PDA

View Full Version : Lyrica Questions



Peachy
04-28-2009, 03:39 PM
I'm now 3 months post-op and have been taking Lyrica (100 mg, twice daily) for nerve pain, which I'm not sure I even have. My feet have been quite swollen ever since the surgery, but the surgeon's nurse tells me that edema is quite common for up to 5 months post-op and is nothing to worry about. I do worry about it though, and recently my lips have begun swelling also, so much that I look like I've had collagen injections! They've even started cracking and bleeding. The literature on Lyrica says this (swelling) can be a side effect.

I've tried several times to cut back to one capsule a day for a while and then stop altogether, but every time I do, something happens that I've never experienced in my life before now. I have strange feelings of anxiety/depression once I'm off Lyrica for a day or so. This is really weird because normally I'm an optimistic, "roll-with-the-punches" type of person, and these dark, unhappy feelings totally spook me. So each time I go back on it, and those feelings go away.

After talking to the nurse again this morning, she's phoning-in a prescription for a small dose of Lyrica (25 mg) so that, by various combinations I can slowly taper down over time to 75, then 50, then 25, then nothing. She says if I have a problem later with nerve pain, we can try gabapentin (Neurontin), but when I read about that, it also can cause the same side-effects.

What I'd like to know is other scoli patients' experiences with Lyrica: If you had problems with feet swelling, did it go away after stopping this medication? (I'm afraid that mine will become permanent and that I'll have "fat feet" forever.) Did anyone else have the anxiety/depression?

I'm sure this drug has helped many people, and I wonder if I'm the only one having problems with it. Will appreciate any help.
Anne (Peachy)

LynnMarie74
04-28-2009, 04:29 PM
Anne--Im 3 months as well..and Im still on a nerve drug that is comparable to Lyrica...it's called Gabapentin. My doc did tell me it does cause water weight gain and bloating of legs, etc. Ive noticed my legs, especially my ankles are "thicker" than normal, and now that you mention the feet....I guess, now that I look down, and see the lines from my shoes digging into my feet....mine are swollen too! I dont feel I need it either, but w/o it, I get terrible itching.....TERRIBLE!! I mean to the point where it drives me insane. I am cutting down to only one a day, at night...but its a 100 mg pill. Try going off of it, and see what happens?

Lynn

debbei
04-28-2009, 05:53 PM
Anne,

What did the Dr.'s office say about the face/lips swelling? If you're unsure, a visit to the GP sure wouldn't hurt, just to rule out anything else that could be going on. I mean, really--how can the surgeon's office be sure when you're 1000 miles away??

I was never on Lyrica or the other nerve medication, but what you described SURE sounds like withdrawls. I never want to feel that ever again! I'm sure that cutting back on your doseage gradually will help.

Give me a call sometime; it's been a while since we chatted. :)

discombobulated
04-28-2009, 05:58 PM
Hi Anne,

Besides anything else, swollen lips can be a sign of allergic reaction, which *can* develop at any stage of a med use. It might be unlikely, but *please* see or call your doc to make sure it's not. I don't want to scare you, but swelling in other parts of the body, when in combination with other signs of allergy (inc. swollen lips), can be considered a sign itself. Others include shortness of breath / wheezing / difficulty breathing; swelling of the tongue, face, or other parts of the body; or rash, itching, or hives on the skin.

Lyrica can definitely have an effect on mood. Changes in mood are a known side-effect, & it is one of a number of anticonvulsant meds being studied for their anxiolytic (anxiety-relieving) properties. None of which directly explains your experiences with tapering, but it does show that Lyrica *can* affect mood. Perhaps it's that you were cutting down too quickly - this is a very strong med, stronger than gabapentin even, and any kind of med that works on the brain must be tapered off very slowly. It sounds like a good plan that your surgeon's nurse has, tapering down in 25mg intervals. I really hope it makes coming of Lyrica easier for you.

If all else fails and the tapering does come with a recurrence of the negative thinking, & if your nurse assures you that this is "ok"/safe, as a withdrawal effect it should disappear within a short time of coming off the med. If you are forced to tough it out, please make sure you have a good emotional support system around you, and have things to keep you busy as well as your recovering body will allow. But I hope it won't come to this for you.

