NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Who takes Lyrica with great success for burning pain and little side effects? (https://www.neurotalk.org/peripheral-neuropathy/59006-takes-lyrica-success-burning-pain-little-effects.html)

jess18 11-06-2008 08:47 AM

Who takes Lyrica with great success for burning pain and little side effects?
 
I have heard from people on this board that couldnt take Lyrica. Anyone find that it is of great help for their burning pain? I am wondering if anyone has taken it and found:

1. Lessening of burning symptoms
2. Little to no weight gain
3. No swelling

If so, how long and what dosage do you take in order for it to be effective for you? Does the Lyrica increase your appetite or slow down your metabolism?
I saw my Neuro and am not sure what I am going to do yet. I do beleive in the old adage, " if it ain't broke"... I am on Neurontin 2200 mg and Elavil 20mg, and find that it works for me, but I do have days where I am on the couch with ice for 3 days because the burning increases. I think it may be becuse of PMS or a flare. It almost seems like it gets in my head where I start negating all of the good days. My Neuro says I can try the Lyrica, so I am not sure. I don't have side effects on the Neurontin, but I guess I am just curious if it would be even better, so I thought I would ask people's thoughts.
thank you:) Jess

george75 11-06-2008 08:59 AM

Burning feet.
 
Jesse i have had PN for ten years. The best thing that has helped my burningfeet is to put a 1/2 inch of water in a container. Then add ice a little
bit at a time . The colder you can stand the better.This also helps the swelling.


George

george75 11-06-2008 09:02 AM

Burning feet.
 
Jesse i have had PN for ten years. The best thing that has helped my burningfeet is to put a 1/2 inch of water in a container. Then add ice a little
bit at a time . The colder you can stand the better.This also helps the swelling.

Lyrica did nothing for me. I then tried Cymbalta and it is working to keep my pain low.


George

mrsD 11-06-2008 10:13 AM

Lyrica and Neurontin
 
are chemically related (and very similar). In fact they are even metabolized the same way (that is excreted WHOLE via the kidneys).

The difference is that Lyrica needs lower doses, and costs a bundle more. They work the same way however.

Some people like Lyrica better, some cannot tolerate it (it can cause a serious shortness of breath issue that Neurontin doesn't seem to), some get terrible swelling from it.
http://neurotalk.psychcentral.com/sh...ad.php?t=27839
The breathing side effects are being reported more frequently now since the drug was approved for Fibromyagia (which results in more people using it)

If you are doing well on Neurontin, I wouldn't change that.

I am going to repeat my recommendation of Lidoderm patches. Placed correctly over the area of the lower back where the pudendal nerves enter the spinal cord (cauda equina) may give relief. They do not work instantly but do numb that area and prevent transmission of pain signals.
I used them for 14 days for my MP pain before they really kicked in. In fact, they STOPPED the misfiring of the lateral femoral nerve for me, so I didn't have the pain anymore so intensely. I still get mild twinges esp when I use my thighs like on the recumbent bike, or in stretching, but the stabbing pain I had for 10+ yrs is gone, the stinging gone, and 80% of the numbness gone.
This was nerve damage from a C-section.
I would try one patch cut in half and placed over that lower coccyx area on both sides of your bottom spine (just at the butt crack beginning).
If these work for you -- you may be able to get off the oral meds, entirely.

Here is a link to the anatomy--- http://www.pudendal.com/
you can see in the first illustration there that the nerves can become entrapped in several spots.
But they all run together at the spinal origin. This is where you try to interrupt the signals with the Lidoderm patches.

jess18 11-06-2008 12:22 PM

Thank you George and Mrsd.
I know about the Neurontin and Lyrica being similiar in action, and know that Lyrica is stronger. Also, the biovailability is higher with Lyrica than Neurontin. I knew about the higher you go on Neurontin, the less is absorbed and found that interesting, but yet wondered if that was the case, why did people go much higher on the Neurontin. Anyhow, I suppose I was wondering if I would have more of an even stream of " good days" with less burning on the Lyrica, than some unpredictability on the Neurontin. I do have good days, but then I have weeks where I spend 4 days on the couch.
I have tried lidocaine ointment, and liocaine/prilocaine cream ( EMLA) but combined with my current regime. I could not see only taking them and nothing else. I do see what you mean about the patches and the area of the spine, so it will be something to consider.
I suppose my original question should have been do people consistantly have more "good days" with a dullness or less burning on the Lyrica than they do on the Neurontin?

