Neurontin or Lyrica - Decision Dilemma

[Sarahsmom46]

My doctor is giving me an option to try Neurontin and I am wondering if it is worth the switch over from Lyrica.  And who beeter to ask than my the members of our forum.

I started taking Lyrica about 1 month ago and although it is helping with the pain, I have also noticed that I've gained 6 pounds since.  I don't gain weight easily so this is a concern.  The pamphlet they gave me said it is a side-effect of the drug.  But even more importantly, it started making me feel "loopy", which is really affecting me at work and not in a good way.  When I told this to my neurologist, he said that he could try me on Neurontin and see if that works better for me.  

So, have any of you take both of these drugs and did you notice any differences between them both positive and negative?  I don't know what to do, but one thing for sure I don't want to go back to  having so much pain I couldn't walk or sleep.  HELP!!!  Thanks so much for any feedback you can give.  

Julie

[kwarendorf]

Hi Erika -  Welcome to the group.

THis thread is pretty old. It was last updated 6 years ago. Many of the original participants no longer participate :-) I just didn't want you to think they were ignoring you.

Kyle
PS I'm a Lyrica user, and fan, too.

[ErikaShanks]

I have been on lyrica for over a year and it's a lifesaver. I have fibro and edg and restless legs and lyrica helps all of it. I haven't had weight gain though. As for the loopiness have you tried taking it at bedtime. I had it but changed to night time dosing and i don't have it now. Goodluck. I would take just plain neurontin. Tried it years ago and it made me sick all the time. and the loopiness was worse.

[Quixotic1]

I forgot to mention something about trying to lose fluid.  It seems intuitive to limit our fluids if we want to lose fluid retention.  Big Time Wrong!  If we begin to let ourselves get a little dry (and remember the edema is not in our veins to be seen as vascular volume), then the kidneys start withholding more and more fluid to saave us from becoming dehydrated.  The kidneys will undo (and more) any attemps we make at getting ride odf the fluid.

So you need to stay well-hydrated to allow the kidneys to dump excess fluid.  I'm serious about this.   WELL hydrated.

Elaine and Craig see a Complementary Physician of high reputation.  I recommended to Elaine that she try Taurine and this doc was very enthusiastic about it, saying it was the only thing she uses for fluid retention.

Quix

[Sarahsmom46]

You have all given me incredible insight into these two drugs and I appreciate it more than you can imagine.  I hope that we have all learned from these comments as well.  

QUIX -  I have been looking for an alternative to going on diuretic, in fact my doctor would agree with you about the side effects.  He doesn't think its worth it at this point.  So, you suggestion about the Taurine would be a very good alternative.  He is an osteopathic neuro  what ever that means exactly, but he does not come across as a traditionalist so I think this would go over well with him.  He probably won't even blink an eye when I bring it up.  I'll give it try for sure.

WONKO - It really irks me that insurance companies can pick and choose what they will cover or not cover and Lyrica as many have mentioned is not a cheap drug.  I read the list cost for it when I picked up the script and it was $145.  That would make a huge dent in my budget, but if it works for then its worth it.  

KATHY -  Thanks for your 2-cents worth.  I'm just curious...Is there a reason that you take the 50mg 3 times a day?  Does it keep the pain under better control?  I'm so amazed to see how many of us are in this limboland. I am still new to this, only 4 months so far, and right now I don't want to hear the doctor say that this is MS, so I am trying to do my own research based on all the testing they did in hopes of finding a cause for what is happening, a cause that is hopefully not MS.  But, I know that as time goes on without a diagnosis I will likely start feeling this frustration more greatly.  So, I do hope you and the rest of us in limbo won't have to wait much longer.  Thanks again for your comments.

MAGGIE - $75 a month as a copay?  Yikes!  But you have to agree that it could be twice that if you had to pay full price.  Still 75 bucks is kind of steep.  Hopefully as time passes this drug price will start going down.  Hopefully...Thanks for your feedback.

Again, thanks to you all,  I feel good about my decision to stay on Lyrica for the time being.

Julie

[wonko]

I've been taking neurontin for a couple of months now.  For me, it takes the edge off of my wide range of sensory symptoms, but not to the point where I can stop noticing them.  I'm taking a modest dose of 800 mg/day, because at higher levels I had a bad reaction.

My doc told me the Lyrica is newer/better, like stated above, there are less side effects, and you don't need to take as much or as often.  However, my insurance won't cover it.  I am debating trying it anyway and paying outta pocket.  Neurontin feels like I'm trying to mop the floor with a piece of yarn.  

I have no diagnosis and am in a wait-and-see mode.  Not having the constant psychological distress of tingling and burning would make it a lot easier to cope with this status!

