Lyrica - Looking for Patient Experiences

Posted by iceblue @iceblue, Mar 12 3:33pm

I saw my doctor today, and was reminded again how lucky I was to (recently) land on his patient list. The visit was all about the side effects I had recently developed with Gabapentin – prescribed to treat SFN. He was quite concerned, and has switched me over to Lyrica effective immediately. I've done some research and it appears to have a shorter list of side effects, but I would be interested to know what people's actual experiences were/are – both good and bad.

Hey there @iceblue. I've been on Lyrica collectively for a couple of years. My only gripe is that it makes me tired. I was on Lyrica CR which I liked best bc I would take with or after dinner then down for the night anyway. I began Medicare this year and they wouldn't cover Lyrica CR so Iswitched to Pregabalin 2x day. It's ok, I'm fine on it and overcome the drowsy. Good luck!
Rachel

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iceblue, please keep us posted, I, would like to know how well it compares to gabapentin and if the side effects are less. I would love to have the pain relief without the side effects. Thanks and good luck. Helen

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@iceblue

I started taking Lyrica in Nov., '15, and all was well for a few weeks, but before I had moved up to the dosage goal, one day I went to town and I started feeling poorly. By lunch time I couldn't eat or drink because I was becoming disoriented. By the end of the day, on my way home, I couldn't complete a sentence. I'd say a few words but then I had no idea what I was going to say. By the time I got to the ER, I was incoherent, couldn't walk, had no memory and while I was in the ER cubicle I went tachycardic. I spent 2 or 3 nights in the hospital, and figured out that I was having a severe reaction to Lyrica. The bummer was that it was the first medication that had an effect on my sfn pain.

Most people don't react as badly as I, and it's really one of the better neuropathy meds. Don't be scared off because of my experience. I sure wish that I could have taken it.

Jim

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My neurologist told me Lyrica wouldn’t do much for me.

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do you have neuropathy and if so, what did he think would help your pain?

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@rwinney

Hey there @iceblue. I've been on Lyrica collectively for a couple of years. My only gripe is that it makes me tired. I was on Lyrica CR which I liked best bc I would take with or after dinner then down for the night anyway. I began Medicare this year and they wouldn't cover Lyrica CR so Iswitched to Pregabalin 2x day. It's ok, I'm fine on it and overcome the drowsy. Good luck!
Rachel

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I will add that I can't put my finger on if it actually relieves pain however, I'm not about to come off it bc I believe it's an important part of reducing odd feelings and effects from neuropathy.

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@neuroliz

My neurologist told me Lyrica wouldn’t do much for me.

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@neuroliz – Did your Neurologist say why he/she felt it wouldn't do much for you?

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I only took one 25mg pregabalin once and a few hours later my eyes were blurry. This is a very small dose so i figured pregabalin isn’t for me and never took it again.

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@ecc79

I only took one 25mg pregabalin once and a few hours later my eyes were blurry. This is a very small dose so i figured pregabalin isn’t for me and never took it again.

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@ecc79 – I would not have taken about one either!

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DAY ONE UPDATE: I took my first 50 mg pill last night at 9 PM – so it's been barely 12 hours.

I did not get tired enough to go to bed until midnight. I slept better than I have been sleeping on the Gabapentin – which means no nightmares, no sense of doom, no anxiety attacks. There was also no pain throughout the night (yipppeeee!). I still woke up 2 or 3 times, but didn't have to talk myself into a sense of calm.

The most amazing thing was that when I got up this morning, I was able to walk without feeling like my feet were riddled with arthritis! I got out of bed and walked – not painfully hobbled – to the bathroom! I honestly don't know whether this type of pain is neuropathy, arthritis, or something else – all I know is that I didn't feel it this morning and if this drug takes away that pain – BONUS.

I still have some burning pain this morning – but if things are still going well on Day 3, the doctor wants me to increase my dosage by 25 mg (total 75 mg) and see how that goes. I will see him again in 2 weeks for a review.

I realize this may be a one-off experience, but I cannot tell you how excited I am at this early stage! I'm looking forward to seeing whether this will extend over the longer term 🙂

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@helennicola

iceblue, please keep us posted, I, would like to know how well it compares to gabapentin and if the side effects are less. I would love to have the pain relief without the side effects. Thanks and good luck. Helen

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I take 500 mg of Gabapentin & I do the same thing with sentences. I forget what I am about to say & I have to think about it & I feel like a fool. I'm on a very low dose of Gabapentin. My dr. says this pill slows the brain down so I guess that is why we react like that. I would like to know more too so keep us posted. Best of luck.

