Tag Archives: kidney

I was diagnosed with LPHS only about a month ago.

I was looking around on the web because I was diagnosed with LPHS only about a month ago. I thought I’d add my story! I’m only 16, and I’m not really sure if that’s young for this condition but I’ve been suffering from it for 5 years. I had my first kidney stone when I was in 7th grade and from then on, the pain just got worse. I developed more kidney stones but the doctors kept saying they weren’t causing the pain and that I was faking it. Of course, my Mum believed me and I was furious. Doctor after doctor had no cure for me and we were starting to lose hope… Then we moved. I use to live in P.A but in June of this year, 2006, we moved to South Carolina. My pain started getting worse and became chronic. It was so bad, I had to stop going to school and now I’m being homeschooled. Again, we kept going through doctors when finally we met a kidney doctor who said everything I’m feeling sounds like LPHS. We were relieved! My Mum even started to cry! He did a few tests and it turns out that that’s what I have.

I’m put on Blood pressure medicine instead of pain killers because at my age, I couldn’t take a large dose and the largest I was taking wasn’t even working anymore! Amazingly, the blood pressure medicine is working fine. It dulls the pain enough so that I can walk around and not be stuck in bed all day. In January, I’ll be taking another kind of medicine to hopefully mask the pain all together. I’m really excited! 5 years of being in pain and everyone thinking your faking really takes a toll on you!

Anyway, just as an added thing, my doctor said that what is happening with me is that the capsule around the kidney is stretching and that the blood pressure medicine will relax that, or something. I really can’t remember everything he said but maybe, those of you who are taking Pain killers and are finding no relief, should try blood pressure medicine. Everyone is different, so I don’t know if it will work, but my doctor puts his LPHS patients on blood pressure medicine so I’m confident in it.

Ok, I guess I should stop talking because this is getting really long! Thankyou for whoever happens to read this and reply to it!!


Prialt for severe chronic pain

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.


Afraid of pain

My name is Tara and I am from Ohio. I am 29 years old. I have a daughter that is 8. Everything she knows is mommy being sick.

I have Lupus and Loin Pain Hematuria Syndrome. It struck me in 2000. I had several kidney stones and had to have surgery to remove them. Ever since I have had dibilitating pain. I went to many urologist and they all told me the pain was in my head. went on antidepressants and began thinking maybe it was me! I met a wonderful urologist who said I was the first patient he had diagnosed with LPHS. That’s when all my medications started being prescribed. The pain was not being taken care of. I could barely get out of bed. I was vomitting every other day. I had lost 30 pounds in 4 weeks. I slept 20 hours out of everyday. How could I take care of my daughter? My pain was not my first worry but my daughter seeing me that way and worrying what kind of chances she will have in getting these diseases. That thought just killed me. My depression sunk even lower and I was going through a divorce. I noticed I was a totally different person and hated it.

I look back now and I am so glad I made journal enteries. I often thought how much easier it would be if I just died. Now that I am on a road to becoming myself again, I can’t believe what I wanted to do to myself.

I have recently had a pain pump implanted. I am having alot of success with the procedure. However it is causing new pains. My right leg is completely numb and I am having awful pain that meds are not helping. They think that my pump is sitting on a nerve. The only way to fix that is to have the surgery done again, moved and have the possibility of it happening on the other side.
I would recommend this to anyone with chronic pain if you are a canidate for it. It really has given me a piece of my life back. I no longer feel like I am dying. I am able to take my child outside to play and out shopping. I am still living with pain but it is much tolerable. My Lupus still is something I am dealing with daily. But the rare kidney disease is so much better. I am lucky that I have wonderful doctors that have supported me. I was a guinea pig in there office for the pain pump. They knew of how bad the pain had effected me and decided this was my only hope. God bless smart doctors.

If anyone would like information, I would be glad to answer your questions the best I can. Thanks for reading my story. Hopefully I will chat with those of you who share similar situation. I find it is a stress reliever to know there are people out there that are in my same boat. My husband doesn’t understand so it has been a long, hard road alone.


I know exactly what you are talking about..