thanks:)

mrsD 11-06-2008 12:33 PM

Quote:

Originally Posted by jess18 (Post 403278)
Thank you George and Mrsd.
I know about the Neurontin and Lyrica being similiar in action, and know that Lyrica is stronger. Also, the biovailability is higher with Lyrica than Neurontin. I knew about the higher you go on Neurontin, the less is absorbed and found that interesting, but yet wondered if that was the case, why did people go much higher on the Neurontin. Anyhow, I suppose I was wondering if I would have more of an even stream of " good days" with less burning on the Lyrica, than some unpredictability on the Neurontin. I do have good days, but then I have weeks where I spend 4 days on the couch.
I have tried lidocaine ointment, and liocaine/prilocaine cream ( EMLA) but combined with my current regime. I could not see only taking them and nothing else. I do see what you mean about the patches and the area of the spine, so it will be something to consider.
I suppose my original question should have been do people consistantly have more "good days" with a dullness or less burning on the Lyrica than they do on the Neurontin?

thanks:)

The Pfizer and ParkeDavis companies were the ones who encouraged doctors to use those massive doses of Neurontin.
Never mind that more than 1/2 of those high doses were not absorbed. It made them alot of money, and people just pooped out what was not absorbed.

Lyrica is not "stronger"....it is more potent, milligram for milligram. That means you use just less. It is not "more efficient for pain". It is easier to dose, and compliance on the patient's end is easier. When people have to take more pills, they often mess it up or skip. The fewer pills the better the compliance. That is why many drugs end up as Long Acting dosage forms.

I do not think I have seen any reports that Lyrica is "stronger" or more efficient at comparable doses. It is basically the same.
In general it appears that patients have to get to the really high doses of Lyrica to see good pain
relief. This is very expensive and some insurances will not pay for it still.

The fact that you do not see much relief from topical lidocaines at the local tissue level you are applying them at suggests the pain trigger is not there, but higher up along the nerves.
I found Lidoderm patches very ineffective when applied where I felt pain, and far more effective higher along the axon paths where the nerves go to. Topical lidocaine on mucus membranes may cause a rebound throbbing when they wear off. I never had a rebound when using the patches like that. (you have to take the patches off for 12 hrs each day.--you only wear them 12hrs at a time).

jess18 11-06-2008 05:06 PM

Thanks MrsD. Ok. I have a better understanding of the dosages. I was under the impression that becuase Lyrica had a higher bioavailablity, that it was more effective than Neurontin in that way. I understand about the dosage and taking more. My doctor mentioned that I would be starting on 2 ( 75mg tabs a day) ..
I keep a journal so I am really not sure yet. I have had some success with Neurontin. Not a level 2 pain though, more like a 3-4 with the meds.
I am also doing PT for pelvic floor so i want to see how that helps I have alot of hope that is may help the nerve and the GI issues too.
I will be seeing my gyne in december, so I can ask about the patch. That sounds like something that may work well. I do believe it is higher up the nerve as I am not sensitive to the touch ( burning) but more internal.

Thanks again, and I will see about the lidoderm patch and let you know if I get it prescribed how it works. I didnt think to put it back there. ;):)

jsrail 11-07-2008 11:37 AM

Very interesting stuff. My Neurontin was making me hungry all the time and I did end up gaining about 20lbs in a couple months time. But now that I'm on Methadone as well (Tramadol just wasn't working and the ins. co. wouldn't approve Lyrica), its seems to counteract the hunger and I have lost the 20lbs over the last month or so without any behavioral changes other than that I'm not so hungry all the time. Of course with all the chocolate left over from Halloween, we'll have to see! lol

I'm very scared of patches. That Fentinel (sp?) patch nearly put me in the morgue! But I have from a couple of my clients in the medical field that said they have had some reported problems with that stuff.

Anyway, I sure like this Board and the interesting info and story I find here.

