Lyrica

[Kathi49]

Okay, all, after seeing my PM yesterday I have decided to give Lyrica one more try. I know pretty much about the side effects but I swear it made my legs cramp up. Then again, the leg pain could have been from other causes i.e., neuropathy, low estrogen (am on HRT), lumbar/sacral issues etc. So, if anyone would care to, please give me your experiences with it. My PM knows I cannot tolerate Neurontin. And, like I said, I did try Lyrica once but maybe gave up on it too soon. I would like to hear of any long term experiences with it.

Thanks!

[mforce00]

It did nothing for my PN. However, it did make me drunk at high doses, and falling onto a sofa can be fun. Neurotin and Lyrica have the same mechanism of action.

[BrokenBladder]

I tried Lyrica and Neurotin and neither one worked for me. They made me feel stupid and "drunk" and I still had alot of cramping that took place in my legs. Everyone is different though so maybe this time it will work for you.

[Kathi49]

Thanks mforce and bb,

I totally agree with the both of you. Neurontin is definitely a no-go for me. Sorry, but I term it Morontin as some do, because it is the truth! At least for me anyway LOL! My Neurologist eventually had me try 50mg in an Elixer form just to see if I could stand it and I couldn't. Lyrica worked well for the neuropathic pain but the muscle cramping was something else.

Okay, in all seriousness, I had a discussion with my PM about Norco and Vicodin since the opoids seem to affect me the least. I can usually get by on one Vicodin a day and/or one or two Norco (not at the same time of course). He KNOWS I do not abuse them. He told me I would more or less have to be eating them like candy before they did any damage to my liver and to quit obsessing about it LOL! BUT he did say I would probably be better off in the long run if I could stick with Lyrica. But I made it clear if it affects me the same way again, I will stop the stuff! So, in the long run he was teasing and said, "I'll tell you what, I'll give you 50mg and you can cut it in thirds and sprinkle it on applesauce!" LOL And I actually took him seriously until my sister hit me and said he was messing with me. The he busted out laughing.

I will probably catch a lot of flack for taking the opoids but they DO help with the neuropathic pain, at least for me. It is just that I am looking for something for long term. So, we shall see, I will try the Lyrica I suppose. But again, if I feel drunk for days on end...forget it LOL!

[twotoejoe]

I have been on Lyrica for about 4 months. I was on topomax, but it was not doing the job. I ramped up to 100mg twice a day, but it was not doing the job either. Recently my pain doc upped it to 3 times a day. Bingo. I am also on oxycotin 10mg 3x a day. This seems to be working pretty good for my PN at this point. The only problem is that I have gained about 20 lbs since I started taking it.

[Kathi49]

Thanks twotoejoe,

My Rx for Lyrica says 3 times a day. But my PM did tell me to tirate up fairly slow. And EEEEEEEEK the weight gain! Geez, in the past year I am almost where I want and need to be for my height. I have about 5 more lbs. to go. I should be around 135 but am at 140 lbs. But if the Lyrica works, I will just have to adjust my diet...again. And I was doing so well too LOL!

[curiousforever]

I only felt drunk for a few days. Made me miss the good ole days? Without the hangover ya know.

Other than that all I can contribute is neurontin works better for me - let us know - hopefully it will do some good for you.

[ErinENj]

I've been on Lyrica for I think more than 6 months and it seems to be working pretty well. I take 100mg, 3 times a day. It has reduced the amount of pain that runs down my legs. Nothing will get rid of it, but this med seems to at least lessen it some. Now I know that if I get the pain down my legs, it's because I've over done or done something stupid (which is way too often, but I've accepted that things that may be stupid for my back are good for the rest of me).

I agree with trying it once more. It's worth a shot that maybe it'll help a little bit.

Hope that things are better this time you try it and that those side effects were from other things! Keep us posted on how things go!