I had back surgery 4 years ago with no relief.I am in constant pain. I cannot sit or stand for more than 20 minutes at a time because my legs go numb. It’s not too bad if I am sitting down (unless of course I need to go to the bathroom), but if I am standing, all of a sudden I just fall over. Sleeping, that’s a joke. Maybe 1 to 1 and 1/2 hours at a time, before I cannot stand the pain any longer and need to get up. So far, I have been on 15 different medications, with the latest being Methadone and still no relief. The doctors just do not seem to understand what a person is going through. And of course there are those that just plain do not believe you. I would love to see them put up with this for just one week and then tell me that I am wrong about the pain. So far, I have lost a great paying job, a home that I had owned for 20 years (I could not do the maintenance anymore), all of my savings due to having no insurance. There have even been some jackasses that tell me that I have got it made being on Social Security Disability and not having to work. I would gladly trade places with these people.

Women and acetominofen do not mix well

Women who frequently use over-the-counter pain pills may be doing long-term damage to their kidneys.

Researchers found that over a decade, women who took between three and 17 acetaminophen pills weekly increased their risk of kidney problems by 64 percent compared to women who rarely or never used such medications.

Women who regularly took more than that doubled their risks, the study says.

Surveys show that one in five Americans take a top-selling painkiller at least once a week.

Researchers reached a different conclusion about acetaminophen and men.

After tracking nearly 5,000 men for 14 years, they found no kidney decline among those who took over-the-counter pain meds – including acetaminophen – three to four times a week.


ACTIQ is a medication in a unique oral transmucosal delivery system (OTS?). It offers personal pain control by providing pain relief in 15 minutes (though you may not experience full relief for up to 45 minutes after finishing an ACTIQ unit). Actiq is designed to be dissolved slowly in the mouth in a manner to facilitate transmucosal absorption.

Actiq is supplied in six dosage strengths. Each unit is individually wrapped in a child-resistant, protective blister package.

Active Ingredient: Fentanyl citrate C-II

Pregnancy – Category C

Fentanyl has been shown to impair fertility and to have an embryocidal effect with an increase in resorptions in rats when given for a period of 12 to 21 days in doses of 30 mcg/kg IV or 160 mcg/kg subcutaneously.

Actiq Dose
200 mcg, 400 mcg, 600 mcg, 800 mcg, 1200 mcg, 1600 mcg

General considerations: Each
transmucosal unit contains about 2 g of sugar. Frequent consumption of products containing sugar may increase
the risk of dental caries, and dry mouth associated with opioid use may add to
the risk.
Patient counseling:  Diabetic
patients should be advised that each
unit contains about 2 g of sugar. To ensure appropriate oral hygiene, all
patients should be told to consult their dentist.

Manufacturer: Cephalon
Manufacturer’s website: www.cephalon.com
Product website: www.actiq.com


Breakthrough cancer pain in patients with malignancies who are already
receiving and who are tolerant to opioid therapy for their underlying persistent
cancer pain:
200 µg to start; thereafter, closely follow patient
and change dosage level until patient reaches a dose providing adequate
analgesia using a single dosage unit per breakthrough cancer pain episode.
Redosing within a single episode: Until appropriate dose is reached,
patients may need to use an additional unit during a single episode. Start
redosing 15 min after previous unit has been completed (30 min after start
of previous unit. While patient is in titration phase and consuming units
that might be subtherapeutic individually, patient should take to more
than two units for each individual cancer breakthrough pain episode.

Patients considered to be opioid tolerant are taking at least 60
mg/day of morphine, 50 µg/h of transdermal fentanyl, or an equianalgesic
dose of another opioid for at least 1 wk.

Initial prescription: Prescribe an initial titration supply of
six 200-µg units to limit the number of units in the home during
titration; patient should use all units before increasing to a higher dose.

Increasing dose: If more than one unit
is needed per episode during treatment of several consecutive breakthrough
cancer pain episodes, consider an increase in dose. At each new dose during
titration, prescribe six units of the titration dose. Evaluate each
new dose over several episodes of breakthrough cancer pain (generally 1-2
days) to determine whether new dose provides adequate efficacy with acceptable
adverse events. Incidence of side effects is likely to be greater during
initial titration period.

