new meds to try - worried...

[- jon -]

i'm supposed to pickup samples of both prevacid and protonix tomorrow (see my other thread for more background)

so tonight i did some research into both of them - and, sheesh, i'm more afraid of trying them than coping as best i can with what aciphex may be doing to me already

PREVACID
http://health.yahoo.com/health/drugs/pre1348/1.html

PROTONIX
http://health.yahoo.com/health/drugs/pro1547/1.html


prevacid has a whole boatload of possible side effects - especially concerning to me is the mental aspect - abnormal thinking!! hallucinations!! NO THANKS!!!! the wierd dreams that aciphex gives me are bad enough, at least i only have those while i'm home safe in bed

protonix on the other hand doesn't list many possible side effects, BUT it says that it is NOT RECOMMENDED FOR LONGTERM USE!!!!!! that it hasn't been tested for long term use yet - SO maybe that is why it doesn't have all the side effects detailed yet??? it won't be any good to me anyway if it is not good for long term use, as i'm stuck on PPIs FOREVER according to the drs

anyone care to share their personal experiences with either of these drugs? i realize of course all of us will have different experiences in our own bodies but i'd like to know what others here have gone through

thanks,

- jon -

[af]

Just a thought: if you read all of the side effects on almost any drug, you would end up taking nothing. They have to list so many side effects that are VERY rare. I am a nurse, and half the time I don't even read them.

If the doctor thinks I can take it safely, then I give it a try, and evaluate it based on how it works with MY body. If it works ok with me, then that's good enough for me.

[- jon -]

Originally posted by af
Just a thought: if you read all of the side effects on almost any drug, you would end up taking nothing. They have to list so many side effects that are VERY rare. I am a nurse, and half the time I don't even read them.

If the doctor thinks I can take it safely, then I give it a try, and evaluate it based on how it works with MY body. If it works ok with me, then that's good enough for me.

yes you are right & i agree with you in principle

however, experience has taught me with the PPIs i've been on so far (nexium & aciphex), that since i've had several of the known "rare" side effects that are documented for those drugs, i also believe that i likely have some of the "rare" ones for the other PPIs as well (which ones? how bad? i dunno)

and i am ESPECIALLY wary of something listed for prevacid of "abnormal dreams + thoughts", when i'm already having the similar "abnormal dreams" documented for a different PPI

i general, my (& my family members') experiences with dr's has also taught me that UNLESS you the patient pay attention, ask questions, keep track of your "care", the doctors in my experience could care less & for the most part don't even know what they are doing (they are not God of course)....he's just giving me some pills & doesn't have the slightest idea what could/could not happen...i won't bore you with details or family history of dr problems that has led me to feel this way

and although it may not sound like it, i actually LIKE my family dr - he is one of the "best" i've had in awhile

thanks for the feedback,

- jon -

[Dante]

Hi Jon,

I can give you my experience with Prevacid. I took 30mg a day for about 3 months and experienced no side effects at all, not even a headache. However, after three months it stopped working and I switched to Prilosec. The only side effect I have from that is back pain, which was only really bad when I was taking 80mg day (twice the "recommended" max dose). I highly recommend Prevacid though because of its lack of side effects on my body and its relative safeness (been in use since 1995 or earlier I think). I was given Protonix to try but never did because of its nervous system side effects that I've heard people complain about. I know these are rare, but I deemed Prevacid safer to take, IMHO.

-Dante

[TomCarv]

Originally posted by - jon -
it won't be any good to me anyway if it is not good for long term use, as i'm stuck on PPIs FOREVER according to the drs



Hi Jon,

Have they even considered any of the procedures - Endocinch, Enterex, Fundo??? Why are you stuck on PPI's Forever???

Be glad that it's just samples instead of regular prescriptions!!!

My personal experience: Protonix did NOTHING, didn't even slow down my reflux!! I used Prevacid for about 5 Years after the Prilosec stopped working and had ZERO side-effects!! Especially NO HEADACHES which I had daily with the Prilosec and no Bloat that I had with the Prilosec.