Jay

KDShan 11-07-2008 12:46 PM

Quote:

Originally Posted by jess18 (Post 403171)
I have heard from people on this board that couldnt take Lyrica. Anyone find that it is of great help for their burning pain? I am wondering if anyone has taken it and found:

1. Lessening of burning symptoms
2. Little to no weight gain
3. No swelling

If so, how long and what dosage do you take in order for it to be effective for you? Does the Lyrica increase your appetite or slow down your metabolism?
I saw my Neuro and am not sure what I am going to do yet. I do beleive in the old adage, " if it ain't broke"... I am on Neurontin 2200 mg and Elavil 20mg, and find that it works for me, but I do have days where I am on the couch with ice for 3 days because the burning increases. I think it may be becuse of PMS or a flare. It almost seems like it gets in my head where I start negating all of the good days. My Neuro says I can try the Lyrica, so I am not sure. I don't have side effects on the Neurontin, but I guess I am just curious if it would be even better, so I thought I would ask people's thoughts.
thank you:) Jess

I have been taking Lyrica for over 2 years and have had no side effects. I am small (5'3", 110lbs) and never experianced the weight gain some people speak of. I am on 600mg/ day. I would not be able to function with out it. It greatly diminishes the sharp, stabbing, shooting and burning pain I feel in my right leg, a result of damaged nerves from a car accident. I would reccomenmd trying it if your doc. thinks it would help you.

Good luck!:rolleyes:

sbvcrn 11-07-2008 08:29 PM

burning feet
 
Quote:

Originally Posted by george75 (Post 403176)
Jesse i have had PN for ten years. The best thing that has helped my burningfeet is to put a 1/2 inch of water in a container. Then add ice a little
bit at a time . The colder you can stand the better.This also helps the swelling.


George

Isnt it interesting how we are all so different...I have the burning feet, legs, hands and arms and thought I'd try putting my feet in cold water (no, not icy or anything like that) and experienced absolute agony with terrible burning when I removed them. For me (go figure and makes absolutely no sense) a nice HOT bath helps my burning. Have no idea why. Maybe the hot water cancels out the burning?! Just goes to show what works for one may not work for another.

Silverlady 11-07-2008 10:16 PM

To Jess
 
Quote:

Originally Posted by sbvcrn (Post 404025)
Isnt it interesting how we are all so different...I have the burning feet, legs, hands and arms and thought I'd try putting my feet in cold water (no, not icy or anything like that) and experienced absolute agony with terrible burning when I removed them. For me (go figure and makes absolutely no sense) a nice HOT bath helps my burning. Have no idea why. Maybe the hot water cancels out the burning?! Just goes to show what works for one may not work for another.

Jess, If you cut the Lidoderm patch in half and then cut it part of the way so that you can place it on the sacrum and along both sides at the beginning of the buttock crack, it will help the pain you are describing. I have a fractured sacrum with the break going thru S3/4. I also suffer from the other issues you describe. Using this patch daily gives me about 5 hours of good relief in the morning. I usually put it on about 9:00 p.m. and take it off about 9:00 a.m. It helps with the horrible burning. But like Mrs. D says, it takes several days before you start feeling the relief.

Billye

Monica de Lara 11-09-2008 03:22 PM

I take lyrica and it has been very helpful for me. I take 225 mg a day and i find, divided into three doses. i have found my pain decreased. I am combining it with elavil, just 12.5 mg a day, it's been almost always enough for me.

The only side effect is that i was sleepy at the first two weeks, and veeeery sleepy... but it only lasted two weeks aproximately. No weight gain at all for me.

nide44 11-10-2008 09:25 AM

I take Lyrica (switched from Neurontin) and Tramadol,
and have little to no s/e except for constipation (take FiberSure)
and some slight memory lapses (where'd I put those car keys?).

jess18 11-10-2008 05:47 PM

Thanks for replying. :)

I suppose what would be helpful to me, and I know it is subjective, but what are your pain levels laying down? Standing? Sitting?
Or are they all the same with the meds?