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@tigreyes2004

I take 500 mg of Gabapentin & I do the same thing with sentences. I forget what I am about to say & I have to think about it & I feel like a fool. I'm on a very low dose of Gabapentin. My dr. says this pill slows the brain down so I guess that is why we react like that. I would like to know more too so keep us posted. Best of luck.

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@tigreyes2004 – I can't even say I've become forgetful because that would be an understatement. The day I realized I had forgotten about one of the lap quilts I had made only a few weeks before – that was the day that totally freaked me out. How does one forget that they made a lap quilt? A VIBRANT lap quilt!!! I know I was grieving – but even with grief that was over the top. There are many other examples, but that was the one that I found most disconcerting. I'm hoping Lyrica allows my brain to more fully function while still reducing the pain. Perhaps an impossible request….

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@tigreyes2004

I take 500 mg of Gabapentin & I do the same thing with sentences. I forget what I am about to say & I have to think about it & I feel like a fool. I'm on a very low dose of Gabapentin. My dr. says this pill slows the brain down so I guess that is why we react like that. I would like to know more too so keep us posted. Best of luck.

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Thank you for your post. I have been a bit forgetful but I usually attribute it to my advanced age. Maybe the high doses of gabapentin are the root cause. I usually remember my conversations but when it comes to remembering a person’s name, it takes me a minute or two and sometimes I can only remember the surname. Hmmm…. I need the gabapentin more than I need my memory of everyone’s name. But maybe it is more the drug and not early dementia that is causing my problem.

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@iceblue

DAY ONE UPDATE: I took my first 50 mg pill last night at 9 PM – so it's been barely 12 hours.

I did not get tired enough to go to bed until midnight. I slept better than I have been sleeping on the Gabapentin – which means no nightmares, no sense of doom, no anxiety attacks. There was also no pain throughout the night (yipppeeee!). I still woke up 2 or 3 times, but didn't have to talk myself into a sense of calm.

The most amazing thing was that when I got up this morning, I was able to walk without feeling like my feet were riddled with arthritis! I got out of bed and walked – not painfully hobbled – to the bathroom! I honestly don't know whether this type of pain is neuropathy, arthritis, or something else – all I know is that I didn't feel it this morning and if this drug takes away that pain – BONUS.

I still have some burning pain this morning – but if things are still going well on Day 3, the doctor wants me to increase my dosage by 25 mg (total 75 mg) and see how that goes. I will see him again in 2 weeks for a review.

I realize this may be a one-off experience, but I cannot tell you how excited I am at this early stage! I'm looking forward to seeing whether this will extend over the longer term 🙂

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Yayyy for you @iceblue! 😊 Fingers crossed.

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@iceblue

DAY ONE UPDATE: I took my first 50 mg pill last night at 9 PM – so it's been barely 12 hours.

I did not get tired enough to go to bed until midnight. I slept better than I have been sleeping on the Gabapentin – which means no nightmares, no sense of doom, no anxiety attacks. There was also no pain throughout the night (yipppeeee!). I still woke up 2 or 3 times, but didn't have to talk myself into a sense of calm.

The most amazing thing was that when I got up this morning, I was able to walk without feeling like my feet were riddled with arthritis! I got out of bed and walked – not painfully hobbled – to the bathroom! I honestly don't know whether this type of pain is neuropathy, arthritis, or something else – all I know is that I didn't feel it this morning and if this drug takes away that pain – BONUS.

I still have some burning pain this morning – but if things are still going well on Day 3, the doctor wants me to increase my dosage by 25 mg (total 75 mg) and see how that goes. I will see him again in 2 weeks for a review.

I realize this may be a one-off experience, but I cannot tell you how excited I am at this early stage! I'm looking forward to seeing whether this will extend over the longer term 🙂

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that is great news Iceblue, for now I think I will continue the gaba, but good to know your positive experience w/Lyrica. I take it at 9:30 and usually turn the lights out at 11:30. I do experience crazy sometimes bad dreams and often anxiety plus forgetfulness and off/on blurry vision, impatience and lack of energy. But, on 400mg. 1xday at bedtime I can hold off taking it again until bedtime and I sometimes use a CBD salve on my hands before bed. For some reason I have very little pain during the day. Fingers crossed for both of us. Helen

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