Weaning off of narcotics and using PRIALT

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lafisher42
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/28/2009 9:25 PM (GMT -7)   
Thank you to PaLady for the direction to make a new post. I hope I am doing this correctly. Here Goes.

This is my first post as well as one of my first experiences on the internet. I am 66 years old and have been dealing with chronic pain for 13 years. Originally from numerous back surgeries and Surgery for Carpel Tunnel. From those surgeries I developed Reflex Sympathy Disorder (RSD) . I have had a pump for approximately 7 years and have recently been "switching out" Dilauded, Clonidine, Lioresal and Fentanyl for for Prialt. I also take orally, Oxicontin, Dilaudid, Lyrica, Provigil and Cymbalta. (2-3 times a day 240mg, 12mg, 150mg, 400mg, 60mg (one per day) respectively)

I am interested in anyone's experience, if they have been through the same thing. I am hoping that the prialt will alleviate most of the pain and I can slowly wean myself off of narcotics. I have trouble staying awake and still have trouble with chronic pain in my legs., feet, back and arms. I think some of the new pain is due to "switching out" the narcotics in my pump for the Prialt.

Please can anyone point me in the right direction in this forum and or post back a reply.

I reside in the central coast of California and receive treatment in Camarillo California.

Thank you

lafisher42

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/28/2009 10:53 PM (GMT -7)   
Lafisher,
I'm glad you posted your own introduction. Give it a little time and those who have pumps will respond.

So glad you joined us!

PaLady

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/28/2009 11:44 PM (GMT -7)   
 
 
  La Fisher,
 
     Good evening! My name is Dani. It is very nice to meet you. I do hope you decided to stay. I love the Healing Well Community. The endless resources and knowladge are of great comfort to me.
 
     And I havnt a clue about medicine.  smilewinkgrin   But one of the other fantastic ladies will have some ideas. Take care and I hope to get to know you better as time goes by.
 
*huggs*
    dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


KimberleyMoon
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/28/2009 11:53 PM (GMT -7)   
Dear Lafisher,
You may be interested to read the extensive review of Prialt (Ziconotide) in the July issue of Prescrire.
"Ziconotide:.... NEW DRUG" Prescrire International. October 2008/Volume 17 No 97 pp. 179-182. (Translated from Rev Prescrire April 2008: 28 (294): 255-1/255-5)
This provides a 4-page review (in English) of the clinical and other trials of Ziconotide (Prialt), in clear, decisive language that aims to be objective. In my reading of it I think they have achieved their goals. It does not answer the specific question you ask about weaning off narcotics and using Prialt exclusively, but the information provided is valuable. I recommend it to you.

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 7/29/2009 3:15 AM (GMT -7)   
A great site for pump information is a yahoo groups called Pumpsters. It is designed for individuals either considering pumps or that already have pumps. There is a wealth of information within that group.   
 
 
Question? Are you adding Prialt as a new drug to your mixture or have you had it on board for some time? Some people have good experiences with it - I and many people I have talked with have had very negative side effects. Within one week I started having psychotic thoughts and increased pain. The psychosis is a big problem with this medication. For me, I thought I was being poisoned and kept having thoughts that I needed to "cut my pump out" to stop the medication. That is one drug I would do a lot of research on before I put it in my pump. My experience with Prialt was a complete nightmare.  A very good friend of mine ended up in the psychiatric unit after coming in through ER.  She was having so many psychotic events she had to be sedated until the medication was removed and the remaining amount worked it's way out of her system.  Log on to Pumpsters, they have quite a few files about Prialt and the group is large in numbers so they can give you a wide variety of experiences. Last thing - you are swapping out some heavy duty narcotics for Prialt. It is a non-opiate and the the clinical data it not the strong on it as a sole pain med and I know you have to be very careful with what other meds you mix with it.
 
Here is the Warning Section for Prialt's Package insert:
 
 

Prialt

WARNINGS

Severe psychiatric symptoms and neurological impairment may occur during treatment with PRIALT. Patients with a pre-existing history of psychosis should not be treated with PRIALT. All patients should be monitored frequently for evidence of cognitive impairment, hallucinations, or changes in mood or consciousness. PRIALT therapy can be interrupted or discontinued abruptly without evidence of withdrawal effects in the event of serious neurological or psychiatric signs or symptoms.

Patients should be cautioned against engaging in hazardous activity requiring complete mental alertness or motor coordination such as operating machinery or driving a motor vehicle during treatment with PRIALT. Patients should also be cautioned about possible combined effects with other CNS-depressant drugs. Dosage adjustments may be necessary when PRIALT is administered with such agents because of the potentially additive effects.

