Generic Name: Prialt (ziconotide)
For Chronic Pain "I received a pain pump in 2003 after multiple back surgeries left me in chronic pain. After 14 years of cycling through various opiates and feeling like I was sleepwalking through life, my doctor suggested Prialt. It took about a year slowly lower my fentanyl and increase the Prialt, but it was worth it. The only way I can describe it is I woke up! The pain relief I get is almost as good as with the meds I had in my pump, without the side effects. And, I can now poo normally!! (If you’ve had to take opiates for an extended period you can appreciate that) I know not everyone has had the same experience I have. Chronic pain sucks and everyone responds differently to meds, but I hope everyone find relief."
For Chronic Pain "I have had 3 different Medtronic pumps over the years. In April 2016 I had a new pump implanted and filled with Prialt. Immediately my gait was affected but the 3 years I had it, I suffered severe memory loss, renal problems, blurry vision, hoarse voice, confusion, slow thyroid, music in my head, I had to quit driving because I would forget where I was or where I was going. I would fixate on a thought or issue and no amount of facts would change my mind. Tremors/seizure but no loss of consciousness, headaches. I think I had 75% of known side effects. I had the Prialt removed in April 2019. After about 4 weeks the side effects began to subside. I still have the memory loss, the pain in my arms and legs tho, my ears ring but no music, occasionally I have tremors. Prialt did tame my pain but what the side effects did to me is nothat worth it."
For Chronic Pain "My back had been very painful. I had a pain stimulator which didn’t do a thing and a couple of surgeries. My back wasn’t getting any better. My back only hurt when I was upright. If I were sitting or lying I had no pain. After 15-20 minutes of doing anything that invoked me standing, forget it. I was referred to Dr. Juan Garcia. Under his care, I tried every opioid known to mankind in my pump and each one caused terrible itching. It would start at 15-20 minutes after bolus and last 45 minutes to 1 hour afterwards. We switched to Prialt is very small quantities only increasing in small amounts. After about four mouths I was not getting any relief at all. I was switched to continuous flow with bolus as needed. And miracle of all miracles, by George, I think we got it! No pain at all for two weeks. And so far, no side effects are seen. I’ve read every article I can find on Prialt and the cone snail. He’s an amazing little fellow. Just don’t mess with him!"
For Chronic Pain "I started Prialt in August 2020 with the pump, was just taken off of a narcotic through the pump. I went into withdrawals for a month, got a little better. Then I started walking funny, kept forgetting stuff, heard people talking that wasn't there, eyesight had dropped about half, I sit in the house alone staring at the walls. And here 4 months later still like this, I demanded that they cut it in half. I do feel a little better, but next week turning it off. I NEED MY LIFE BACK"
For Pain "Once it was introduced into my pump my legs felt as though they were on fire this was corrected with bynedryel. The following effects were an intolerance to light that caused migraines also the lack of bowel control and the loss of hearing in my right ear and visual problems that left me unable to drive.I had to go to my doctor and insist that the prialt be removed. He resisted but I prevailed. I have never been that sick with multiple illnesses in my life. I have had 3 spinal bone fusions and 2 thumb reconstructions with right and left shoulder operations also a right knee operation and countless spinal injections and on and on. Because of my doctors reluctance to extract the prialt. I called the manufacturer of prialt who stopped it instantly."
For Chronic Pain "Had Prialt in my naive pump for less than 8 hours and had a major allergic reaction. My dr had to remove the Prialt from my pump & catheter and rinse & flush with saline. I was nervous about getting this med due to all the negative reviews online. Wish I had never tried it. This was a bad experience."
For Chronic Pain "After trying everything in my pump, we tried prialt. It was eventually a very good pain killer. But then, I started having dizziness, unsteadiness. Memory issues. I couldn’t remember anything. Cognitive impairment. I was so scared, I thought I had Alzheimer’s which my mom died of...it was so scared, I’ve told my pain specialist and he turned the pump down a little. It helped with the shaking. I’m going to insist it comes out!"
For Chronic Pain "This drug was used in my medtronic pump after everything else failed. It was claimed to be my hail Mary drug. Well, it became my nightmare for months that I tried to endure because my doctors promised that it could put my condition into remission or even calm the pain to a very low roar. Well, It started out as thousands of pins and needles that radiated to parts of my body that were not even affected by my chronic pain. Then it became a hot sensation added on top of that. Then add in the feeling of being stung by wasps over and over throughout my entire body. Not to mention I became so incredibly cranky and moody. The angst and horrible feelings that were happening within my body and in my mind from this drug made me hate every sound, every person, and I actually could not even stand myself. This is a very strong mind and body altering drug. It should be taken off of the market. The side effects are way too unpredictable in people. Why be a human guinea pig?"
For Chronic Pain "I have prialt in a pump, it seems to help. one thing I noticed on the side effects were sneezing. it seems like since I have had the prialt I have not sneezed.do you think that it reversed with me? the reason I think that it is the prialt is that my pump recently quit working. after about 1 day later I started sneezing."
For Chronic Pain "My Dr added Prialt to my pain pump in October 2020. Within a week I started to show side effects, my stomach bloated up, I had nausea, diarrhea, headaches, dizziness, blurry eyes, mucus in my throat, burning sensation throughout my body. Then I started experiencing memory loss & confusion. Along with GI problems, I began to vomit blood. I was hospitalized for severe gastritis, ulcers & GI bleed. But the didn’t understand why I was getting the other symptoms? They prescribed me some meds for my stomach but I continued to get more sick. I couldn’t eat or sleep. Finally in December 2020 my Prialt was removed & within a couple days I felt so much better. Most of my symptoms have went away. Still having memory problems & some stomach issues. My advice is to do your research. Ask yourself “what conditions do I have?” What medications am I on?” Get as much info as you can."
For Chronic Pain "I only had a trial and it was a major disaster. I was observed for 4 hours after the injection and on the way home, 2 hours later, I was dizzy, nauseous, seeing double and could not walk without a cane and my husband holding me up. I had memory loss for 2 days and it took 5 days for the effects to wear off. I was praying that it would work but no luck. Hopefully we'll find something. I have CRPS and oral meds and my stimulator aren't enough."
For Chronic Pain "Had issues with broken and semi healed back L5 pars defect that got worse as I aged and after a few decades of work could randomly be put in bed from pain for 3 days at a time if I tweaked it. Had a minimally invasive L5-S1 fusion to correct issue after I went through every other therapy so I wouldn't have to take medicine (93% success rate, I lost the bet and it got worse). Ended up in bed for 4 years after surgery with constant sharp and ever increasing nerve pain that went down from L5-S1 down leg and to toes without meds unless I laid down. Before I started Prialt I went through every med, have a spinal cord stimulator, and now a pain pump, was on hydromorphone and bupivocaine, 5 oxy 15mg a day, and had a fentanyl 75mcg every two days. With Prialt I have far less nerve pain, I am not taking fentanyl, and gonna work down the oxy. Only problem is it has dulled my mental stats a bit, and it is hit or miss per patient. $$$ but check savings programs. Nothing else works, talk to Dr. about it!"