[Kathi49]

curiousforever,

LOL! I know. :) I had dizziness for the first 3 days when I first tried it. And I had to stop and think when I last had a drink. Then I remembered...it was in Hawaii 1999. :) Then, sad to say, the spinal stuff started in and because of the meds; haven't had one since...darn it. :D

Erin,

Yep, the docs will tell you to keep moving. Yet, when you do, here comes the pain. I did ask a pharmacist today (since I forgot to ask my doc), if taking this will interfere with Klonopin. He gave me all the information I needed and there is no interaction so I was glad to hear that. I will post back once I start this stuff. :)

[ErinENj]

Kathi: Yet another cyclical process to add to the list: doctors tell us to move our butts, moving means increased pain, back to doc who says, "just keep doing it 'cause it's good for you after eating all that starbucks iced lemon pound cak (yeah, I know. I'm obsessed. I just finished off my second to last piece of the loaf I bought on, oh, gee, Saturday. There's 7 big pieces per loaf, and $20 each loaf, but at least I can admit it to myself. That's the first step to recovery from loaf-addiction...:p :rolleyes: ), and then you start walking more and you're in more pain, and back to the doctor......and on it goes... I'm getting dizzy....:p

It's amazing how many of these cyclical thingies we have as chronic pain patients. And slightly scary. I think we should try to make a list of all of them so that we have them for reference. Instead of having to type out the cyclical process that is making our lives H-E-Double-hockey-sticks, then we can just say "it's #4 this week.... now it's #10". What do you think? Should we start a thread? (Just to clarify, I'm being somewhat serious. It's so hard for me on these boards because I am an amazingly sarcastic person. (it's in my genes. my dad is the same way, just a lot worse. I can't tell you the amount of times he's embarrassed me to no end because people don't know his level of sarcasm.:rolleyes: ) There's a little bit of sarcasm in the aformentioned thought, but I think it might be interesting to see how many of these things we experience thanks to CP). :D

Okay, slightly off topic from the thread. Sorry Kathi!! I really hope that the Lyrica works for you. Or at the very least, it doesn't give you any more of the nasty side effects like the muscle cramping you had the last time you tried it. It's worked really well for me, I think. I can't be really sure that it works, since honestly, I've been having a little trouble remembering exactly how my pain was before I started it as compared to how it is now. And I'm not sure when exactly I started it. I know it was before the fall semester. I think it may have been at the very beginning of the summer, but it may have been earlier.

I know that what always has bothered me the worst in all this is the pain that shoots down my legs. I used to be able to judge my 'stupid-move-o'-meter' by the amount of pain I would get down my leg. If it was in my hip, I hadn't done anything all that stupid, but it was starting to border on moronic. If it was down to my knee, I was at schmuck level. Then if it got down to my ankles and feet and was starting to shoot out of my toes, I was beyond the most moronic, idiotic, schmuckish point. Unfortunately, some days at school, like the ones when I had class from 8:30am, all the way through to 2:30pm (and I had been there since about 7 a.m. so I could beat traffic). The pain would be shooting out of my toes as soon as my butt hit the seat of my car.

But now I haven't had pain shooting down out of my toes since I went to my friend's house for the gathering for his birthday in January, and that was after a day on my feet running errands and trying to get everything wrapped and ready, then that day I was running around all day, doing things I shouldn't, and then had driven 1 hour to his house, and was there from 6 p.m until 2 a.m. and then drove home. That was a long weekend!! Thank goodness I was on winter break! And the pain will radiate down into my hip on somewhat of a regular basis when I'm at school, but having it run down my thigh really says to me that I've done something wrong. SO, I think the Lyrica has done me a lot of good.

So I hope that you have some good luck and the Lyrica works for you without any of the nasty side effects you experienced in the past. One question: Are there any other neuropathic meds out there? Or is lyrica the only one?

Keep us posted and I look forward to hearing that it's working really well for you! :D

[kukui]

Kathi,

My sig. other took Lyrica (in addition to his regular vicodin) and it really did help him. He thought the pain probably was about the same, but he was able to tolerate it more. It helped his overall well-being which put the pain more into the background.

Unfortunately, the doctor doubled the dose after just a week or two, and I've heard since then that this medicine has to be increased gradually. After the larger dose (I think he was at 350mg/day) he started swelling. I'm told it's rare, but he swelled so much you could hardly see his knuckles. He gained 7 lbs in less than a week, all water.