Sincce I have pudendal neuralgia, the burning pain is different. While taking 2400mg of neurontin and 25mg of Elavil, my pain levels are about a 2 while lying down, standing, a 2-3 while walking, and higher when sitting 6-7. That is why I am unsure if i should even go on the Lyrica, as my levels are low ( except sitting, which I avoid mostly) and know that it may not get to 0 with meds ...

nide44 11-11-2008 09:43 AM

I don't think it ever gets to '0', with meds.
I think that 1-2 is the best we can hope for, with occasional periods
of distraction that seem to be an '0', but in reality are just that we are
so absorbed in whatever else we are doing, that the time goes by,
& we don't realize that we've been 'pain free' for a short time.
We really aren't, but the mind seems to play many tricks with the
ability to block-out certain pain, if it is distracted enough.
Just an observation, and personal comment.

jess18 11-11-2008 11:18 AM

Thank you Billye and Bob

I will ask my pcp about the lidoderm patches:) and let you know how it goes.

sallymander 11-15-2008 09:58 AM

I've been on Lyrica for about 18 months, no side effects except not being able to find Z on my keyboard :rolleyes:

Started out on 150mg/day but it had no effect until I was upped to 300mg.
Was up to 600mg day for most of the 18 months but now it seems my idiopathic neuropathy is starting to fade away. Have now cut back to 350mg and it's still working but I can tell it's still to early to cut it off completely.

OrdnanceCorp 12-14-2008 06:12 PM

Ouch
 
Quote:

Originally Posted by sallymander (Post 408499)
I've been on Lyrica for about 18 months, no side effects except not being able to find Z on my keyboard :rolleyes:

Started out on 150mg/day but it had no effect until I was upped to 300mg.
Was up to 600mg day for most of the 18 months but now it seems my idiopathic neuropathy is starting to fade away. Have now cut back to 350mg and it's still working but I can tell it's still to early to cut it off completely.

After a pain management doctor put me on Nuerontin 100mg 3x daily and Opana 20mg 2x daily from 10mg Percocet as needed, I finally had relief from pain. However, the Nuerontin gave me hostility. I was constantly feeling anxious and angry on it. The Army then sent me to a new PM doctor and he prescribed me Lyrica. It has worked miracles. I've had about 10-15lbs weight gain and tons of swelling. I can no longer wear my wedding band. But, either be in pain or be a little fatter :(.

I take 150mg Lyrica 3x daily now with 10mg Opana ER 3x daily and 5mg IR as needed for BK pain. So far so good. I do notice though with Opana if I try to skip a dose because I don't hurt, I immediately feel withdrawals. I become tired, weak, diarrhea. Also, If I don't take the Lyrica I feel pain... It's a cocktail of medication the are co-dependent of one another each other for fantastic pain relief.

Good luck.

ZEBHURTZ 12-15-2008 02:44 PM

lyrica
 
hi jess
I'm the new kid on the block but have had pn for 30+ yrs.. at one time I was taking 4000mg neurontin and just today my pcp moved me up to 400mg lyrica(from 300mg) the lyrica took a long time (45+days) to kick in but am very satisfied with the results and am glad I stuck it out and waited for it to begin working. weight gain was insignificant when compared to pain reduction. a semi-complete list of my meds is on the thread "new and ignerent" although today I also stopped the percocet and am trying avinza 30mg and also tylenol #4 (hate the tylenol, is to hard on my liver) as I am building a tolerance to the opiates. hope you find what works for you

Grizabella 05-02-2009 11:38 AM

I tried Neurontin and it was really bad for me. I take Lyrica now at 150mg. night and morning. Recently the doctor tried increasing my Lyrica but it made me extremely nauseated, but backing down to a lower dose got rid of that. I also take Trileptal in the morning and at night and at bedtime I take Flexaryl. I almost think the Trileptal does better for me than the Lyrica, really. If I forget the Trileptal for even two or three hours, my burning starts back up again. Oh, I also take 5mg. of prednisone a day, but that's because my PN seems to be a genetic inflammatory condition. I don't have any weight gain with the Lyrica and no swelling. With Neurontin, my legs swelled horribly.

jakatak 05-03-2009 10:47 PM

Lyrica is the best
 
Quote:

