A caution
 

I realize that it is both unnecessary and redundant to caution forum members about meds and SE's but I saw this info just recently and thought it is worth a post. If it's a post I missed then I apologize in advance for duplicative clutter but remember I'm old and I'm slow.

The link below is a pretty fair synopsis of the current state of affairs re: the FDA and Lilly re: the claims made for Cymbalta (Duloxetine) and nerve pain, specifically the effectiveness and the potential for SE's. I'm sure there are other links too and there probably will be follow-up to this in the future.

http://www.newsinferno.com/archives/1877#more-1877

alkymst

we always get new members and people that are new to the internet. this is a great post. :)

yes...
 

Thank you for posting.

Lilly has done this repeatedly over the years.

1) Oraflex (concealed liver toxicity until many died--drug taken off the market)

2) Prozac--- studies concealed that severe agitation caused by Prozac was hidden by giving Valium during the studies. This agitation has been considered as the cause of violence and suicide that involved many innocent people.
During a class action trial, Lilly got together with the plaintiffs' attorneys and made a deal with them. If they did NOT bring up Oraflex malfeasance, Lilly would pay them anyway, if they lost. Which they did. The media reported that this trial was in favor of Lilly. But in reality the judge found out and he took this to the supreme court in his state and had it overturned. The media conveniently did not report on that. You figure that one out.

3) Zyprexa--- study physician shredded documents showing dangerous drug reactions to the drug during studies including death. (this was revealed on Cafepharma.com) Lilly continues to take the heat for Zyprexa and its link to diabetes which it knew and concealed from doctors and patients.

4) Cymbalta--- a normal study participant died by suicide on Lilly property during this trial, and they hushed it up. Also older females had high death suicide death rates when studied for Cymbalta and bladder dysfunction.

If you go to www.cafepharma.com and read the boards there, you can see what Lilly's own sales force thinks of the company. They call it WeLie Lilly
(for Eli Lilly).

I wouldn't believe anything Lilly says anymore. Their awful track record goes back more than 20 yrs.

Thanks for posting tho! It is always interesting to get the most recent dirt on the liars!

Boy, that site is something else... I could hardly believe some of the postings various employees put up about their own companies... This gives trashing a whole new meaning... :)

Cathie

yeah, Cathie...
 

Anyone looking for some new epithets to throw around, will find plenty
that the drug salespeople use...at that site. It can be a real eye opener. Sheesh!

I remember the old days, when drug salespeople were either pharmacists or doctors. The bar is now so low, they won't even hire pharmacists. I know a great guy who they would not even interview because he was a professional.
I think those days are gone, because pharmacists and doctors resisted lying to their colleagues!

Well, I have noticed that you do have to have certain qualifications to be a drug rep these days, but they aren't educational or intellectual....

great site
 

thank you for posting it. The stuff on Gardasil was especially worrisome.

Beware the vaccines....
 

all of them have trade offs!

Good stuff! Caution and Buyer Beware?
 

Rules for governing agencies change, by law, dollars to actually implement things doesn't necessarily. Having been a long time gummint employee working at the middle/lower end of the food chain I can assure you that YOUR frustrations as 'beneficiaries' or not of gummint mandates is one of being between a rock and hard place. And any and all efforts to EXECUTE a good gummint agencies' missions is hard as there is so much to do and the bucks go so far. That is like any business, made worse by the fact that is a SERVICE, one for which lots of efforts can show little result in the ends.

I myself read all my medications' prescribing information sheets every six months...I find that the 'updates' and changes for side effects are in/on the the paper before the docs would ever know about it [probably from very BROAD news coverage or lawsuits] I have found SEVEN changes regarding my 5 main meds s/e's updates in the last year--some of them major.