Take care, and best wishes.

Linda W
04-28-2009, 07:19 PM
Hi Anne,

I took Lyrica 75 mg 2-3 times a day for about six weeks post op. It did a terrific job controlling nerve pain for me. However, at about 4-5 weeks, I noticed a marked fluid retention in both legs down to my toes. I could barely get my socks/shoes on and it was obvious that my skin was having to do a heroic job stretching over my elephant-like legs, ankles, feet and toes!

At about the same time, I was running out of the prescription which had been issued while I was in the hospital. My local pharmacy said they could not refill it because my insurance company would not approve it. Over the next several days my surgeon's office, the insurance company and the pharmacy went back and forth. Eventually, I had no Lyrica to take and ended up stopping cold turkey. The withdrawal symptoms of chills, sweating, nausea, vomiting, diarrhea, emotional ups and downs, crying and in general acting like a nut case were extremely hard on me and my family. On the positive side, the swelling in my legs was greatly reduced! Finally the triad of powers to be decided that I should take gabapentin -- Neurontin. After my withdrawal experience, I decided I would not take a chance with any other nerve medication and said "Thanks, but no thanks". About a year post op, I was having nerve spasm pains and gabapentin was again recommended. I have taken it infrequently and sporadically at bedtime with no side effects.

Definitely call your md's office about your symptoms. Allergic reactions tend to intensify over time. This is one of those cases where you want to be safe. I hope your symptoms resolve quickly. I am really sorry that you are feeling so poorly. My memory is still very clear on how badly I felt.

Good Luck,
Linda W.

Peachy
04-28-2009, 09:29 PM
Anne--Im 3 months as well..and Im still on a nerve drug that is comparable to Lyrica...it's called Gabapentin. My doc did tell me it does cause water weight gain and bloating of legs, etc. Ive noticed my legs, especially my ankles are "thicker" than normal, and now that you mention the feet....I guess, now that I look down, and see the lines from my shoes digging into my feet....mine are swollen too! I dont feel I need it either, but w/o it, I get terrible itching.....TERRIBLE!! I mean to the point where it drives me insane. I am cutting down to only one a day, at night...but its a 100 mg pill. Try going off of it, and see what happens?

Lynn

Lynn,
I'm sorry your feet are swollen too. I laughed when you said that "when you looked down" you noticed they were swollen! I've tried not to pay much attention to mine for a long time, hoping they'd just clear up, but I haven't been able to wear regular shoes since I went into the hospital. I stay in my fuzzy slippers at home (a lovely sight, to be sure!), and on the rare times that I go out (mainly to physical therapy), I wear loosely-tied sneakers.
Let's hope both of us see our feet go back to normal soon!

Anne

Peachy
04-28-2009, 09:37 PM
Anne,

What did the Dr.'s office say about the face/lips swelling? If you're unsure, a visit to the GP sure wouldn't hurt, just to rule out anything else that could be going on. I mean, really--how can the surgeon's office be sure when you're 1000 miles away??

I was never on Lyrica or the other nerve medication, but what you described SURE sounds like withdrawls. I never want to feel that ever again! I'm sure that cutting back on your doseage gradually will help.

Give me a call sometime; it's been a while since we chatted. :)


Debbe,
Actually I went to see my GP two weeks ago, in hopes of getting a lower dose. She said she could not treat me for another doctor, so she wouldn't give me another prescription for a lower dose of Lyrica. However, she did, at my urging, give me some diuretics (& potassium) which I've used 2 or 3 times. They helped a little, but within a couple of days, all the swelling comes back. It's a losing battle.

Let's talk soon,
Anne

Peachy
04-28-2009, 10:18 PM
Hi Michelle, (Discombobulated)

Wow, you know a lot about this drug! I've been questioning it for weeks. There's no real mention of the mood-related problems in the pamphlet the drug manufacturer gives you, other than to say "feelings of enhanced well-being". Well, I don't mind that; it's just the downer side of it when I try to stop.... like eventually you have to pay the piper.