Originally Posted by Grizabella (Post 504737)
I tried Neurontin and it was really bad for me. I take Lyrica now at 150mg. night and morning. Recently the doctor tried increasing my Lyrica but it made me extremely nauseated, but backing down to a lower dose got rid of that. I also take Trileptal in the morning and at night and at bedtime I take Flexaryl. I almost think the Trileptal does better for me than the Lyrica, really. If I forget the Trileptal for even two or three hours, my burning starts back up again. Oh, I also take 5mg. of prednisone a day, but that's because my PN seems to be a genetic inflammatory condition. I don't have any weight gain with the Lyrica and no swelling. With Neurontin, my legs swelled horribly.

After all the playing around with drugs, I have settled on Lyrica over neurontin. Since I have been taking Lyrica on a regular basis and accepting that I really have IPN I can honestly say that my pain level is almost zit! I can wear all my shoes, exercise on my elliptical machine, walk around our little like out the backyard and just forget that I even have this disease. I've gotten weight gain under control...again...with the help of the South Beach Diet. This is the best I've felt in four years!!!!:)

nide44 05-04-2009 09:57 AM

Glad to hear it, Jack!
Its about time. You can now get on
with the rest of your life.....and have a life
(some restrictions may apply ;) )

Chrissym56 05-20-2009 01:20 PM

Quote:

Originally Posted by KDShan (Post 403831)
I have been taking Lyrica for over 2 years and have had no side effects. I am small (5'3", 110lbs) and never experianced the weight gain some people speak of. I am on 600mg/ day. I would not be able to function with out it. It greatly diminishes the sharp, stabbing, shooting and burning pain I feel in my right leg, a result of damaged nerves from a car accident. I would reccomenmd trying it if your doc. thinks it would help you.

Good luck!:rolleyes:

I'm withn you Lyrica has worked the best for me. I tried everything else>

jakatak 05-24-2009 07:40 PM

Lyrica....lyrica....lyrica
 
I don't know what I'd do without Lyrica. I tried Neurontin, and it was ineffective. Lyrica heat the magic head on the nail. It has been a life savor for me. When I'm on it.....zero pain. It is the greatest. Yes, there is some carbo cravings....but, it is a small price to pay, when you consider the alernative.

Silverlady 05-27-2009 09:56 PM

Lyrica and Weight Gain
 
Well, we are on this discussion and I'd like to speak up. Since starting Lyrica I've finally got pretty good control of the pain but the weight gain is getting out of control. I've gained 20 pounds. When we went to Mayo they increased my Lyrica only 50 mg. and it made the difference between my eating and not eating. It also stopped those screaming piercing jolts of pain. At least I think that is what happened. I was losing weight fast before this happened and Mayo said I was starving myself to death. But the pain in my mouth is what was causing it.

We moved about 6 months ago and it really aggrevated my Rheumatoid Arthritis. I also developed a mass of stress fractures. So combine Lyrica and a very sedendary lifestyle and you get 20+ extra pounds. Now how do I get it off when I can't exercise. The neurologist is threatening to remove me from Lyrica. But I don't know if it's the Lyrica, low dose Fentanyl or the rescue hydrocodone. None of which I want to take. I'm constantly trying to skip doses, leaving the Fentanyl on one extra day, but the pain is unbearable. The stress fractures left me with one pelvic bone that is misaligned, one leg shorter than the other and one foot that will not flex. The RA has crippled a lot of my fingers and toes too. It all adds up to a miserable existance without the meds.

Now back to the weight gain. Do any of you have any guess which meds or combo of meds is causing the gain and how do I get it stopped?

Billye

P.s. We sold our house finally, we close tomorrow!! Only one to clean now and one yard to do.:D :D :D :D

Billye

DanP 05-28-2009 12:40 AM

Lyrica is known to be a cause of weight gain. So, live with the weight gain or come off it and perhaps increase the Duragesic patch strength.

glenntaj 05-28-2009 05:48 AM

My speculation--
 
--is also that it's the Lyrica--weight gain is a well-known side effect of the med, both through fluid retention mechanisms and through the tendency to make one carb-crave.