I get very IRKED when folks say WHY DIDN"T my DOC TELL ME? Umm, you sure he didn't or at least try to? OR maybe he assumed you would plain old KNOW...Or is lazy, or is just too busy. Some docs are very, VERY good about this, others well substantially slack. BUT, IN MY CASE? My docs KNOW I want that sample pak and unless it's a desparately needed anti-biotic I am NOT gonna start it on a Thursday or Friday...and I will be on their doorstep IF I have any reactions....I am not gonna waste a 90 day supply of something that could kill me or makes other things worse than they are.

Sorry, but I grew up Loving Dr Kildare and Marcus Welby [my docs as a kid were like that]. Docs aren't like that now, nor can or should they be. But, I'm no doormat either...What was the line from the '70's? QUESTION ALL AUTHORITY....? Well docs can't have it absolutely their way anymore, they run businesses and we are CUSTOMERS. Keep an honest business relationship and you mite get somewhere? - j

PS I think I've incorporated a lot of thoughts from lots of threads in these comments...thanks for all of your patiences.

PPS I noticed that the agressive mis-marketing of Neurontin in 2002-04 wasn't included[as a true PN med was false at that time-it was discovered to work accidentally]..that's since [sort of] been addressed but that was one true DIRECT MIS-REPRESENTATION OF a product if ever...No wonder lawyers sponsor so many ads for lawsuits? Jumping the gun for 'market edge', over safety seems to be the primary driver of drug mfrs and research...Cut out the advertising, do the testing and let the results speak for themselves! Beauty is, as it does. Wishful thinking unless lots of things are changed for sure?

MrsD: Tradeoffs?

Cathie

To: Dakota (Susan).

Is this why, every time I am at the doctor's office, the pharmaceutical rep who walks in the door, is built like Pamela Anderson Lee, with legs like Rachel Welch? I have never, never seen an over 30, overweight, not beautiful, pharmaceuticl rep.

Is this just my imagination?? And don't forget, I go to lots of doctor's offices, Cornell Medical Center, in NYC. LOADS of Dr's office.

Every single pharma rep could be a movie star!!!

Wow, I should have gone into the business when I was 25. I used to look like Elizabeth Taylor!!! lol

Forteo/Lilly
 

Forteo (teriparatide) is made by Lilly.

My neuropathy has advanced more in the past 2 months than in the past 5 years. Actually, it was stable for 5 years.

The only thing new is the Forteo. And the high Calcium that goes with it.
I've googled and searched and found nothing linking the two.

I just went to medwatch and filed a report. I figure if no one tells the FDA what symptoms they've developed after new meds, no one will ever know. I really doubt my bone doc is going to. He's got a factory; I can't even get a reply from the nurse.I've taken to faxing her notes with my blood tests and symptoms, and even that gets nothing.

Tomorrow I see my neuro because of the worsening of the neuropathy. But the thing I really want him to do is call the bone guy. He's treating hundreds of women; he SHOULD know.

Yes, Melody. You should have been a drug rep, because they make a ton of money and have a HUGE expense account for entertaining doctors.

So now, I'm just a 60 year old broad????

Shoulda been a rep. Oh well

lol

more....
 

Here is a website that shares the FDA adverse reactions reported.

This is the Cymbalta page:
http://www.patientsville.com/medication/cymbalta.htm

Thanks for that site, Mrs. D. Forteo isn't even listed. I've reached the bone guy---his nurse says forteo does not cause neuropathy or high cholesterol. And no, they do not file medwatch reports themselves, for instance to let FDA know that at least one person on forteo has neuro symptoms.

of course Forteo is listed...
 

I posted that to you on another thread... and some of the reports listed low mag as result.

Here it is again, since you missed it:

http://www.patientsville.com/medicat...de_effects.htm
In fact there are 2186 negative reports on there.

Doctors typically hesitate to report anything.... they think they will be on record and open to liability.

Well, this is one drug, I think I will skip...

Cathie
Thank you for posting this LizaJane. I have an appointment w/Bone and Mineral Metabolism coming up.

Don't forget to call and report new
 

side effects to the Drug Company! The FDA watches what they get from the mfrs customer contacts and matches it to direct calls they get....
Also mfrs...are very up-to date about compiling stats of new s/e's w/all sorts of other meds.. they may know more about it than you think...Check out Cancer Bulletin Boards as many there have PN due to Chemo and are on Forteo as well.. Bet you will find good stuff!

