Hi , I dont know if this is posted properly but we will see . My name is Erin Walter. Im 19 and from New Zealand. I have suffered with LPHS for five years now .
I have seen numerous Urologists , Renal Physicans , Pain Specialists . Iv tried many pain reliefs . Im in pain 24/7 . Every urine test for the past six years has had blood in it , microscopic or visable . I have bad bouts , or ‘attacks’ as i call them , not so often anymore . every two months or so , it was weekly at one stage and i spend weeks in and out of hospital on I.V morphine . I have had a stent put in , a camrea put into my kidney my urologist saw my kidney was bleeding inside . He said he would try to laser it , but it was bleeding from so many different spots that if he tried he would just damage the kidney . My kidney function is fine , and other than low iron levels occasionally im pretty healthy .
LPHS has had a massive impact on my life . I left school at 15 , to study from home . I lost the majority of my friends , if it wasn’t for my boyfriend and family i would have been miserable . My Mum has been there for me , takes me to all my doctors visits . She brought a house just over a year ago with a flat underneath it for my boyfriend – Devin & I to live it . Its great to have our own space , but the comfort of having Mum upstairs if I need her . Iv been with Devin for five years in July , friends say we are like an old married couple and im happy with that . Hes my strength when i have none , hes my best friend and such a blessing to have . It hasn’t been easy for him either , its not nice having a girlfriend who is in and out of hospital , drugged up & always in pain .
Another love of my life is my puppy . his name is Bailey and hes a chihuahua pappilon cross . hes a little over a year old . he sleeps in bed with me , keeps me company when im up late at night.
I’m at a loss as what to do . I’m tired of this, I spend most of the time at home . I dont work and rarely see my friends. As awful as it sounds I do find some comfort in emailing people who know what its like . If you would like to email me its , firstname.lastname@example.org .
Hope you are all having a painfree day / night .
US and Australian research team which has made a breakthrough in revealing how opioid drugs such as morphine both relieve pain and also cause addiction.
The scientists tested a new drug called AV411 that blocks morphine’s effects on glia cells but not on neurons, resulting in effective pain relief without the side effects of addiction.
Currently, AV411 is in clinical trials at the Royal Adelaide Hospital. And it is being developed by Avigen Inc., a Californian biopharmaceutical company.
University of Adelaide (2007, November 23). Strong Pain-killing Drugs Without The Addiction. ScienceDaily. Retrieved November 24, 2007, from http://www.sciencedaily.com/releases/2007/11/071123210617.htm
Pain Therapeutics said it would start testing Oxytrex in the second half of 2007, enrolling into the “Extreme Study” about 120 patients who depend on large daily doses of oxycodone — or doses greater than or equal to 120 mg — to treat severe chronic pain, whom the company said are particularly prone to physical dependence and withdrawal.
There is reason to believe that Oxytrex will produce greater analgesia, while producing lower levels of tolerance and dependence, than oxycodone.
Pain Therapeutics website.
About Oxytrex from Pain Therapeutics, Inc.
“Oxytrex is a unique oral painkiller that preferentially inhibits an excitatory effect of opioid receptors. This excitatory effect is believed to counteract analgesia (pain relief) and cause tolerance. Its inhibition enhances pain relief and minimizes opioid tolerance. We believe Oxytrex represents the first new mechanism of action by an opiate drug since morphine was discovered over 100 years ago.
We are developing Oxytrex to treat moderate-to-severe chronic pain, such as osteoarthritic pain or low-back pain. We believe Oxytrex could be an effective substitute for oxycodone, a leading opioid painkiller, with U.S. sales of nearly $2 billion for the 12-months ending August 2005, according to IMS Health data.”
After numerous surgeries, including 4 cervical spine surgeries, it got to the point that the only way to reduce the pain level was to take large doses of narcoticts. Not long ago I was taking 96 mg of Dilaudid and 100 mg of Methadone daily plus about 8 others Rx’s. Got a morphine pump and soon added prialt. It took months to get off the oral narctoics and my brain is still not producing certains chemicals which cause many different problems. Got the Prialt level too high and had lots of side effects. REduced the prial to about 3.8 and mixed it with dilaudid. This has been working well the last few months for the chronic pain in my neck, shoulder, and arm. The pain in my right hip (from piriforis surgery in 96) has been slowly increasing since starting the prialt.
I can say that prialt is the only rx I ever took that relieved severe pain in my cervical spine. I went from an average of 6-9 down to 3-5. Has been a GOD send. Do have side effects but the benefits far out weigh them.
On a side note I take Toradol for kidney stones. the shots work the best andit much more effective than narcotics.
I would love to hear from others that are taking Prialt or that are thinking about it. Feel free to send an eamil. due to my situation I usually check my email about once per week or two. so if you want a reply remember it may be a few weeks.
Also would like to find updated information about prialt, side effects, studies. etc.
I look forward reading my replies. GOD speed and never ever give up.
Dr. Ian Gilron, an anesthesiologist at Queen’s University in Ontario studied using painkillers morphine and gabapentin in patients with diabetes or shingles-related pain. On their own, each drug reduced pain by about one-quarter or one-third. Used together, they worked simultaneously on different areas of the brain, and reduced neuropathic pain by 45 per cent.In addition, patients didn’t require as much medication to get an effect.
The results of Gilron’s study will be published on April 5, 2005 in the New England Journal of Medicine.
I thought this was weird. The girl was prescribed Duragesic for chronic headache and was “discovered unresponsive and with respiratory depression” 21 hours after the patch was first applied. The boy, who was prescribed the drug for throat pain due to mononucleosis, was found in respiratory arrest 14 hours after the patch was first applied. This is from Health Canada.
Some doctors seem to go now to the other extreme and prescribe morphine for every day illnesses? And to such young kids. And I can’t believe their parents agreed to this.
Some doctors won’t prescribe them.
But even for those who do, the decision to write a prescription for a potentially addictive, high-powered pain killer like oxycodone is never without some trepidation, according to several doctors who attended a lecture on “Addiction Risk Assessment” at Holyoke Medical Center Sept. 14.
While drugs like oxycodone, morphine or fentanyl are necessary to relieve very real chronic and acute pain in patients, law enforcement has found the potent medicines are also readily abused, particularly among the young. The 2003 National Survey on Drug Use and Health found a 15-percent rise in prescription drug abuse by people 18 to 25.
“You are in a precarious situation,” she said. “You need to make sure that people do not suffer in pain as well as make sure the medicine does not get into the wrong hands … It is a challenge.”