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Old 10-15-2007, 03:15 PM #21
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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. Must be where I get my brains from.
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Old 10-15-2007, 04:17 PM #22
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Default 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
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 10-15-2007, 04:52 PM #23
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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.
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Old 10-15-2007, 05:04 PM #24
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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.
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Old 10-15-2007, 05:22 PM #25
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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. 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.
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Old 10-15-2007, 06:31 PM #26
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Cyclelops, a doctor has recommended spinal nerve blocks for me. why do you regret having them?
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Old 10-15-2007, 06:43 PM #27
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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.
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Old 10-20-2007, 06:56 PM #28
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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.

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Old 10-20-2007, 07:21 PM #29
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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.

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Old 10-20-2007, 07:58 PM #30
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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!
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