He stopped it quickly, which you also aren't supposed to do. That brought the nromal pain on stronger and he wound up in the ER.

My impression -- this drug can really help, but be careful how you increase and decrease.

[Kathi49]

kukui,

I understand about increasing/decreasing slowly. :) I have always done that with most meds I take. And I will be extremely careful with the Lyrica. I know how Neurontin affected me and Lyrica is its cousin. :eek:

[twotoejoe]

I have noticed some additional swelling since being on Lyrica. My right knee and foot swell more, however the knee is the one that I shattered and had surgery on last May, and the foot is the one that I have lost all my toes on.

[roz1950]

Lyrica is a weight gainer so beware . There are other meds out there.

[Kathi49]

Thanks twotoe and roz,

I haven't even started the stuff yet and I know I should. I am just holding off until things calm down around here. There is just too much going on at the moment and I need about 3 days where I don't have to do anything LOL! I know there are other meds like Neurontin, Cymbalta and Elavil. But trust me, I have tried them all with the exception of Topomax. My PM and my Neurologist will NOT prescribe Topomax. I am sitting here wracking my brain in an attempt to remember all of the meds they had me try. Oh, and one was Depakote. I used to have a list I kept and how each med affected me. I will NOT go back to those I just listed as they made me so sick. That is why I have stuck with the opoids for so long; they did not affect me at all other than just a little drowsiness. So, when I get a free moment, at least 3 days worth, I will try the Lyrica again. Weight gain is not really an issue if the Lyrica helps. If I start to gain, I might just change my mind. :)

[twotoejoe]

My PM and my Neurologist will NOT prescribe Topomax.

Have they given you a good reason why? Both my neurologist and my pain doc have prescribed topomax for me. I was on it for 4 years before going on Lyrica. I tried going back on topomax but it gave me stomach problems; why I don't know. I may try it again if it will help my weight gain.

[caudaequina]

i think topomax increases your chances of kidney stones, among other things

[Kathi49]

To answer you, and it has been awhile. But I believe they both mentioned issues with Glaucoma. It is just hard for me remember exactly because it has been over a year. I think maybe my Neurologist would have prescribed it but she was hesitant and my PM flat out said they did not prescribe it anymore. Someone correct me if I am wrong, because like I said, it has been a long time. :) And, I believe GZH (Gloria) posted something about this once; to have your eyes checked while taking it.

[curiousforever]

A neuro told me that topomax is really not always good for neuropathy. It caused mine to hurt a great deal worse.

[Kira]

Twotoejoe,

Topamax can cause metabolic acidosis, and for me it made my existing metabolic acidosis much worse. The other thing it did to me was GIVE me pins and needles sensations in my feet and hands for the first several weeks that I was on it. I did not like Topamax.

It can cause kidney stones, and another person said. I think it can make you sweat less, so increases your chance of having problems with heat. And there are some vision/eye side effects, too.

I'm sure there are other side effects. A good site for looking up side effects is www.rxlist.com (http://www.rxlist.com). Type in the name of the drug you are looking for... topamax is also topiramate, so it may come up as one or the other.

One GOOD side effect of Topamax, for me, was that it made me lose a few pounds.

[twotoejoe]

Twotoejoe,

Topamax can cause metabolic acidosis, and for me it made my existing metabolic acidosis much worse. The other thing it did to me was GIVE me pins and needles sensations in my feet and hands for the first several weeks that I was on it. I did not like Topamax.

It can cause kidney stones, and another person said. I think it can make you sweat less, so increases your chance of having problems with heat. And there are some vision/eye side effects, too.

I'm sure there are other side effects. A good site for looking up side effects is www.rxlist.com (http://www.rxlist.com). Type in the name of the drug you are looking for... topamax is also topiramate, so it may come up as one or the other.

One GOOD side effect of Topamax, for me, was that it made me lose a few pounds.


What I can't understand is that I was on Topamax for 7 or 8 years, then went on Lyrica for about a month, then just couldn't tolerate Topamax anymore. And I am a dummy, just what is metabolic acidosis?