So, try them both for however long the samples last and then get a prescription for whichever one that gives you the best results with the least side-effects!!

Also, if you haven't had all the presurgery tests: i.e. Scope, Manometry, PH Monitor, get them and see if you are a candidate for Surgery and maybe you can get off the DAMN things!!!

Good Luck and keep us posted!! :)

Prayers,

Tom

[- jon -]

Originally posted by TomCarv

Have they even considered any of the procedures - Endocinch, Enterex, Fundo??? Why are you stuck on PPI's Forever???

Also, if you haven't had all the presurgery tests: i.e. Scope, Manometry, PH Monitor, get them and see if you are a candidate for Surgery and maybe you can get off the DAMN things!!!



i've had an endoscopy, but not the other tests (yet)

last fall the GI doc told me that i should just take the meds rather than think about any surgical approaches, that there were too many downsides/risks to the surgeries as opposed to just taking the meds

he told me that i had a hiatal hernia which could, or could not, be the cause of my problem but did not get into other tests/plans of "attack"

at this point i am a bit unhappy on meds but am "stuck" on them for now chiefly because my health insurance just ran out & i don't see how i could afford to pay for an operation and all that that could entail with possible complications etc....so it's meds for now (which are going to cost me a ton without insurance btw)

perhaps when i get my insurance straightened out i could ask about the surgical options in my case

thanks for all the response :)

- jon -

[TomCarv]

Hi Jon,

I can relate to the Ins. probs!!! So, did the doc (Hopefully) give you enough samples to last a while???

If you ask almost anybody on the board, they will probably give you the same answer: What are GI docs most interested in??

Answer: Keeping the patients on Meds, so they have have a constant cash-flow!!! You get a Surgery (Without Complications) that relieves your symptoms, and they lose a "Cash Cow"!! Add it up, $150 per month x 12 months = $1800 per year x however many years you're on the PPIs - versus around 6 - 12 thou for the Fundo!!

Ain't Life with GERD Grand??? NOT!!! Hang in there Bud, You Are NOT Alone!!! :)

Prayers,

Tom

[silver]

Jon, I dont think that there is any PPI that is safe to take long term. If you read the links that you provided carefully, neither of them should be taken long term. So why do you think prevacid can?

I've been taking pantoloc "protonix" for 4 years now with no problems. I did take a 5 months break from it to see if I could handle things with changing my diet and taking the odd OTC zantac but it didnt work. So I am now back on pantoloc.

I dont understand any of these PPI info, as they all state that they should be taken for up to 8 weeks, then yet doctors leave us on this stuff and dont offer anything else.

I too am frustrated with this condition :(

[- jon -]

Originally posted by TomCarv

I can relate to the Ins. probs!!! So, did the doc (Hopefully) give you enough samples to last a while???



that is another frustrating thing

i went to the dr. office & picked up the samples of PROTONIX and PREVACID, & there are only 1 week of samples there for each of them

yet, as far as i understand, it should take at least a week (or more) for the aciphex side effects to possibly recede

so i thought i needed to try something else for more like 2-3 weeks, not just one week, but i'm not a dr.





If you ask almost anybody on the board, they will probably give you the same answer: What are GI docs most interested in??

Answer: Keeping the patients on Meds, so they have have a constant cash-flow!!! You get a Surgery (Without Complications) that relieves your symptoms, and they lose a "Cash Cow"!! Add it up, $150 per month x 12 months = $1800 per year x however many years you're on the PPIs - versus around 6 - 12 thou for the Fundo!!

