Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-17-2007, 05:29 PM #1
InHisHands InHisHands is offline
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Question Lyrica and Neurontin?

Has your Dr. ever put you on both Lyrica and Neurontin? Any benefit seen?

I understand that they are very close to each other, but was wondering if anyone else has taken both at once and why? My Dr. is putting me on Lyrica, as well as continuing the Neurontin.

Thanks.
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Old 04-17-2007, 08:33 PM #2
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Question Sounds odd..

Hi there..
I have just switched from Gabipentin which is also called Neurontin to Lyrica.

I was told to 1/2 my Gabipentin for the first week and to take 75mg of Lyrica a day. Second week no Gabipentin and double the lyrica to 300mg a day. Thats harsh on the reburn but eased off soon enouph as the Lyrica got into my system.

I am on week three and though I noticed alot of burning and zappies the second week it is not as bad this week. But I have some blurred vision (did with Gab too) and more alarming some almost dizyness or disorientation, so doc decided not to upp it though I still have some burning that the Gab was taking care of I guess.

I am sure not a doctor but I was told we taper off one as we upp the other, my doc was very seriouse about this, see what others say here and research Lyrica in google as well.

Hey I just saw an add for Lyrica in the front inside page of a Readers Digest in the docs office today.

Good luck to ya bud, I do feel better generaly than with the gab I think.
Sandra
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Old 04-19-2007, 06:57 AM #3
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Quote:
Originally Posted by InHisHands View Post
Has your Dr. ever put you on both Lyrica and Neurontin? Any benefit seen?

I understand that they are very close to each other, but was wondering if anyone else has taken both at once and why? My Dr. is putting me on Lyrica, as well as continuing the Neurontin.

Thanks.
I believe there is another thread regarding the mix of these two. If it is just to wean off of one and onto the other and for a short period you should be ok - As far as using both together on a regular basis it's not a good idea.

** Just as a note - I had read one time (gosh cant remember where) that Neurontin (Gabipanten) can stay in your system for up to 3 years AFTER you quit taking it.......something to think about.
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Old 04-20-2007, 04:12 PM #4
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Hi IHH,

Sorry you're not doing so well these days - I don't know the answer, sounds very unusual to be taking two types of gabapentin though - but it rings some kind of bell - I'll wrack my brains!

Yes there are a few threads on both Neurontin and Lyrica, you're a good searcher, IHH I know you've probably found them already LOL.

But HubbywRSD, oh dear...sigh... I'm trying to put this as diplomatically as I can - you've done it again! - that information you've given us *again* about how long Neurontin stays in your system is just *wrong* - it stays in the body a matter of hours.....(I believe Lyrica stays in the body significantly longer than Neurontin).

I've asked you before to tell us where you got this info, in my post entitled "Question for HubbywRSD:
http://neurotalk.psychcentral.com/sh...izer#post60861 I don't think you answered it, did you?

In the thread link I just quoted, I put the correct PI sheet info up. We need to be as correct as we can be about this kind of info, or this forum's reputation will quickly be devalued - most of us try to be as accurate as possible. So if you can find the reference, with respect, please could you post it? Just as a rule, if you're not certain about a big factual issue like this, it's better not to post it, ya know?

IHH, I'll dig up what I can, not got too much time though at the moment
Please take care,
all the best
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Old 04-21-2007, 02:10 AM #5
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I think if you're lowering your N dose and starting L then its not so bad, but I'm sure being on both together isn't wise, due to seretonin levels.

The best way to check for sure is to use the drug interaction checker on www.drugs.com Type both in then search for interactions and it will tell you whether there are mild/moderate/severe issues with taking both at once. Of course this comes with a disclaimer and if you aren't sure you should get your doctor to check, but it'll give you an idea on what problems may arise with taking both at once at normal doses (ie not coming down off one while introducing the other)

x Kate
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Old 04-22-2007, 12:49 PM #6
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Hi Kate!

Long time no hear from you - how are you? How are the kids? How's hubby? Are you still trying the ketamine, or was that a permanent glitch you had - I mean, I know it stopped helping, but could you try another infusion at a later date? Perhaps the bod needs a break from it before it'll work for you again. (Yeah, that's the level of my medical knowledge!)

Please post us an update, we miss you, you know!
all the best
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Old 04-24-2007, 06:44 AM #7
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Hi Artist, thanks for asking about me!

I haven't seen a pain doctor in AGES, though not through my choice. After my ketamine infusion in August, that didn't take and I had liver problems with (which were fine at a blood test 2 weeks later) I had a magnesium infusion in October, but didn't get to see my dr. I was sent an appt for mid Jan, which was actually about a week before we were due to move 1200kms away, back to our old town and where my previous rsd dr is (the weather in Melbourne was too rough on me, its more stable and warmer longer up here, north of Sydney). I turned up for that appt to be told they had no record of it! I'd been waiting three months already with no pain relief and was hoping to start on something before moving, or at least get some more breakthru meds. No matter what I said, they couldn't get me in to see him.