Many have sort of accepted the trade-off of weight gain given the effectiveness of Lyrica for them, but in your case I know having that additional weight is certainly a problem for your weakened bones. Unfortunately, most of the anti-epileptics, with the notable exception of Topomax tend to have this side effect. As Dan says, you may just have to experiment with other combos to find an acceptable balance of pain relief/side effects.

Megan 05-28-2009 08:40 AM

Lyrica effects!
 
I realise that this is an old post but as it has been revived I will chip in!

I first started on Lyrica about twelve weeks ago - a low dose of 75mgs. At 75mgs I was initially very sleepy all day, even although I took a night time dose. I began to sleep better with the Lyrica but the pain did not budge.

About three weeks ago I increased my dose to 150 mgs per day, 75mgs @ 9am and 75mgs @ 9pm. When the doctor suggested increasing the dose, I was concerned that I would be a total zombie on the double dose but he assured me that it doesn't work like that....and he has been proved correct. Still the burning etc. has not reduced substantially (altho' I do detect a small improvement) however I will give this dose a bit longer to work.

As far as weight gain with Lyrica, it has not been an issue for me to date. I have actually lost about 18 kgs/40lbs since December as I have recently developed Gastroparesis, so keeping weight on now is a constant battle. It becomes a daily challenge to have enough calories and nutrients, as I can only tolerate a totally liquid diet. I do have some pureed food but even that can be tricky. We had guests to dinner tonight and I indulged (after having only soup - my mainstay these days) in some nibbles of chicken liver pate and very soft Brie cheese and am now suffering the nauseating effects....but it was yum while it lasted! Perhaps by tomorrow morning my tummy will feel better.

Greg49 06-02-2009 05:34 AM

Quote:

Originally Posted by jess18 (Post 403171)
I have heard from people on this board that couldnt take Lyrica. Anyone find that it is of great help for their burning pain? I am wondering if anyone has taken it and found:

1. Lessening of burning symptoms
2. Little to no weight gain
3. No swelling

If so, how long and what dosage do you take in order for it to be effective for you? Does the Lyrica increase your appetite or slow down your metabolism?
I saw my Neuro and am not sure what I am going to do yet. I do beleive in the old adage, " if it ain't broke"... I am on Neurontin 2200 mg and Elavil 20mg, and find that it works for me, but I do have days where I am on the couch with ice for 3 days because the burning increases. I think it may be becuse of PMS or a flare. It almost seems like it gets in my head where I start negating all of the good days. My Neuro says I can try the Lyrica, so I am not sure. I don't have side effects on the Neurontin, but I guess I am just curious if it would be even better, so I thought I would ask people's thoughts.
thank you:) Jess

Lyrica increases your appetite, so be prepared to gain weight unfortunately, 6-10kgs in fact.
Greg Australia

nide44 06-02-2009 08:39 AM

Actually, it is more of a carb craving than just an appetite enhancer.
(Altho I am a lifelong, admitted, chronic, chocoholic.)
I put on 30-35 lbs and went from 220 to 250 +/- (varies) in 6 mos.
That was 3 yrs ago and I've not been able to shed that 30 lbs, yet.

mestarspet 06-03-2009 12:33 PM

Lyrica Works for me!
 
Hi! I a m new to the site, but not to Burning Pain (BP)! I tried Neurotin 1800mg and it caused a high degree of confusion and no relief from the pain. The confusion was so bad-I had to label common household objects and names of folks in pictures! Ugh! Lyrica works so well that I am able to sleep at night! My dosage is 400 mg per day-starting initally with 50 mg and slowly up to 400mg. It did take a year for this to occur. The interesting thing about drugs it that my two sisters has the same nerve problems and 50 mg of Lyrica wipes them out! I will never take neurotin again!!!!!

DaveD61 06-06-2009 01:00 AM

To answer your questions
1. Lessening of burning symptoms-- it did not help me
2. Little to no weight gain-- gained over 30 lbs
3. No swelling-- legs and ankles wear very swollen.

It seemed very time I told the doc it did not help they increased the dose. I have been off it for a month lost 25lbs and the swelling is gone. I’m on new meds now and they are really helping me.
Dave


All times are GMT -5. The time now is 03:58 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.