Clinical trials do not have folks such as us --we who take a slew of meds..It takes we the 'beneficiaries' of our phamacy menus to report and report to all med mfrs that the addition of ONE med to our 'coctails' has set off a chain of reactions.

hope this is useful - j

wow
 

That's a great site. Is that information pulled from the FDA under the freedom of information act, or do they collect it themselves; do you know.

You use the edit tab on your browser to search on a word on a page, so I entered "paraesthesia" and searched. There were a good number of reports, but they were so non-specific, it was hard to know if they applied. Some of the numbness I found might have been in patients with strokes. This site seems to use patient reports, so the language is broad. "Pain in extremity". You don't knw if it's neuropathic or a broken bone! Anyway, most of those patieints are much much older than I am--70s to 90s, and it's hard to tell.

Thanks for posting that Alkemyst...I know I spelled your screen name wrong....but my hands kill today and I just cant go back and look it up to spell it right.....

I just got my copay totals...and one doc insisted that I try Cymbalta, not once but twice, after I told him that SSRI type drugs end me up in the ER...anyway, for one daily dose, of 20mg....$495 for the month!!! Now if I had to pay that myself, I would have told them where to put that bottle of meds.

I took a total of 3 pills and was sicker than a dog...so look at the money wasted!!! Luckily I did not require a trip to the ER, as I had diazepam to offset the problems I had....but think if you added another $2000 to that for ER fees, IV, meds for puking and pain in the ER.

I am really sick of the pharmaceutical industry. Zyrexa is another big problem...they tout these drugs for everything....snake oil sellers.

Taking an SSRI is like putting your brain in a bucket of serotonin.

There is absolutely no good science behind any of this. They invent diseases so they can apply old drugs for 'new diseases'. Elavil or amitriptyline is another good example. It is highly anticholinergic.

Zyprexa is a major dopamine antagonist.

I take a dopamine Agonist...now I see they are selling that on TV too...Restless Leg is not a disease....it is a symptom. Peripeheral Neuropathy is not a disease-it is a symptom. Fibromyalgia is a fancy name for 'you have muscle pain and we are too cheap to do an epidermal nerve biopsy' or 'you really have something wrong with you but, good luck, we have to do what the insurance companies mandate and you are not getting any more tests until you come back here with some concrete evidence that YOU found yourself...oh, and just describe the symptoms---if you tell me you might have the disease, well, then, you are a hypochondriac."

I had a rheumatologist tell me...with NO blood tests and NO history, that I had fibromyalgia. That when I have small fiber neuropathy by biopsy, and a proven history of Lyme with titer and EM rash and he KNEW that!!!! Two weeks later I had an ANA elisa that was thru the roof....but those are 'non-specific'.

You will only be diagnosed with an autoimmune disease if you have blood markers. Now they are finding neurological ones that regular rheumies do not have a clue about...

And, honestly, I am totally unsure if I was diagnosed with any autoimmune stuff, if I would take those meds either. IVIG is risky, but I would sure make an argument for that over the other stuff....(I say that, but I have not gotten any relief from steroids, which probably makes a good case for a non-autoimmune cause. My thought is genetics in my case. I am likey a mutant of some type. I say that with great affection for myself and tongue in cheek, folks.)

I have on several occassions brought up the Cytochrome P450 chart. They update it often....I know it requires a bit of chemistry and all drugs are listed as generics, but, please take a look at what interacts with what...and new isn't always good.

A lot of adverse reactions could be avoided if we were all tested prior to treatment with many of the liver metabolized drugs. We have the technology to do genetic testing to see who tolerates what.

Most people do not report adverse effects either, we just stop taking the drug.