Then after moving here in mid Jan, there were big clerical dramas with my referral to this pain dr- they said they hadn't received my referral etc when they had (the pain dr faxed a signed copy back to my gp!), then then dawdled and dawdled and I was constantly ringing them and on their back to at least give me an appt date. I finally got one this week, for the second week of May- which isn't bad considering his usual wait is 3-6 months.

In the meantime my GP (I think you call them PCPs) has been able to put me on MS Contin, as I was only on endep and baclofen and they weren't doing a thing! Its helped somewhat, but is killing my gut in the meantime and I now have to see a specialist about that- it never ends!

I'm up for trying another ketamine infusion- for a long time after that last one I didn't want to have another one ever again. I think because the 2nd one lasted for so long I went into the 3rd one expecting at least a few months. So having to end it early because of liver function levels and having it not even lower pain levels at all, was just shattering. I had to regroup a little I guess before I could look at what to try next and get back on the merry-go-round again. But this dr does them slightly differently to the one I had- instead of 7days at 28mg/hr, it would be 10 days at 40mg/hr, so maybe the difference would help. Otherwise I'll see what else he suggests.

The family are great! Hannah's walking, started at 9 months the little bugger! She says "mumma", "dadda", "hurroh"(for hello), "buh bye" and says "yey" and claps her hands when she walks somewhere! She's definately a mummys girl, very clingy with me! The other kids are SO good with her, and with helping me! I'm very blessed to have great kids!

Hmm, I think I talk too much

I hope all is well with you too!

x Kate
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Old 04-24-2007, 10:53 AM #8
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Quote:
Originally Posted by artist View Post
Hi IHH,

Sorry you're not doing so well these days - I don't know the answer, sounds very unusual to be taking two types of gabapentin though - but it rings some kind of bell - I'll wrack my brains!

Yes there are a few threads on both Neurontin and Lyrica, you're a good searcher, IHH I know you've probably found them already LOL.

But HubbywRSD, oh dear...sigh... I'm trying to put this as diplomatically as I can - you've done it again! - that information you've given us *again* about how long Neurontin stays in your system is just *wrong* - it stays in the body a matter of hours.....(I believe Lyrica stays in the body significantly longer than Neurontin).

I've asked you before to tell us where you got this info, in my post entitled "Question for HubbywRSD:
http://neurotalk.psychcentral.com/sh...izer#post60861 I don't think you answered it, did you?

In the thread link I just quoted, I put the correct PI sheet info up. We need to be as correct as we can be about this kind of info, or this forum's reputation will quickly be devalued - most of us try to be as accurate as possible. So if you can find the reference, with respect, please could you post it? Just as a rule, if you're not certain about a big factual issue like this, it's better not to post it, ya know?

IHH, I'll dig up what I can, not got too much time though at the moment
Please take care,
all the best



Please remember that some of the information I've shared has come from research in 1995 when my husband was 1st affected with RSD - How long ago would that be....12 years? I dont have links that I've saved for that long - some things that I have been pulling from memory, weather they are still posted or listed or not I'm not sure and have to then go out and search out the information again.

As far as the side effects from neurontin:

comment number 14 by: Melinda
October 5th, 2003 at 11:21 am

I took neurontin for a pinched nerve in my leg in 1998. At the time it made me feel terribly confusion and mental unstableness. I told my doctor, It wasn’t helping my pinched nerve but that I felt like it was frying my other nerves. She tried to refer me to a shrink and refused to take me off the neurontin. She thought it was helping my leg and that I just didn’t know what I was talking about. She thought it was a miracle drug.My family insisted that I stop taking it. I did. My thoughts got clearer, however I am affected to this day with confusion,depression,loss of sleep, suicidal thoughts,reaccuring welt like rashes. I had none of these symptoms before taking that evil drug,neurontin.

And there are others....

http://medrants.com/index.php/archives/1319

Then...

Apr 26, 2006
I had a terrible allergic reaction to neurontin. This was peddled to me by my neurologist for Trigeminal Neuralgia. He said it was Off Label use and during the time when it was being blitzed by the drugs manufacturer to cure any kind of woe. My eyes swelled closed, blisters covered my entire body and I still have skin problems some 7 years later. I also had slurred speech and I am not sure how I ever worked during that time I was taking it before the allergic reaction. The dosage was close to 3,000 mgs. a day and he kept saying the literature says I can take you to 4,800 mgs per day. Thank God I lived--no telling what long term damage my body has suffered. I haven't seen my medical record from that time but I truly believe that nothing was written down anywhere regarding the reaction that almost killed me. CYA

or how about this...