Administration: Immediately before use, open foil package with
scissors. Place unit between cheek and lower gum, occasionally moving drug
matrix from one side to another using handle. Unit should not be chewed;
if chewed or swallowed, lower peak concentration and bioavailability may
occur. Advise patient to consume unit over 15 min; longer or shorter
consumption time may lead to lesser efficacy.

Titration of dosage: Individually titrate to a dose providing
adequate analgesia and minimal side effects. If signs of excessive opioid
effects appear before unit is consumed, remove dosage unit from patient’s
mouth immediately, dispose of unit properly, and decrease subsequent doses.
Patients should record their use of drug over several episodes of breakthrough
cancer pain and review their experience with their physicians.

Maximum daily dose: Once successful dose has been found, limit
consumption to four or less units/day. If consumption increases above this
level, reevaluate dose of long-acting opioid used for persistent cancer

Dosage adjustment: Dosage adjustment of both fentanyl and the
maintenance opioid analgesic may be needed to continue to provide adequate
relief of breakthrough cancer pain (see "Increasing
," above). Consider increasing around-the-clock opioid dose
used for persistent cancer pain in patients who have over four breakthrough
cancer pain episodes daily.

Disposal of units: Advise patients to dispose of completely used
and partially used units. After complete consumption of unit and total
dissolution of matrix, throw handle away in a trash container out of reach
of children. If any drug matrix remains on handle, place handle under hot
running tap water until all of the drug matrix is dissolved, and then dispose
as above. Dispose of handles in the child-resistant container at least
once daily. If patient does not consume the entire unit and remaining drug
cannot be dissolved immediately as above, temporarily store the unit in
the provided child-resistant container until proper disposal is possible.
To dispose of unused units, remove unit from pouch using scissors, hold
unit by handle over the toilet bowl, cut off drug matrix end using wire-cutting
pliers so that it falls into the toilet, and dispose of handle in a place
out of reach of children; then flush toilet twice after 5 units have been
cut and deposited into the toilet. Do not flush entire units, handles,
foil pouches, or carton. If caregivers need more information, instruct
them to call 800/615-0187.

Discontinuation of therapy: A gradual downward titration is recommended
for patients discontinuing opioid therapy; it is not known at what dose
level the opioid may be discontinued without producing signs and symptoms
of abrupt withdrawal.

Patient Monitoring

Patient instructions: Question patients or caregivers of the
presence of children in the home on a full-time or visiting basis. Advise
patients and caregivers that this dosage form contains a medicine in an
amount that could be fatal to a child; partially consumed units pose a
particular risk. Instruct patients and caregivers to keep all units out
of the reach of children, and to discard opened units properly in a secured
container. Supply patients and providers with the Actiq Welcome Kit, which
contains educational materials, safe storage containers, and a patient
safety video; give patients the opportunity to discuss the video. For more
information on these materials, call 800/615-0187. Advise patients to consult
their dentist to ensure appropriate oral hygiene. Inform diabetics that each
unit contains about 2 g of sugar.

General Considerations

Hypersensitivity: Contraindicated in patients hypersensitive
to fentanyl or any component.

Inappropriate uses: Because of risk of life-threatening hypoventilation
at any dose in patients not taking chronic opiates, drug is contraindicated
in managing acute or postoperative pain. Risk of respiratory depression
begins at fentanyl plasma levels of 2 ng/mL in opioid nontolerant individuals;
do not use in opioid nontolerant patients.

Respiratory depression: Clinically significant hypoventilation
may occur; carefully observe patients for symptoms of respiratory depression.
Hypoventilation may occur more readily when opioids are given with other
respiratory depressants. Titrate with caution in patients with chronic
obstructive pulmonary disease or preexisting medical conditions that may
predispose to hypoventilation; normal analgesic doses of opioids may further
decrease respiratory drive to point of respiratory failure.

Ambulatory patients: Caution patients not to engage in potentially
hazardous activities requiring full mental alertness.

Sugar content/dental caries: Each unit contains about 2 g of sugar.
Frequent consumption of products containing sugar may increase risk of dental
caries, and dry mouth associated with opioid use may add to risk.