My opinion is Cymbalta is reformulated Prozac, and I for one, get horrible road rage, punch people in the nose reactions to those drugs....plus I get migrainous headaches, muscle aches, hot flashes, throw up sick on them...to think 10 years ago....they gave me zoloft with amitriptyline!!!!! Now that is malpractice.

Well, I am back to my genealogy studies....I am trying to figure out how my great grandfather x 6 can be that on both sides of the chart-that makes him both maternal and paternal for that lineage.:eek: Must be where I get my brains from.

cycleops
 

People get quite jazzed up the first week on any SSRI--they can feel anxious, restless, agitated. A benzo works wonders for this, and then it's gone by the second week. Perhaps that's what you experience?

Also, some people are slow metabolizers and react strongly to almost all meds. One way of showing a doctor that it's physical and not psychiatric that you have big reactions is to have your P450 enzyme system typed for drug metabolism. It's a routine quest lab now. It's cytochrome P450 2C19 and 2D6 that they run. Maybe more, but those I've found on the quest site. But getting those typed would cover the Prozac, benzos and Cymbalta.

2C19:

Proton Pump Inhibitors:
lansoprazole
omeprazole2
pantoprazole
rabeprazole
E-3810

Anti-epileptics:
diazepam=>Nor
phenytoin(O)
S-mephenytoin1
phenobarbitone

amitriptyline
carisoprodol
citalopram Celexa
chloramphenicol
clomipramine
cyclophosphamide
hexobarbital
imipramine N-DeME
indomethacin
R-mephobarbital
moclobemide
nelfinavir
nilutamide
primidone
progesterone
proguanil
propranolol
teniposide
R-warfarin=>8-

2D6

Beta Blockers:
carvedilol
S-metoprolol
propafenone
timolol

Antidepressants:
amitriptyline
clomipramine
desipramine
imipramine
paroxetine

Antipsychotics:
haloperidol
perphenazine
risperidone=>9OH
thioridazine
zuclopenthixol

alprenolol
amphetamine
aripiprazole
atomoxetine
bufuralol1
chlorpheniramine
chlorpromazine
codeine (=>O-desMe)
debrisoquine2
dexfenfluramine
dextromethorphan1
duloxetine (Cymbalta)
encainide
flecainide
fluoxetine
fluvoxamine
lidocaine
metoclopramide
methoxyamphetamine
mexilletine
minaprine
nebivolol
nortriptyline
ondansetron
oxycodone
perhexiline
phenacetin
phenformin
promethazine
propranolol
sparteine
tamoxifen
tramadol
venlafaxine Effexor

Nope. Been on all of them over 10 years....Tramadol landed me in the ER and cost a CT scan. I was on Zoloft for years, and they kept treating the side effects of that with new drugs. Until they figured out....I couldnt take them.


10% of the Caucasian population can not metabolize SSRI's due to a polymorphism of 2D6. Some people have other cytochromes besides 2D6 that kick in to metabolize. If you notice on the chart, amitriptyline is metabolized by quite a few and inhibits quite a few, as do some of the SSRIs.


My neuro didn't encourage using them. A different doc did. What a waste of money. If that had to come out of my pocket, I would be really mad. I should have been given a free sample. Why not? Do they give free samples of Cymbalta? They give them for everything else. I should have asked and from now on, I am asking for free samples before I waste other premium payers money like that!

If it works for somebody, then fine, however, the SSRIs are tricky drugs. Yes we should be typed for 2D6, but most people are not typed. It seems they prefer the try it and see approach.

At one time I was able to take Welbutrrin and Lexapro, those function a bit differently the -etine drugs.

It seems as this disease process (what ever it really is besides the mystery of idiopathicy) progresses, there is less and less I can tolerate. That makes me a lot more reluctant to experiment. (I didn't go to Woodstock either, but, no I am not conservative.)

I am curious about Rozerum for sleep....anybody taken that? That one is kind of scary, but the commercials are darn cute...I like the groundhog.