Nov 17, 2006
I was prescribed this poison, for chronic pain management, for over two years. Starting with a small dose, I eventually wound up taking 4800mg daily for well over a year. The only thing it helped was Pfizer's bottom line.
My memory is now a hit-and-miss proposition. I have an IQ of 145, but my thought organization is almost nil. Between my bouts of severe depression, and mad rantings and ravings, my wife of 32 years has just about had her fill; she's had all she can stand.
Whoever said that 4800mg was an allowable dose must be employed by Pfizer, or the Doctor that prescribed it. I have a pharmacist friend, for over 30 years, whom I've discussed my treatment and dosage with. His only remarks were "and you're still alive?" and "get a lawyer; you've got a helluva suit against Pfizer and your Doctor.
Any of you ever fell asleep standing up, waking up as you hit the floor? How about while waiting for a light to change, or driving down the road, with no notice? I have, and worse.
Neurontin has it's place in medicine. There are some medical problems out there that make the side effects of Neurontin worth the risk; they are few and far between. Pfizer paid almost 1/2 billion dollars in fines and penalties to the Government. They ADMITTED pushing this poison for numerous off-label uses without FDA approval. In the process, they made billions of dollars in extra profits at the expense of people's health, and lives.
I've not yet attempted suicide; my wife hid my guns when she saw it coming.
Unless someone out there in cyberspace can give me a specific time period, as far as I know, the damage Neurontin does to the brain, and the psyche, is PERMANENT! I've been off the crap since 1999 or 2000. My problems are getting worse, not better. These are things that were non-existent prior to being prescribed this poison.
Does anyone reading this post know an attorney handling these Neurontin claims, either individually or as a class action? It's time for Pfizer, and the Doctor, to pay the Piper.

http://www.topix.net/forum/drug/neur...VGGS3HD16K9Q2P


HWRSD (P.S. - Lost my password for other account so had to make up another....)

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Old 04-24-2007, 11:36 AM #9
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Hey, HWRSD,

Er, no.
all the best.

Last edited by Jomar; 04-25-2007 at 05:47 PM. Reason: removed quoted
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Old 04-24-2007, 05:36 PM #10
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Confused Ok..little confused here (and Long Post Warning. :-/ Sorry folks)

HWRSD,
I have to admit, that I am pretty confused here. I realize that you don't know me, as I have not been posting much since you joined, so I guess that I should introduce myself first, before I say anything else.

Hi. I'm Joselita, AKA Jose, AKA Josie, and probably AKA more things than that. LOL. I have been knocking about with this group for...well...a very long time. I have RSD that started in my right foot, spread up my leg and into my lower back, and then finally (so far "finally" anyway) spread to my right hand/arm/shoulder (last spread was back in...oh...2002ish, I believe? Don't have my med records right here to check, but it has been a while ago). I have had RSD since I was 26, and I am 37 (will be 38 this summer)...so for over 10 years now (got hurt in Feb of the year I was 27. Sorry, but I remember the ages I was better than I do the years, and to go back and count on my fingers trying to figure it all up will just make my head ache right now. LOL). I found these folks...oh...not long after I got my DX, which was....erm....in 1998-9ish? At any rate, my point is that I have been around for a while, and have had RSD for a while, and tried many different things, and am no Newbie to this myself. I am sorry to hear that your Husband has this awful disease. I know how hard it is to be a parent of small children while trying to deal with RSD. I am a single parent of 2 teenagers (now 18 and 19.5 years old...) But they were just small when this came to live with us. 2nd and 3rd grades small. So, my heart goes out to you and your entire family.

Oh...I guess that I should give a warning right about here; I tend to have LONG posts. Doesn't seem to be anything that I can do about that (I have tried...and it just doesn't work). I write like I talk, which evidentially is A LOT! ROFL.

Ok. Now on to my confusion. And, please don't read this in any kind of hostile voice, Ok? I know that things can be read in very different voices then how the writer intended, and I assure you that I do not intend to sound any way hostile or anything like that. Just simply confused.

Where I have gotten confused is at a couple of different places here. The first thing that hit me was; Why so defensive and almost aggressive towards Artists post/question? I looked and looked, and I don't see where she uses the word "liar" or "lie" or anything like that. All I see is her asking for where you found the info about the Neurontin staying in the system for 3 years after it has stopped being taken. It looks like she was being very careful about asking this too. So..I am not sure that I understand why you got so upset? Or, at least why your post sounded so upset?

Next thing that confused me, was all of those other posts that you put up in your response. Pretty much, we have all read very similar things here (or on the original BT site). In fact some of us, myself included, have even suffered from these side effects mentioned. If you look, there are folks that will refer to Neurontin as "Neurotten", and that is for that very reason. But, in none of the things that you put up here, do I see anyone saying anything about the 3 years thing? So, I am confused? Why all of those other things by other people?