Ain't Life with GERD Grand??? NOT!!! Hang in there Bud, You Are NOT Alone!!! :)




thanks tom

i'm afraid your $$ reasoning may be right, but i think a bigger part of it is that DR's don't really give a damn about our health, what's best for us, etc, and instead just want to give us anything to get us OUT OF THEIR OFFICE and move on to the next patient


at this point though i am doing a flip-flop, & i have decided to NOT risk switching to either of the other PPIs until i get my health insurance problems resolved - i really feel isolated/no support really from the dr., and the last thing i need is some unanticipated bad drug reaction when i don't even have health insurance

at least with aciphex i know how my body is reacting (for now anyway)...although i feel like i am poisoning myself in slow degrees

yep, GERD is certainly "grand"! could be alot worse though i'm sure

regards,

- jon -

[- jon -]

Originally posted by silver
Jon, I dont think that there is any PPI that is safe to take long term. If you read the links that you provided carefully, neither of them should be taken long term. So why do you think prevacid can?

I've been taking pantoloc "protonix" for 4 years now with no problems. I did take a 5 months break from it to see if I could handle things with changing my diet and taking the odd OTC zantac but it didnt work. So I am now back on pantoloc.

I dont understand any of these PPI info, as they all state that they should be taken for up to 8 weeks, then yet doctors leave us on this stuff and dont offer anything else.

I too am frustrated with this condition :(


yep, i agree with you 100%

they tell us to stay on these drugs "forever", yet in reality there are NO long-term safety studies even done on any of these, and none recommended for long term use AFAIK....some of these meds haven't even been around that long to know for sure what problems can result from taking them longterm

i DID ask my GI doctor this very question when i have an audience with him last fall to discuss my endoscopy - "how long was it safe to stay on aciphex/a PPI?"

his response was a smiley wave of his hand adding "don't worry about it, when the first PPI came out we were very concerned about long term effects and monitoring patient's every week with various tests but nothing bad ever happened" (or something like that)

if i live long enough, i would not be surprised in the least to hear of some of these drugs called off the market after 5-10 years or something because of something "unforeseen" happening....remember "SELDANE"? it was supposed to be the best allergy drug ever...until people started dying from it...

not much we can do i guess but cope as best we can with the here & now & not worry too much about it...still a source of frustration that we all share i guess

- jon -

[TomCarv]

Originally posted by - jon -
that is another frustrating thing i went to the dr. office & picked up the samples of PROTONIX and PREVACID, & there are only 1 week of samples there for each of them

yet, as far as i understand, it should take at least a week (or more) for the aciphex side effects to possibly recede

so i thought i needed to try something else for more like 2-3 weeks, not just one week, but i'm not a dr.


Hi Jon,

You've got to be kidding me!!! ONE WEEK??? When my doc gave me PPI samples, he gave me at least a MONTH'S worth!!! I know you don't want to hear this with your Ins. situation, but if I were in your shoes, I'd FIRE the jerk and seek a more compassionate doctor!!! Just my opinion!!! Here's hoping you get some relief SOON!!! :)

Prayers,

Tom

[TPN]

I am looking at having to go back on those awful things. My second Nissen surgery look's like its not working and I need to control the acid for the Barrett's. PPI's "compromise the integrity of one's bowel movements" constantly. And I always felt sick on them. I tried Protonix for a long while and them switched to Prilosec, which was a bit better.
Everyone reacts differently, but I know that they inhibit the absorbsion of certain nutrients, interrupts normal digestion, and leaves you open to all sorts of stomach bugs that normally would be killed with stomach acid.
Good luck.

[TomCarv]

Originally posted by TPN
I am looking at having to go back on those awful things. My second Nissen surgery look's like its not working and I need to control the acid for the Barrett's. PPI's "compromise the integrity of one's bowel movements" constantly. And I always felt sick on them. I tried Protonix for a long while and them switched to Prilosec, which was a bit better.
Everyone reacts differently, but I know that they inhibit the absorbsion of certain nutrients, interrupts normal digestion, and leaves you open to all sorts of stomach bugs that normally would be killed with stomach acid.
Good luck.

