathecal, thus there is no stability data for concentrations higher than 2,000 mcg/mL."

Cheers
Tama

[Gina]

[color=#993399][font=Century Gothic]
Hey guys. Since your refills are so close together, did you know that there are companies that will come to your house and do refills, boluses, increases, etc.? It's alot easier than going to the hospital or doctor's office and insurance covers it.....just a thought......Gina

[cripple10]

Doesnt bother me too much - I work at the hospital anyway!!!! So sad... hahahaha

[wheeliebear75]

On FDA approval remember that the US FDA is one of the SLOWEST in the world unfortunately. I don't have the same meds as you......but they do have a tendency to work less effectively over time. Just the way the body works. I have a friend who takes a Vicodin every now and then....when she does she is out for hrs., me on the other hand I don't even feel the effects of those; give me Darvocet or Oxyconten. I've become somewhat immune to these drugs over the years.....and it could be the same sort of thing with you and your meds. Another thought is that maybe CP is harder to treat than SCI for spasticity (I don't know just throwing that out there ). Hope you can find a happy medium between muscle control and remaining pain free.