Thanks for your thoughts. And I will be careful trying to come off it.
Anne

scurve4947
04-28-2009, 10:20 PM
Peachy,

I have three weeks till surgery and have been on Gabapentin for about 3 months. I started taking it to deal with the nerve pain I was experiencing and then quickly decided to go forward with surgery in order to permenantly fix the problem. The gabapentin hasn't really given me any problems. I take one capsule a day at night and fall asleep. Other than some moderate drowsiness, it's been fine. You may want to switch over and see if that particular drug works better for you than Lyrica. You never know...

Allison

Peachy
04-28-2009, 11:21 PM
Hi Anne,

I took Lyrica 75 mg 2-3 times a day for about six weeks post op. It did a terrific job controlling nerve pain for me. However, at about 4-5 weeks, I noticed a marked fluid retention in both legs down to my toes. I could barely get my socks/shoes on and it was obvious that my skin was having to do a heroic job stretching over my elephant-like legs, ankles, feet and toes!

At about the same time, I was running out of the prescription which had been issued while I was in the hospital. My local pharmacy said they could not refill it because my insurance company would not approve it. Over the next several days my surgeon's office, the insurance company and the pharmacy went back and forth. Eventually, I had no Lyrica to take and ended up stopping cold turkey. The withdrawal symptoms of chills, sweating, nausea, vomiting, diarrhea, emotional ups and downs, crying and in general acting like a nut case were extremely hard on me and my family. On the positive side, the swelling in my legs was greatly reduced! Finally the triad of powers to be decided that I should take gabapentin -- Neurontin. After my withdrawal experience, I decided I would not take a chance with any other nerve medication and said "Thanks, but no thanks". About a year post op, I was having nerve spasm pains and gabapentin was again recommended. I have taken it infrequently and sporadically at bedtime with no side effects.

Definitely call your md's office about your symptoms. Allergic reactions tend to intensify over time. This is one of those cases where you want to be safe. I hope your symptoms resolve quickly. I am really sorry that you are feeling so poorly. My memory is still very clear on how badly I felt.

Good Luck,
Linda W.




Linda,

How comforting it is for me to hear your story and know that I'm not the only one in the world having "emotional" problems, as well as edema, with this drug! You've helped me tremendously by sharing that with me! And oh my goodness, you had chills, sweating, nausea, vomiting, and diarrhea in addition to crying and the emotional roller coaster! That's even worse than I'd imagined!

What has surprised me so much is that when I've mentioned these "sad feelings" to doctors (surgeon & GP) and nurse, no one seems to know what I'm talking about.

Do you remember how long it took for the really bad part to subside? Were you on any pain killers during that time? I just wondered if they might lessen it some.

I will call the GP tomorrow about the swollen lips and see if there something else I should do....maybe a blood test to see if anything is out of kilter.

Thanks so much, Linda.
Anne

debbei
04-29-2009, 05:55 AM
Hi Anne,

I took Lyrica 75 mg 2-3 times a day for about six weeks post op. It did a terrific job controlling nerve pain for me. However, at about 4-5 weeks, I noticed a marked fluid retention in both legs down to my toes. I could barely get my socks/shoes on and it was obvious that my skin was having to do a heroic job stretching over my elephant-like legs, ankles, feet and toes!

At about the same time, I was running out of the prescription which had been issued while I was in the hospital. My local pharmacy said they could not refill it because my insurance company would not approve it. Over the next several days my surgeon's office, the insurance company and the pharmacy went back and forth. Eventually, I had no Lyrica to take and ended up stopping cold turkey. The withdrawal symptoms of chills, sweating, nausea, vomiting, diarrhea, emotional ups and downs, crying and in general acting like a nut case were extremely hard on me and my family. On the positive side, the swelling in my legs was greatly reduced! Finally the triad of powers to be decided that I should take gabapentin -- Neurontin. After my withdrawal experience, I decided I would not take a chance with any other nerve medication and said "Thanks, but no thanks". About a year post op, I was having nerve spasm pains and gabapentin was again recommended. I have taken it infrequently and sporadically at bedtime with no side effects.