What Gives TPN??? I thought things were smoothing out. What kind of symptoms are you having??? Dang, you've been through the mill enough already!! Keep us posted!! :)

Prayers,

Tom

[Canyonbabe711]

Protonix made me much worse and I believe may have cause some damage since I didn't have all the problems(nocticable ) before. Nexium worked until it started making me violently nauseated. Dr. says that can't be. Wanna bet. Am going to aks for samples of Prevacid. I am sitting here with a 3 month supply of Protonix and a 3 month supply of Nexium from Canada. About $400 worth of stuff I cannot take.

[TPN]

[QUOTE]Originally posted by TomCarv
[B]What Gives TPN??? I thought things were smoothing out. What kind of symptoms are you having??? Dang, you've been through the mill enough already!! Keep us posted!! :)

Thanks for asking, but (heavy sigh) I am SO frustrated, in despair, and tired of all this.
I am going to see my surgeon today for another follow-up. For the full story, see my posts under Nissen Fundoplication.
Thanks
TPN

[Thistle]

ALL medications have side effects, of course: the hazard of putting foreign stuff in your body. This is why many of us do what we can to find other solutions, such as surgery, as soon as possible, I think.

I'm not crazy about the fact that you plan to try two different meds at once. It typically takes several weeks for any one PPI to kick in. I would think that using two would tremendously complicate things. (But perhaps I'm not understanding the whole picture....)

[TomCarv]

Hi Thistle,

Jon is on Aciphex right now, but it's not working the greatest!! He also doesn't have any insurance at the moment, and the doctor gave him 1 WEEK samples of Prevacid and Protonix to try out. For whatever good one week samples will do!!! You'd think the dummy would give him more than one week's worth of Meds!!!

:)

Prayers,

Tom

[cpadpl]

jon

Just so you know, I'm not some pharm company wacko. I hate meds in my body, and I am now off Nexium and on Zantac to control my heartburn. I'm going to do anything and everything to see if I can hang on with Zantac, but if I can't, I'm going back on Nexium and won't worry if I have to take it the rest of my life (simply because I will have to and there's no sense in worrying).

My only comment is that you are incorrect in that there have been no long term safety studies. There have been controlled AstraZenca studies up to 12 months. In addition, there have been controlled studies not funded by AstraZenca that show Nexium safety for as long as 17 years. I should know, as my father participated in such a study and has been on Prilosec and then Nexium for almost 17 years now.

This is from the American Journal of Gastroenterology, all the way back in 2000 -

"Besides long-term efficacy, this study also supports the long-term safety of continuous therapy with omeprazole. The types of adverse events seen were as one might expect in this elderly study population. No patient required a dose reduction or discontinuation of omeprazole because of an adverse event. Importantly, intestinal metaplasia of the corpus was rare, and no patients developed gastric dysplasia or neoplasm.

This study demonstrates that at least up to 11 yr, the long-term use of omeprazole appears to be safe. Although their relapse rate may have been underestimated by limiting it to endoscopic rather than clinical relapses, the observed low relapse rate along with omeprazole's excellent safety profile suggests that the use of PPIs is a reasonable option for the long-term treatment of GERD, especially in difficult-to-treat patients."

As far as surgery, I have heard the same thing you have. If you think your doctor would ever suggest you take a dangerous drug for the rest of your life so he can rake in extra bucks rather than have you get a 1 time surgery, then you should drop your doctor in any case. I personally plan on listening to my GI doctor at the Mayo clinic, who told my father to keep on with the Prilosec and forget about the surgery.

I know my viewpoint isn't probably the majority here, but as a professional (I'm a CPA), I find the suggestion that GI doctors are only interested in the cash just a little unsettling. That's just like suggesting that I would purposely not do the right thing for a taxpayer so the IRS would keep coming back again and again. That way, money would keep rolling in for me. Indeed, there are dishonest people in all professions. My advice to you would be to pick all important people (wives, friends, doctors, lawyers, accountants) very carefully. I am very close to my GP, and therefore would give his advice much more credence than anything I heard from anyone else.....that's just my $.02.....