Pretty much, I do agree with Artist, in that we have to be very careful about some of the comments that we make about different drugs and treatments that folks talk about here on this site. If you have experience with a certain side effect, then by all means post it! But, if it is super important info like a med staying in the system for years at a time...well....that kind of thing kinda needs to have something that folks can go to, to read about it for themselves too. If that makes any sense?

I understand that you have picked up lots of information along the way, while trying to help your husband figure out what would be the best route for him to go, as far as treatments and meds. I understand that LOTS of research has been done in order for you to try to do that to the best of your ability. But, just like any other research, it kinda needs Cites to help back it up. Otherwise what can happen are some very NOT GOOD things. For example, folks can panic and either refuse to take a med that might very well work for them without really having all of the information that they need to make that kind of decision, or they can stop taking a med out of fear of whatever possibly happening to them(even if they aren't having side effects, or not bad ones, and the med IS helping them), or there can be a HUGE big argument pop up on here between the folks that a certain med or treatment helps, and those that it does not. Believe me, I have seen that happen more times then I like to think about. It is awful, and I dont like seeing all of the folks that I care about feeling all weirded out unnecessarily, especially since there is so very much for us all to be weirded out by on a daily basis living with RSD.

Basically, there are a couple of big things that we all need to keep in mind here. One is that EVERY treatment and EVERY med doesn't work the same on EVERY patient. What works for some, will not work for others, and will possibly even make yet others worse. There is really no way of telling. The other is that there are LOTS of folks that come here to find out the majority of their info, just because they don't have the energy, strength or ability to sit at the computer for long hours at a time trying to look up lots of stuff. There are many posts here that have links that are easy to click on to go and read whatever might interest a person. There are many people that share their own personal experiences, or those of the people that they care for that have this disease, to try to help others make a more informed decision, or to try to help them figure out why they might be feeling such and such way, or having such and such thing happen.

Like I said, I am really no fan of Neurontin, as I was put on the stuff back at the beginning of my RSD journey and had some really crappy side effects. Horrible Brain Fog (totally feeling stupid and not being able to make sense for forgetting even my basic vocabulary), slurred speech (that really concerned and scared my mother), bad vision problems (had a hard time focusing and not having things all blurry), a totally drugged feeling worse than ANY narcotic that I have ever taken before or since, and HORRIBLE weight gain (that I am STILL fighting to get off, even all these years later). I wound up weaning myself off of the stuff in about 2000-1, because I just couldn't take it anymore, and was sick of docs trying to say that I would adjust to it over time. Yeah..that didn't happen. So, I chucked the stuff, and said "Never again!".

But, all of that said, I have to respect the fact that while Neurontin did NOT help me in the least (and really made me feel worse in lots of ways), it Has Been and IS a "Wonder Drug" for lots of people. That is just how it is. So many folks that are better and in less Pain because of Neurontin, that it is something that can't be ignored or shunted off to the side. Nor should those people be made to feel afraid, or that they have to go and get into a huge fiasco with their Docs, or worse, that they need to get off of the med and go back to insanely high pain levels. Not if it is working for them. Also, folks shouldn't be scared away from TRYING the med, especially if their doc is suggesting it, for the very fact that it might actually work for them. A "non compliant" in some folks folder will make or break their WC cases, and what their doc will try to do to help them in the future (or not, if he decides to drop them for being non compliant too much and tying his hands).

We have to think of all of these things.

To warn about a possibly bad med interaction is fine. The other folks that responded about that topic either told of their own experiences or gave web sites to go and look it up on. Can you see the difference between that and the very vague and very scary "warning" that you just kinda tossed out there as an after thought on your post? I hope you can...

Anyway..I really don't want to see some big conflict pop up here. We all have too much to deal with already, and conflicts on the board are stressful. And we all know that usually stressful=flare or pain increase. No one needs that..right? I am sure that you don't need a bunch more stress than what you already have in worrying about your husband, trying to take care of him and the kids too, all the while holding down a job to support your family. Sheesh! That is stress enough for anyone! I really do believe that Artist's query was well intentioned. She is just trying to help look out for other members, too. She is really a very nice person, if you get to know her. I can tell you that first hand. I hope that you will find that out too.

Thanks for reading this, if you made it this far. I know that this got long, but that just seems to be how I type. I really hope that I didn't manage to offend you, or make matters any worse or more stressful for you, as that was not my intention at all. If I have, though, please don't hesitate to let me know HOW, so that I can try to clear any misunderstandings up as quickly as possible, Ok? Hope that you are having a really good day, and that your husband's pain levels are down at least a little (would be better if they were by A LOT, as that is news that we all like to hear!). Thanks again for your time in reading this.

Take Care,
Joselita
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