Source of Featured Image:
Dear Pain Matters blog readers,
Many nerve pain sufferers say they have tried EVERYTHING, to no avail.
The good news is that some patients with severe, intractable nerve pain obtain pain relief following Ziconotide (Prialt) treatment (while, sadly, others don’t).
Ziconotide (Prialt) is synthesized based on the venom of a marine snail called Conus magus.
For further details on Ziconotide (Prialt), please refer to literature including a paper by McGivern (2007). You are also welcome to go to my earlier blog post, here:
BRIEF ANALYSIS OF ‘PRIALT USER REVIEWS’
An internet site called ‘Prialt User Reviews’ offers a collection of patient reviews:
The ‘Prialt User Reviews’ show that Prialt treatment may be a ‘hit-or-miss’ treatment for many patients with severe nerve pain. Thus, while some severe nerve pain sufferers obtained significant pain relief from Prialt (that outweighed its side effects), many others were worse off due to Prialt’s severe side effects.
SOME POSITIVE ‘PRIALT USER REVIEWS’
A patient with low back pain commented:
“I did not realise how much this new drug helped me until I had to come off of it for a short period of time.”
Another pain patient wrote:
“I developed a BAD reaction to this med, even though it worked great for my pain. Now I have all kinds of allergies and having trouble finding a med that is as effective without side effects.“
A pain patient with 2 spinal operations wrote:
“Since I’ve had the pump, the pain is no longer in my legs. I will be ever thankful to that little snail and its ooze. God bless researchers.”
A patient with chronic pain for over 10 years had a positive experience with Prialt. In her own words, “…since I have been on these meds, things have turned around for the good….I thank God every day that I have my life back….”
Another pain patient stated:
“This for me has been a “life changing” positive experience. I have been on the drug well over six years with NO side effects whatsoever….This has changed my life for the better as I am now able to do volunteer work…I had my occipital nerves sectioned as well as steroid-induced osteoporosis, so totally endorse this drug for neuropathic pain.”
A cancer survivor with chronic pain stated:
“My pain was due to cancer which is now in remission. My first pain clinic pushed me too hard to increase Prialt and side effects were bad! I heard music and it felt like my teeth were melting! I kept reducing my Prialt until it was mixed w/a narcotic and that combination made my pain level from a constant 9 … to a livable 5-7! This is the lowest my pain level has been in 9 yrs! … I am finally pleased with my Prialt and my Life. After 8 years of trying different combinations and Prialt Levels and 1 pump reposition and 1 pump replacement, I am finally able to Live. I can meet my husband for lunch most days ….Yes, it took several years to get the level just right and the side effects lower, but it was totally worth it to finally have a more normal and happy life!”
SOME NEGATIVE ‘PRIALT USER REVIEWS’
A patient with CRPS (RSD) for 8 years stated that Prialt is the ‘best at relieving pain BUT it’s not worth the side effects I get….several bad experiences and I always stuck it out since the relief was so good. It’s no longer worth it. I have no life, hardly leave the house and spend most of the time talking to myself’.
A former user said “This medicine did help my nerve pain (moderately) but the memory loss is horrible. I lost 50 lbs in 6 months. I can’t concentrate well, agitated, no motivation, have extreme anxiety……I started having a pungent perfumey-like smell constantly, which started to become an obsession…..led up to a full blown manic episode …no sleep….thoughts of not wanting to live anymore….border-line psychosis….I’ve been off this medication for over 2 weeks now but still suffer from some of these side effects…..”
A pain patient who unsuccessfully underwent a Prialt trial wrote:
“…I started an IT pump trial with Prialt…..and the med was increased slowly (started out with about 4 mcg/day. Increased eventually to about 7 mcg/day). With the first increase, my pain improved (decreased). With each successive increase of Prialt, my pain increased and so did side effects. I became extremely dizzy, nauseated (with vomiting), confused, lethargic, my vision blurred, and I was unable to do anything but lie in bed and wonder what Prialt was doing to my brain…..”
IS DOSAGE AN ISSUE?
I find it very interesting that nerve pain levels did improve in several patients following Prialt treatment, despite severe side effects (see above).
Is it possible that the intrathecally-administered (spinally-administered) dosages were simply too high for those who suffered severe side effects, post-Prialt treatment?
Would nerve pain patients benefit from lower Prialt dosages for longer periods (before deciding to increase dosages)?
Consider this example:
A 59-year old female with severe pain due to chronic trigeminal neuralgia (TN) pain underwent a single-shot trial of intrathecal ziconotide. To reduce any adverse effects, the ziconotide dosage was intentionally kept very low, at only 1 mcg. The patient’s TN pain levels dropped from ‘9’ to ‘6’ (that, unfortunately, returned to her original pain levels of ‘9’, 4 hours-post-ziconotide). As such, 1 mcg/day ziconotide was added to her intrathecal combination of morphine and clonidine. At this low dosage, the patient reported significant relief from TN, and (importantly!) no side effects (Michiels et al, 2011).
According to Webster (2005), to minimise adverse effects while also maximising pain relief, initial dosages must be very low and titrated very slowly. Thus, for many patients, there is a fine balance between minimal adverse effects and maximal pain relief (Webster, 2005).
Ongoing studies are warranted to ascertain why Prialt treatment offers pain relief (with minimal side effects) for some nerve pain patients, but not for others.
Many patients had to stop using Prialt due to extreme, horrific, and intolerable side effects that included severe mental impairment, psychosis, personality changes, memory loss, hallucinations, minor to severe swelling of joints, tremors, paranoia, pain, bad mood swings, problems with sleeping, hearing loud music 24/7, confusion, anxiety attacks, depression, suicide risk, severe sinus infection, slurring speech, severe neurological symptoms, vision problems, severe weight loss, burning skin/electric shock sensations and allergies. NB It is not clear whether some of the aforementioned side effects were solely caused by Prialt and/or due to other unknown factors. Further studies of Prialt’s side effects are warranted.
Many studies into other novel drugs are underway (more later).
Wishing all pain patients less suffering and more hope.
PS Please read the entire Prialt Patient Information Including Side Effects sheet before deciding to use Prialt.
“Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment…..”
PPS It is important to note that not all Prialt users will offer feedback (positive or otherwise). Furthermore, human nature tends to focus on the negative, rather than on the positive. It is possible that many who obtain pain relief from Prialt choose not to post comments, while others who suffered severe side effects due to Prialt may offer feedback (to help others).
(1) McGivern; Ziconotide: a review of its pharmacology and use in the treatment of pain; Neuropsychiatr Dis Treat. 2007; 3(1): 69–85.
(2) RxList – The Internet Drug Index
Prialt User Reviews
(3) For more information on Prialt, please refer to:
(4) Michiels et al; Trigeminal neuralgia relief with intrathecal ziconotide; Clin J Pain 2011; 27:352-354.
(5) Webster; Ziconotide in Complex Regional Pain Syndrome (2005)