Withdrawal From Opiates

PRIALT is not an opiate and cannot prevent or relieve the symptoms associated with the withdrawal of opiates. To avoid withdrawal syndrome when opiate withdrawal is necessary, patients must NOT be abruptly withdrawn from opiates. For patients being withdrawn from IT opiates, the IT opiate infusion should be gradually tapered over a few weeks and replaced with a pharmacologically equivalent dose of oral opiates. PRIALT does not interact with opiate receptors and does not potentiate opiate-induced respiratory depression
 
Full information can be found here:
 
Good luck with the Prialt - please ask you doctor so detailed questions about his experiences with it. Let me know if I can be of any other help.


Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 

Post Edited (Stella Marie) : 7/29/2009 4:46:10 AM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 7/29/2009 7:40 AM (GMT -7)   
hi lafisher42
 
I can't help you with your questions but I did want to welcome you and to wish you the best of luck.  I am very glad you found us and I hope you find friendship and support here.  Please stay and let us get to know you better. 
 
You live in a beautiful place!  I live in southern calif.  I am about half way between LA and San Diego.  I am not on the coast however.  I am in the foothills.  I am about a half hour from the coast. 
 
Again, welcome to the board.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


lafisher42
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/30/2009 6:43 PM (GMT -7)   
Thank you to all those who have responded. i will try and include answers to all of the questions posted.

firstly it is comforting to know that there are people out there like me and have good advice and great information to share. My son prodded me to start using the internet and searched out this website for me. I am slowly going to take in all the information given and put it to use, so again, thank you one and all.

I have been using Prialt for 12 weeks. Luckily I had no adverse physiological problems. I am keeping my fingers crossed. I have read extensively on the side effects as well as my son, so I do have loved ones "keeping an eye" on me. I am going to go to "pumpsters" as see what that is all about, but my newness to the internet is taking some time. I will get it down, sooner or later.

I have been lucky in the area of weaning off of narcotics in that I have not done any serious damage to myself. I have had problems in the past when I dropped my oral doses too low and experienced some serious detox symptoms. sometimes i just hate relying on medication. Double edged sword. On one occasion i seized and was hospitalized for a short time. I lost the two weeks prior to the seizure and when it was all said and done, I had leased a new Dodge Charger and did not believe it until my wife showed me the paperwork. I guess you have to have a sense of humor about some things. I have learned to listen to my body and with the help of my son have instituted a plan to s-l-o-w-l-y reduce my opiate intake.

Off to discover new information on pumpsters and hope to post again soon. Thank you all again.

lafisher42

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 7/31/2009 2:58 PM (GMT -7)   
Take your time weaning of the narcotics. This is not a race and you are not going to get a gold star if you finish faster. Like the rabbit and the turtle - slow and steady wins the race. You are more likely to relapse if you go too fast. Let you body adjust slowly and you will lessen any shocks or cravings to your system.

It take a couple of days for pumpster to approve your joining their group. You just have to wait, but they will send you an e-mail accepting you with instructions on how to log on and access their files. They have hundreds of pump patients with years of experience. I have learned more about pumps, medications, and potenial problems and their solutions from that group.

Please keep in touch with all of us and let us know how the Prialt is working for you. I am hoping it will cover your pain issues with little or no side effects.


Take care

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 


lafisher42
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 8/2/2009 10:20 PM (GMT -7)   
Just got a new computer today and my son got it up and running.  No new side effects noted but my pain in my legs and feet seems to be off the charts today. They are on fire and I cant stand still. I cant concentrate and i am about ready to scream. Nothing changed in my medication, but I guess I can talk to the doctor about my lingering symptons.  Off to the doctor, again, in Camarillo.... Fun, fun fun. At least there is a service that takes me there. The drivers seem pretty sqared away and and put up with 2hour long conversations.  Waiting on pumpsters as indicated from Stella and I am looking forward to posting with any new news that I may have.
 
Hope to post again tomorrow after the doctor visit. Back around 500 pm.

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 8/3/2009 3:33 AM (GMT -7)   
Thanks for keeping us in the loop. Make sure you let up know what happens today. I glad to hear that you do have good transportation. That is so very important = being able to get to your appointments.

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 8/3/2009 3:43 AM (GMT -7)   
My pain level is very high so I never use pain medication Tylenol wrks for me.........I just had carpal tunnel sugery & I'm doing great no pain no swelling.......
SnowyLynne

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