Definitely call your md's office about your symptoms. Allergic reactions tend to intensify over time. This is one of those cases where you want to be safe. I hope your symptoms resolve quickly. I am really sorry that you are feeling so poorly. My memory is still very clear on how badly I felt.

Good Luck,
Linda W.

Linda,

How terrible that the insurance company forced you to go through these withdrawls because of their lunacy. At least they could have approved enough for you to wean yourself off safely. SHEESH. I'm glad you finally got through it.

CHRIS WBS
04-29-2009, 01:03 PM
Please excuse my ignorance, but what exactly does nerve pain feel like following this surgery? Is this more common with anterior surgeries? I was never prescribed nerve pain meds following my surgery. To my knowledge, I donít believe Iíve experienced nerve pain or muscle spasms.

Anne, other than drug-related issues youíre having, how else are you doing? Overall, are you pleased with the results of your surgery? Iíve been wondering how youíre doing since I think weíre around the same age.

debbei
04-29-2009, 01:11 PM
Please excuse my ignorance, but what exactly does nerve pain feel like following this surgery? Is this more common with anterior surgeries? I was never prescribed nerve pain meds following my surgery. To my knowledge, I donít believe Iíve experienced nerve pain or muscle spasms.

Anne, other than drug-related issues youíre having, how else are you doing? Overall, are you pleased with the results of your surgery? Iíve been wondering how youíre doing since I think weíre around the same age.

Chris,

I never had nerve meds either, but I believe one of the symptoms of nerve pain after the surgery are what I refer to as 'bee stings' or 'pinchie pains' in my back. Sometimes it feels like needles jabbing me back there. For me, they were never SO bad. I'd have my husband or daughter gently rub on the 'pinchies' and the pain goes away. It's happening less and less as time goes by, and my hubby tells me that the 'pinchies' are moving further and further away from the incision. Meaning originally the pains were right next to the incision on either side, and now it's moving outward.

Someone else can correct me if I'm wrong. :)

loves to skate
04-29-2009, 03:01 PM
For me, the nerve pain is down the sciatic nerve. It gets most intense at the end of the day and sometimes takes a couple of hours to settle down at night for me to fall asleep. The bee stings run along my shin bone and are nothing compared to the pain I get in my ankle and arch of my foot. Sometimes it feels like someone hit my ankle with a sledge hammer. Obviously I had a lot of nerve damage before I had my surgery and maybe some occurred during the surgery. Who really knows. I just hope that someday, it will all go away. I have not had any serious side effects from taking gabapentin other then sleepiness in the beginning. Interestingly enough, the more active I am, the less pain I have.
Sally

txmarinemom
04-29-2009, 04:17 PM
Peachy and LynnMarie ...

One thing I'd ask both of you to keep in mind is that some degree of depression around the Ī3-4 month mark seems to be "not uncommon". Not everyone experiences it, but it's about the time where you start to feel good most of the time - yet a day of overdoing (that doesn't FEEL like overdoing) will knock you on your ass for a day or two.

Peachy, it's entirely possible the Lyrica is also causing effects (it could be the case with the edema) ... and it could be causing - or exaccerbating - the blues. LynnMarie, ditto with the Gabapentin. Both drugs affect people differently.

I think I've mentioned, I'm 14 months post-op and still on Gabapentin. My dosage is 100mg/3 per day, but I usually just take 100mg in the morning. The main reason I started on it was for the insane itching. Fortunately, the only side effect I ever had from it was a sense of everything being very "surreal" for the first few days. It knocked my depth perception for a loop, and MAN, was I sleepy.

ChrisWBS, itching caused by scrambled nerves attempting to regenerate is one of the common nerve issues for which both drugs are prescribed. I did/still do have the bee sting/electrical shock sensations, but they were/are bearable. At about 3 weeks post-op I developed HORRID itching on a numb back - nowhere near the scar. Even now, if I lean back on my car seat just the right way (it doesn't help I have a stitch poking from the inside at the L1 attachment point), I feel like someone stuck me with a cattle prod.