Hi. I'm on Cymbalta now 60mg at night. At first I was so sick from the nausea but it passed after a few weeks. Its done nothing for my pain or mental but no other drugs have either. I pay out of pocket for all my meds and for me it costs I think 139 a month. I have not taken that med for sleep the only med that helped me for sleep was trazedone but it wore off after awhile and even a dose for a horse my psych used to say kept me up but it works for some. Good luck and I understand the med. I have been on many different meds for sleep,anxiety,ocd,nerve,depression, and none worked for me. All its done is spent thousands of dollars.

My copays cost that much per month. My Cymbalta was $495 and it was duloxetine, the generic, if that is possible. I am on a brand name HRT which I have to pay $35 for and even tho my Ambien is now generic, zolpidem, I still have to pay the brand name copay of $35. I use Darvocette for pain and split one 10 mg Vicodin per day, and take Mirapex for RLS....

I had the worst episode of itching, and I can't tell you how hard I searched for the bedbugs....it was the neuropathy, and Lyrica worked to stop the itching...only thing is after a few weeks it builds up and I can't find my way around a town of 6,000 people. Plus insurance won't pay for Lyrica...just Neurontin....tried that-it kept me up-go figure-and man was I grumpy....not a good thing.

Not one SSRI has done anything for me than make me get projectile vomitting, severe headache, diarrhea and almost a disorderly conduct charge.:D That was a few years back.;) My special needs adopted daughter who was 7 or so, accidentally opened her car door into a lady's parked car and she had a hissy fit-no damage-not even a scratch....I used a naughty word at her and she threatened to call the police. I told her if she couldn't see the child was handicapped than she was a ...... idiot. I stopped my zoloft shortly after that. I have been much more agreeable in the decade that has ensued.

I have the distinction of being up for 3 days straight from Chloral Hydrate.

If it is anticholinergic, antidopaminergic, I simply can't take it, no matter what the chemical family it is from. That is the first thing I check, is it anticholinergic or antidopaminergic, if not, then I agree to try it....however, all SSRI's are antidopaminergic in general.

I can take a 'codone', only when it is early in the day....otherwise, I am up all night.

I get 3-4 hours sleep off Ambien, that is good enough....

I do not understand why they advertise prescription drugs on TV....shouldn't the docs make those decisions...not me, based on my affection for a groundhog??

I have to accept I am wired differently and there are simply no good answers and that isn't any drug company's fault or doctors fault. It is me. That said, I do think that people need to be very careful of what they take. Not all this stuff is good for people, neither are all procedures.

I had two spinal nerve root blocks and that ended up being the stupidest thing I ever did. I regret it terribly. Water under the bridge at this point. Life goes on.

Gotta go cook some supper. Thanks for the empathy.

Cyclelops, a doctor has recommended spinal nerve blocks for me. why do you regret having them?

I do think your right about the meds and how everyone is different. I so understand your frustration. When I first started the meds for neuropathy I could barely lift my head from the side effects but did nothing for the pain. I have always been weird. Even in the hospital the meds did nothing or just kept me in a weird state. That is why the doc has me thinking of the spinal cord stimulator. I think they advertise so the patient will ask for it. I know many people who go to their psych and I even have and ask to try a certain med that I have heard about. I do agree though but I know docs often push meds they are being sold by the reps.Well hope you had a nice dinner. I'm "special" too when it comes to meds. I wish I could be special in a different way.

A certain SSRI (can't mention the name as there was a suit involved) caused me permanent damage 10 years ago. I don't know a thing about genetics, but I suspect I'm one of those people who just shouldn't mess with their serotonin levels. I have strong reactions to the majority of meds that affect one's brain.

I did try Rozerem right after it came out. Believe it or not, it had no effect on me whatsoever. For sleep, Lunesta or Sonata work best, but my insurance will not cover them. So for me, it's zolpidem or nothing.

fanfaire
:cool:

Isn't that interesting. Lunesta did absolutely nothing for me. Ambien is fine, but I can't afford it. So I take generic xanax, just at bedtime. So does Alan, but he takes it for his neuropathy. I just take it to sleep. Works just fine.