Renal or hepatic impairment: Use caution because of importance
of the liver and kidney in the metabolism and excretion of drugs and effects
on plasma binding proteins.

Advanced age: Elderly patients are twice as sensitive to effects
of fentanyl as are younger patients. Use caution.

Adverse reactions: Side effects seen are typical of opioids;
adverse events frequently will stop or decrease in intensity with continued
use, as patient is properly titrated. Manage side effects accordingly.

Dependence: Physical dependence usually does not occur until
after several weeks of continued opioid usage; tolerance initially is manifested
by shortened duration of analgesic effect and decreased intensity of analgesia.

Head injuries, increased intracranial pressure: Use extreme caution
in patients who may be particularly susceptible to intracranial effects
of CO2 retention (eg, those with increased intracranial
pressure, impaired consciousness). Opioids may obscure clinical course
of patients with head injury; use only if clinically warranted.

Cardiac disease: Use caution in patients with bradyarrhythmias;
drug may produce bradycardia.

Pregnancy: Use only if expected benefits justify potential fetal
risks (Pregnancy Category C).

Labor and delivery: Not indicated for analgesia during labor
and delivery.

Breast-feeding: Do not use in nursing mothers.

Pediatric use: Appropriate dosing and safety in opioid tolerant
children under 16 yr of age with breakthrough cancer pain not established.

Adverse Reactions
Frequent reactions (incidence of 1% or more) are printed
in italics. Reactions were reported in 254 patients taking any dose
tested. All patients also were taking concomitant opioids, such as sustained-release
morphine or transdermal fentanyl, for persistent cancer pain.

Cardiovascular: Migraine (1% or more); deep
thrombophlebitis, hypertension, and hypotension (< 1%).

Dermatologic: Pruritus, rash, and sweating (2%); alopecia
and exfoliative dermatitis (< 1%).

Digestive: Nausea (23%), vomiting (12%), constipation (4%);
diarrhea, dyspnea, and flatulence (1% or more);
anorexia, eructation,
esophageal stenosis, fecal impaction, gum hemorrhage, mouth ulceration,
and oral moniliasis (< 1%).

Genitourinary: Vaginal hemorrhage, dysuria, hematuria, urinary
incontinence, and urinary tract infection (< 1%).

Neurologic: Dizziness and somnolence (17%), asthenia (9%),
headache (6%), confusion (4%), anxiety (3%), abnormal gait, dry mouth,
nervousness, and vasodilatation (2%), hallucinations, insomnia, abnormal
thinking, vertigo, and hypesthesia (1% or more);
abnormal dreams, urinary
retention, agitation, amnesia, emotional lability, euphoria, incoordination,
decreased libido, neuropathy, paresthesia, and speech disorder (< 1%).

Respiratory: Dyspnea (4%); pharyngitis, increased cough (1%
or more);
hemoptysis, pleural effusion, rhinitis, asthma, hiccup, pneumonia,
respiratory insufficiency, and increased sputum (< 1%).

Miscellaneous: Accidental injury and abnormal vision (2%);
pain, fever, abdominal pain, chills, back pain, chest pain, infection,
peripheral edema, and dehydration (1% or more)
; flu syndrome, abscess,
bone pain, anemia, leukopenia, edema, hypercalcemia, weight loss, myalgia,
pathological fracture, myasthenia, and taste perversion (< 1%).

Drug Interactions

CNS depressants, including alcohol; sedatives, hypnotics, general
anesthetics, phenothiazines, tranquilizers, skeletal muscle relaxants,
sedating antihistamines, other opioids:
Increased CNS depression. Hypoventilation,
hypotension, and profound sedation may occur.

Potent inhibitors of cytochrome P450 3A4 isoform (eg, ketoconazole,
erythromycin, and certain protease inhibitors [eg, ritonavir]):
or prolonged CNS depression. Hypoventilation, hypotension, and profound
sedation may occur. Monitor patients for a change in opioid effects and
adjust dose, if warranted.

MAO inhibitors: Not recommended for use in patients who
have received MAO inhibitors within 14 days, since severe and unpredictable
potentiation by MAO inhibitors reported with use of opioids.