Sally ... funny you mentioned the sciatic thing: I have it too, and have always found it weird because my fusion ends way above that area. The sciatic pain dooesn't even go all the way down to my leg - or even all the way down my rear. It's on the top half of one cheek - LOL. It isn't an awful pain: For lack of a better description, it just feels like I need to stretch it. I'm lucky with a higher fusion that I *can* bend and twist from the waist to ~sort of~ get it.

I hope you ladies get things straightened out. Just a thought, but have either of you tried the other drug? I know of several people who couldn't tolerate one drug, but had no issue with the other.

Not sure about Lyrica, but Gabapentin has the ability to magnify pain meds so you need less. Are either of you still on pain meds - and at the same levels as earlier in recovery?

Regards,
Pam

discombobulated
04-29-2009, 05:00 PM
Anne, how are you doing?


Chris,

I've been on the Lyrica for I think about 3 months now, after being on Valium for nearly 2 months since day 5 or 6 (?) post-op. After my 1st & 2nd fusions, I only had the stings / pinches / itches. But this time, I've had very bad nerve pains in my upper legs (only to the knee because I have no sensation below there, non-scoli related). These have been severe stabbing pains, like someone has gotten a hot knife & is racing it down the side of my leg; gripping pains like my leg is in a vice, then like my muscles are being ripped out; & low-level but constant electric shocks & shooting pains running hip to knee. I can't tell you what Lyrica has done for me. As the Valium was losing effectiveness (because I was becoming tolerant to it), I was getting little sleep, was writhing around much of the day/night, & so on. It's taken a while to get the Lyrica at a dosage that's controlling them quite well, but the side effects, mostly sleepiness & dizziness, have been well worth it (I'm on a horse-dose apparently - 100mg morning + 150mg night, for 30kg body weight).

It just amazes me the spectrum of problems nerve damage can cause! I can definitely relate to the itchiness in numb spots, as I still have that left over from my first fusion back in 1999. Though, when I think of it, I do believe the Lyrica is helping that, too...heh..I'd been so focussed on getting rid of the nerve pain, I hadn't realised I've not hacked/scratched/scraped at my back with scissors for a good few weeks now I think!! Cool...

I know this is hardly the thread for it, but since a few of you have mentioned it, what is sciatic pain like? I wonder if it could explain recent recurrence of shooting pain from my left pelvis down the inner left leg? Probably not lol..but I am curious.

Peachy
04-29-2009, 10:14 PM
Please excuse my ignorance, but what exactly does nerve pain feel like following this surgery? Is this more common with anterior surgeries? I was never prescribed nerve pain meds following my surgery. To my knowledge, I donít believe Iíve experienced nerve pain or muscle spasms.

Anne, other than drug-related issues youíre having, how else are you doing? Overall, are you pleased with the results of your surgery? Iíve been wondering how youíre doing since I think weíre around the same age.


Chris,
It's good to hear from you. This thread is the first time I've posted since leaving the hospital after the surgery. I guess mainly because I'm not yet sure of the outcome.

On the positive side, my curve went from 84 to 40 or less (2 x-rays, different measurements); my rib hump is barely noticeable now; I gained nearly an inch in height; my pelvis is even; I have a waistline now; and my middle looks longer and leaner....all of which are wonderful!!!

On the negative side, I have weakness in my right leg, so that my gait isn't normal. Dr. Boachie says it's probably caused by a nerve that was stretched during surgery, and, if so, it should eventually return to normal. I've talked to him by phone and am sending 3-month x-rays to him next week, but I won't actually see him until July, which will be my 6-month check-up. He says if there's a problem then, he'll do tests to see if there's nerve damage. I have a good physical therapist who says my right hip abductor muscles are weak, and he's working hard with me to strengthen them, so I'm hopeful that this will clear up.

Anne

Singer
04-30-2009, 06:27 AM
Anne, I also had significant weakness in my right leg with an abnormal gait. I was terrified because it improved so slowly, but now I walk completely normally. The leg is still probably still slightly weaker than the left but I don't have to think about it anymore.