I've never been a sleeper. I drove my mother crazy as a child. She always said "no wonder I didn't want any more children after you, you never slept." I don't remember any of this. I do remember not being a good sleeper. I used to get up every few hours. Always. Got worse after I became a mother. Never slept.

Then I had my first experience with Ambien about 10 years ago. What a gift.

Haven't been on sleeping meds for 10 years though. Only been on them for about 3 or 4. If I didn't take them, I would be up all night. I did a sleep study at a sleep apnea center. Of course I was diagnosed with Sleep Apnea and got the machine. It's in my closet. I looked like the creature from the black lagoon with that thing on my face. So, since I lost most of my weight, Alan has not complained about my snoring. I rub VICKS on my chest and I take my generic xanax at !! PM.

Takes about an hour to kick in but I sleep just fine.

I wonder about people who can just lay their head down on a pillow and sleep through the night. I don't know how they do that (without meds I mean).

Oh, Alan just came home from the health fair in NYC. I'm posting a thread on that.

mel

Melody? Both you and Alan just plain
 

COUNT YOUR BLESSINGS!
The rest of us? Well, we have to play the ' pharmacy game'...Meds prescribed by docs not totally informed or even concerned about the actions/interactions/reactions of the other meds we take to survive.

It is not a fun game to play as the potential and actual damages are not either documented or yet discovered. It is the price we all play in trying to aleve or allay our pain until another day. Never has it been conveyed to us the 'beneficiaries' of such medications that the LATER price to pay would or could be soo great. Permanent disability because of a pharmacy or medical mis-prescribing is more common that we would even care to want to know. It's a scary but real prospect.

I wish we as patients had many more expert options to explore about such issues....there are so few pharmacological medical experts in this country that it really scares me about our own futures and prosepects.

I only hope that there is something better on the horizon? I don't know about anyone else, but I sure would like to see someone in a white hat riding over the hill coming to my rescue! - j

PS Liza Jane? Really good list!

How does one get the right testing?
 

Cyclops - you had PM'd me a while back about the testing for drugs/metabolism - and I printed it out and asked my doc about it... he refused to do the testing because he said it was obivious what I had reactions too (so far)... etc.... My question - those are great tests - how does one who cannot order their own tests (and sure cant afford to pay for them outside of insurance world) get them done? Being a guinie pig - as many of us know - is not pleasant and I would love to be able to show list to docs?????? Anyone with suggestions?:confused:

I would suspect any doctor who did not help with this, as being ignorant.

Here is another site with the ethnic breakdown of the various enzyme systems:
http://www.dnadirect.com/patients/te...metabolism.jsp

Don't think all doctors understand liver metabolism. I would venture to say,
Kmeb's does not. He won't entertain the thought because it would show his ignorance.

The new liver metabolism test is expensive, and I don't think it is covered by all insurances.

How to order a test:
http://www.dnadirect.com/patients/te...sponse/how.jsp
Done with a cheek/buccal swab.

mrs D
 

Thanks for the links.... I can glance down and see drugs all in a clump that Ive had real bad reactions too - so will try again about the docs..

LA is a very strange city - the very good docs seem to be clumped at one or two hospitals - which are geographically far from me... and for ongoing care its critical i ifnd them close by.. a move coming up - something to consider....

Hate to say but we have many sub-par docs out here - checking their credentials many many went to Carribean med schools and have less then impressive residencies.... and also, we have two med schools - one very good (and far away right now) - but those docs tend to flee when they graduate - and another - which is NOT very good - they tend to stay..... every once in a while a caring - very good one will pop up - I actually had an urgent care doc say to me (I was not there for my stomach) but he knew I had neuropathy - just listening to it from across the room - diagnosis gastroparesis - he's a jewel - and I was hoping to become his patient - leaving the practice in two weeks and they wont fess up where hes going I'm going to make some calls and find out where if possible - young -eager- intelligent - and wants to learn....

Anyway, will look further into this testing - may save some trips to er in the future and a lot of misery!:)