[Quixotic1]

My favorite remedy for fluid retention is the amino acid Taurine.  A lot of Alternate and Complementary docs like this.  The dose is 1500mg to 2000mg per day.  If I have a lot of fluid to lose I combine it with one of the better forms of Magnesium such as magnesium orotate.  I take one capsule daily and it also brings my blood pressure down if I am on steroids.

If it can be avoided I never recommend a diuretic.  They have horrible metabolic consequences not seen with taurine.  I don';t know what the active ingredient is in dandelion root tea.

I also like the idea of the amitriptyline.  For the people on this, if it makes you too sleepy, try taking it 3 or 4 hours before bedtime.  It is a great "add-on" for neuropathic pain and for people who have trouble sleeping.

quix

[Fluffysmom]

Hi, Julie,

I just thought I should throw in my two cents about Lyrica.  

I took Neurontin for years, up to 1000 mg a day, split in three doses.  It helped my Restless Leg Syndrome, but whenever I tried to increase the dosage to help my nerve pain, I got woozy.

I have a Sports and Spine Medicine doctor, and he told me that Lyrica was a more clean drug; that it didn't build up in your system and cause problems down the road, and it was stronger, so you could take lower doses.  

I switched, and take 50 mg. of Lyrica three times a day.  I did gain weight, but I believe that happened because about the time I switched, I herniated a disk in my back, and had so much pain I couldn't get much exercise, and ate comfort food.  I believe it was my fault rather than the drug.  I then started on the Limboland road with fatigue and stuff that makes it difficult to take the weight back off, but I'll take care of it, I keep trying.

It sounds like your weight gain might be from water retention.  I had trouble with that at one point, and didn't like taking a diuretic.  I tried some dandelion root tea, and my water retention went away, as well as my borderline high blood pressure (which never came back)

I have found that when I have extra nerve pain at night, and extra Lyrica 50 really helps, so I may ask my doctor if I should try it on a regular basis.

Ok, that's a lot more than two cents worth!

Take care,

Kathy

[LLWB]

Wow, that's cheap. My co-pay is $75.00 a month. I have crappy prescrip insurance.

Maggie

[Sarahsmom46]

I am still amazed at the seemingly high doses.  When I mentioned the 200mg to my doctor, I thought he would chime in and say "the instructions must be wrong" or something to that effect.  So, 200 isn't really that high after all, but I have found that it helps me.  

Maggie, I understand what you mean about taking the night dose.  2 nights ago I was already in bed when I remembered that I hadn't taken it.  I was too lazy or tired to go get it and by about 4 in the morning I was in so much pain I couldn't go back to sleep.  Ha!  I won't be too tired next time to get my behind up to take them.    I am sorry that you have to be on the prednisone.  I hate being on that stuff, but it does work miracles.  It has saved me a couple of times, but I still hate having to be on it.  I'm glad you won't be on it much longer.  

Farah - My copay for the Lyrica is $30 a moth.  I am not complaining as it is really doable with my budget.  Where do you live?  I know what it is like not to have insurance at all, so I appreciate having not only medical but drug coverage.  It all depends on having a particular job though and if the job goes then so will the medical coverage.  

Thanks to you both for your interesting and enlightening feedback.  Stay well.

Julie

[LLWB]

I take one 200mg in morning, and 200mg at night. Some days I don't do the morning dose, if my pain isn't too bad. Try to always take the one at night tho, don't want any withdrawal symptoms. The neurontin was problem free for me. My biggest problem right now is I had nose and sinus surgery last week, and am on Steroids. I didn't go to bed last night, intil 7:30 this am.........hope that makes sense to you, LOL One more day of them, will have to catch up on sleep before I have to go back to work! So much for a restful recovery. Good luck, let us know how you do, and which one you decide to try.

Maggie

[Farrahlicious]

I have been takijng Lyrica off and on (depending on the budget, you knw.. i live in a country where the nsurance does't cover the drugs.. drugs, hehehe)
I feel it helps with the pain. I try 75mg once my mom gave me the gift of 150 and i felt like i was in a Greatful Deald concert.. but no, no weight gain.. What i hate is Rivotril! damn Rivotril makes me "sleep walk" (ok, ok, i wake up) and gives me the muchies. Keep clear from that one. But Lyrica helps. And it's supposed to make you all sweet and nice, so if it's cheap with insurance, GO FOR IT!!

hope you're doin good!

Farrah

[Sarahsmom46]

Wow!!! 400mg?  I thought 200mg was a lot.  I know 200 makes me feel strange, but I can't image being on 400.  How many fills do you take a day?  I am going to probably stick with it especially right now as I'm in my 3rd day of some type of exaccerbation, but plan on trying neurontin in the next few months.  I want to compare the difference too.  

You don't get loopiness with neurontin?  No weight gain either?  I read the side effects and it seems to not have the same side effects as Lyrica at all.  I have been told that both are similar type drugs, chemically.  Thanks so much for your valuable feedback.  

