Baclofen Trial and transitioning my meds to the Baclofen Pump

Celsta · 10-27-2009, 09:10 PM

Have a rare disease of 1 in 1 million called Stiffman's syndrome, for jst over 10 yrs. With it's rareity, lots of guinea pigging. After so long realized I could only tolerate Fentanyl Citrate for pain.

Day after tomorrow I'm having the baclofen trial.

Currently been on: 40mg Valium every 8hrs, Fentanyl Patches 200mcg changed every 24 hrs, and 1600mcg Fentanyl lozenges every 4-6 (but usually every 4).

My valium dose is only some months new, but I've been on the Fentanyl lozenges for 7 years.

If the trial goes well, my implant's supposed to have the baclofen as well as fentanyl, and I'm to quit the fentanyl I've been on for so long orally.

I'm afraid as I'm in pain even with these high oral doses.

My biggest fear is, what if I am hurting to an extreme, & the doctor doesn't allow enough of the combination that I need? He has great reviews, but also seems cocky, and I feel like another patient just comin' through. He Doesn't know about my disease, he just said that, relaxing the muscles is relaxing the muscles. But I'm worried he doesn't understand it fully, and the pain and...well, I just want my spasticity, stiffness AND pain understood and under control since my orals will be taken away.

Also, not much was explained about the trial. Have had so many mishaps in getting spinal taps done. Is it like getting a spinal tap? How many times in the trial, do they inject into the spine?

Anyone else out there where the pain that was once intense even with the highest dose oral meds, finding great control with a pump baclophen/fentanyl mix? Hoping someone can relate.

Any reply/advise, really appreciated.

Celsta

bollefen · 10-28-2009, 11:17 AM

Hi Celesta

I'm doing trials fight now for a pain pump. My first pass was morphine and while I had a surprising amount of relief from pain much more than with my max oral dosage. I had several bad side effects though. I'm Cauda Equina and the morphine turned off my tenuous B&B function for a few days.

I'll go for round 2 with Dilaudid next week, the procedure is like a spinal tap and my doc had problems with all the appliances so went in again a bit higher and it was a bit uncomfortable but quick.

good luck

bill

10-27-2009, 09:10 PM	#1
Celsta Junior Member Join Date: Oct 2009 Location: East Valley,Arizona Posts: 1	Baclofen Trial and transitioning my meds to the Baclofen Pump Have a rare disease of 1 in 1 million called Stiffman's syndrome, for jst over 10 yrs. With it's rareity, lots of guinea pigging. After so long realized I could only tolerate Fentanyl Citrate for pain. Day after tomorrow I'm having the baclofen trial. Currently been on: 40mg Valium every 8hrs, Fentanyl Patches 200mcg changed every 24 hrs, and 1600mcg Fentanyl lozenges every 4-6 (but usually every 4). My valium dose is only some months new, but I've been on the Fentanyl lozenges for 7 years. If the trial goes well, my implant's supposed to have the baclofen as well as fentanyl, and I'm to quit the fentanyl I've been on for so long orally. I'm afraid as I'm in pain even with these high oral doses. My biggest fear is, what if I am hurting to an extreme, & the doctor doesn't allow enough of the combination that I need? He has great reviews, but also seems cocky, and I feel like another patient just comin' through. He Doesn't know about my disease, he just said that, relaxing the muscles is relaxing the muscles. But I'm worried he doesn't understand it fully, and the pain and...well, I just want my spasticity, stiffness AND pain understood and under control since my orals will be taken away. Also, not much was explained about the trial. Have had so many mishaps in getting spinal taps done. Is it like getting a spinal tap? How many times in the trial, do they inject into the spine? Anyone else out there where the pain that was once intense even with the highest dose oral meds, finding great control with a pump baclophen/fentanyl mix? Hoping someone can relate. Any reply/advise, really appreciated. Celsta

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10-28-2009, 11:17 AM	#2
bollefen Senior Member Join Date: Mar 2009 Location: CT Posts: 1,613	Hi Celesta I'm doing trials fight now for a pain pump. My first pass was morphine and while I had a surprising amount of relief from pain much more than with my max oral dosage. I had several bad side effects though. I'm Cauda Equina and the morphine turned off my tenuous B&B function for a few days. I'll go for round 2 with Dilaudid next week, the procedure is like a spinal tap and my doc had problems with all the appliances so went in again a bit higher and it was a bit uncomfortable but quick. good luck bill