Feel free to PM me about this....

JoAnn5
04-30-2009, 05:45 PM
I have not taken any meds for nerve pain, but i did have the anxiety & depression problems that began at around 3 months post-op. I did not have any swelling of my legs, feet or lips.... that must be in connection with the Lyrica, but not sure the anxiety is. Sorry i couldn't be more helpful :confused:

Peachy
05-02-2009, 03:36 PM
Anne, I also had significant weakness in my right leg with an abnormal gait. I was terrified because it improved so slowly, but now I walk completely normally. The leg is still probably still slightly weaker than the left but I don't have to think about it anymore.

Feel free to PM me about this....


Chris,

You have no idea how knowing this has cheered me up!!! My PT keeps telling me that he is seeing improvement, and that my right hip is not "kicking out" the way it used to when I put weight on that leg. So now, with what you've told me, I have become quite hopeful, and determined to work all the harder!

Will send you an email...can't wait to hear more!
Anne

Peachy
05-02-2009, 04:51 PM
Peachy and LynnMarie ...

One thing I'd ask both of you to keep in mind is that some degree of depression around the Ī3-4 month mark seems to be "not uncommon". Not everyone experiences it, but it's about the time where you start to feel good most of the time - yet a day of overdoing (that doesn't FEEL like overdoing) will knock you on your ass for a day or two.

Peachy, it's entirely possible the Lyrica is also causing effects (it could be the case with the edema) ... and it could be causing - or exaccerbating - the blues. LynnMarie, ditto with the Gabapentin. Both drugs affect people differently.

I think I've mentioned, I'm 14 months post-op and still on Gabapentin. My dosage is 100mg/3 per day, but I usually just take 100mg in the morning. The main reason I started on it was for the insane itching. Fortunately, the only side effect I ever had from it was a sense of everything being very "surreal" for the first few days. It knocked my depth perception for a loop, and MAN, was I sleepy.

I hope you ladies get things straightened out. Just a thought, but have either of you tried the other drug? I know of several people who couldn't tolerate one drug, but had no issue with the other.

Not sure about Lyrica, but Gabapentin has the ability to magnify pain meds so you need less. Are either of you still on pain meds - and at the same levels as earlier in recovery?

Regards,
Pam



Pam,

I'm still on 10 mg Oxycontin twice a day, and was told not to try to come off it until month 4, so I still have one month to go. I want to be off Lyrica before then because I would hate to be trying to get through withdrawal from both drugs at the same time!

It may sound strange, but I really haven't had a problem with pain since leaving the hospital. Originally, I was on 3 Oxy a day plus Percocet as needed (in addition to Lyrica). I stopped the Percocet and dropped the Oxy to 2-a-day the first month. The only time I feel discomfort in my back is in the evening when sometimes I've forgotten to take the Oxy by a couple of hours. I don't know if this is normal or "average", but I had expected to have much more of a problem with pain than I have. Also, I'm hoping "nerve" pain won't show up once I'm off Lyrica.

The nurse did mention switching me to Gabapentin, so, if I seem to have nerve pain after stopping the Lyrica, I will try that. Glad to hear it works so well for you!

Anne (Peachy)

naptown78
05-03-2009, 07:35 PM
I did not take Lyrica, but took Gabapentin for several months following my fusion for nervey sensations down my sciatic nerve that had been damaged prior to surgery from severe compression. I also was taking Topamax for migraines which I have taken for years. My pain management doctor finally noticed that and stopped the Gabapentin which was making me sleepy and upped my dosage of Topamax. Both drugs are anti-seizure drugs. The Topamax has helped too to decrease the nerve sensations in my leg plus added benefit, it has is weight loss. Not that I needed it, I had already lost so much weight following my surgery. Has anyone else taken Topamax for their nerve pain? Topamax has its own set of side effects however and takes months to get used to. There does not seem to be one perfect drug. AS for swollen lips, I agree , that sounds like an allergic reaction to SOMETHING and I would get myself to my PCP right away. Allergic reactions can become severe.
Kristy