Julie

[LLWB]

I have taken both Neurontin, for years, and Lyrica twice. Once for 1 month, and now for 2 months. But iin the meantime my neuropathy has increaed in pain. I too get the loopy feeling with Lyrica. I haven't gained any weight (this time), but I don't like the way it makes me feel, and it is MUCH more expensive than Neurontin. I'm going to ask for a shift back to Neurontin next time I see me PCP. 400mg of Lyrica is just too much for me. I'm sure I'll have to taper off, than titrate back up, but I think it will be worth it.

Best wishes, Maggie

[Sarahsmom46]

I really appreciate knowing that I wasn't the only one with these strange symptoms.  How long did you take Lyrica before you decided to go off it?  

I think for now I'll stay on it to be sure that this is or isn't right for me.  However, I don't want to stay too long because the side effects are uncomfortable.  Thanks again for sharing your experiences with it.  It was very helpful.  

Julie

[Sarahsmom46]

Thanks for sharing your experience with neurontin, it was very helpful and I may still consider it.  

About the weight gain with Lyrica.  I weighed myself this morning and saw that I've gained 5 pounds since starting.  I knew weight gain could be a side effect right from the start so I scaled down my calories to compensate so if I did gain that it wasn't from over eating.  My neurologist wants a report and I can tell you right now that he is not going to be happy about the weight gain.  When a drug causes you to gain weight, then a whole other set of problems arise.  My legs are swollen a bit and I feel otherwise bloated.  My bet is that this is water weight.  The loopiness has gotten better though.  I think my family and coworkers are grateful for that.  But I have to say it is helping the pain at least 70% of the original pain.  We'll have to see whether that continues.  

I hope you can find another med that can help with your pain.  Drugs are strange in that what works for one person may not work for another, but hearing about different people's experiences with drugs like lyrica and neurontin, which are similar in chemical makeup, is very helpful.  I will stay on lyrica for the time being and see if these side effects abate, otherwise I am going for the neurontin.  

Thanks again for your helpful comments.

Julie

[doublevision1]

I have been on the max daily dose of Neurontin for a couple of months now.  It did not seem to be providing much relief for the neuropathic pain in my hand.  I started on amitriptyline recently and am now on 50mg per day.  I am finding that it does seem to provide some relief, however I may need to scale back to 40mg as the higher dose makes me really drowsy and I even wake up tired after 8 or 9 hours of sleep.  I am weaning off Neurontin since it didn't seem to help. I'm now at 2700mg per day and noticing no difference from 3600mg.  

I had no side effects, incl weight gain, from the Neurontin.  Too soon to tell with amitriptyline; so far the only side effect from that is the drowsiness.  My GP said weight gain and dry mouth are also common, but this hasn't happened to me thus far.  She said the weight gain comes from increased appetite.

I have not tried Lyrica.  My neuro was reluctant to go that route first, becasuse of the side effects, although I did not ask him which ones concerned him most.

I'm curious...what is it that is causing your weight gain from Lyrica?  Does it cause you to retain fluid, or is it increasing your appetite and you're eating more, or does it make you too tired to maintain physical activity?  Or all three?  

db

[julia111]

Hi!  Although some people DO have success w/ Lyrica, I had an UNPLEASANT experience with this drug.

I was on Lyrica 75 mg 2X day recently and experienced similar side effects you speak of -  Weight Gain, Loopiness, Speech Problems, Sleepiness , difficulty driving and it really did not help with the pain.  

I was concerned and did some reading about it - some that scared me a bit  - so I was anxious to stop taking it.  Even tapering off from my low dose was very uncomfortable.

I'm curious to hear more about the neurontin too - good or bad.

Good luck,  Julia

[Sarahsmom46]

You always have great feedback, and thanks again.  I think I mentioned in the past that I'm on 200mg per day of Lyrica and am feeling like a swollen blog right now.  I am upset with the weight gain but it was expected.  I tend to gain weight on drugs that have this as a side effect.  Do you recall if you ever gained weight on neurontin?  And, did you feel the loopiness (can't think of a better word at the moment - probably cognition trouble :O+))?

I think I will stick to the lyrica for now and deal with the weight gain as it is helping.  But I'd still love to hear what others think about neurontin.  

How long  have you been on Lyrica?  

Thanks again so very much!!!!

Julie

[essdipity]

This is such an individual thing. I'm on Lyrica with good results and no side effects. Years ago I was on Neurontin, which did nothing for the pain but caused a muscle in my arm to jump so much I had to 'tuck down' the arm. It was embarrassing.

However, that's me. You'll find many here who are happy with Lyrica and probably an equal number just as happy with Neurontin. Same for the negative side.

If Lyrica is causing you problems, why not try a switch? It's not as if you couldn't switch back. It's also very possible that since these meds are similar, you wouldn't have to taper down and then build up again. Subject, of course, to your doctor's instructions.

Good luck,
ess