Lyrica - Looking for Patient Experiences

Posted by iceblue @iceblue, Mar 12, 2020

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.

@dckuke

After using Gabapentin with little relief, Nucynta with great pain relief $700/mo and Cymbalta with memory loss, I started with Lyrica. Over time, my Rx was adjusted to 2.25 2x daily. Other than slight dizzy feeling, I have had no negative effects. I have plantar fasciitis, arthritis in all joints, and serious neuropathy up to thighs and my fingers. Lyrica and Tramadol generally keep pain manageable—some days much worse. When it is wearing off, the pain goes up. And, if I am even one hour late taking the combination, the pain intensifies greatly and quickly. One note; the fiery feeling on top layers of skin is not well-controlled. I use a CBD ointment, which calms that down almost immediately and last for about 5 hours.

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According to the Christopher Reave Foundation nurse, neuropathic pain changes over time. A drug that worked for us a few years ago, may no work anymore. Sometimes we need a stronger dose or maybe another drug will help with the pain. I have increased my dosage for gabapentin and it still works for me, but I may have to try something else soon.

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Lyrica did not help with my neuropathic pain and my hair fell out including my eyelashes and eyebrows. Because of my spinal cord injury, my autonomic nervous system does not function well. It affects everything from my esophagus and stomach to all my organs including my intestines and my pancreas, liver, kidneys, adrenal glands, bladder, bowels, etc. My immune system is compromised and nothing works like it used to. The burning pain wakes me up at night and I have not had a full night of sleep in eight years. I try to remain as positive as possible and enjoy the simple pleasures in life.

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@darlingtondoll

According to the Christopher Reave Foundation nurse, neuropathic pain changes over time. A drug that worked for us a few years ago, may no work anymore. Sometimes we need a stronger dose or maybe another drug will help with the pain. I have increased my dosage for gabapentin and it still works for me, but I may have to try something else soon.

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@darlingtondoll We all have to do what helps us even if we have to switch meds as our body gets use to some then we have to find something different . The one muscle rub that I like it works for me is Topricin cream for neuropathy and fibromyalgia . My fibro is worse in the back ,shoulder neck area so I use it on there and it helps also the thighs as I have said . I use more magnesium also them normal people whatever those are now haha

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@dckuke

Even at high doses, GABA had no noticeable effect and Cymbalta caused serious memory problems. Lyrica helps greatly. If I am late taking it, I suffer—no exaggeration. With numb feet and Lyrica, I do feel dizzy often. This gives very good relief when taken with my Tramadol. I have tried several pain meds that almost completely eliminated pain, but as you would expect, they were much more dangerous and addicting. Despite daily pain and some rough ones, I am trying to stay at this level of relief. Lyrica makes that possible.

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@dckuke. Hi, I'm on GABA @ 1200mg/day and still have pain in the afternoon that lasts until I fall asleep. When I wake I have almost no pain but by mid afternoon I'm in agony again. I will talk to my PCP about switching to Lyrica but I'd appreciate knowing how you made the switch. did you just stop the GABA one day & start with Lyrica? What GABA dose were you on and what Lyrica dose did you start?
Thanks

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@jimhd

@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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Last year since I couldn't tolerate Gabapentin, my rheumatologist prescribed Lyrica. One pill and I became so sick my husband took me to the ER. While there, I asked the doctor why I was so sick and his reply was, "Well, you took Lyrica, didn't you?" One pill was one too many for me!

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@maryflorida

Last year since I couldn't tolerate Gabapentin, my rheumatologist prescribed Lyrica. One pill and I became so sick my husband took me to the ER. While there, I asked the doctor why I was so sick and his reply was, "Well, you took Lyrica, didn't you?" One pill was one too many for me!

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Hi @maryflorida, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with Lyrica. Are you able to tell us a little more about your diagnosis and why your rheumatologist prescribed Lyrica?

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I think she prescribed Lyrica because I seem to have bad reactions to the other pain meds. After 10 years of off and on pain, the last three weeks I have been in much more pain. I asked my Primary Doctor to please run some tests on me, primarily skin biopsy to see if it is, in fact, small fiber neuropathy, not just a guess. He is sending me to a rheumatologist who didn't know what was wrong with me. She said she couldn' t help me. Should I just go to this new one, in case, and then ask for maybe a neurologist instead? I don't know whom to see. btw, my husband goes to Mayo since he had a kidney transplant last year, but AARP Medicare is not on their list I don't think.

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I don't know where to post my picture.. MaryFlorida..

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@maryflorida

I think she prescribed Lyrica because I seem to have bad reactions to the other pain meds. After 10 years of off and on pain, the last three weeks I have been in much more pain. I asked my Primary Doctor to please run some tests on me, primarily skin biopsy to see if it is, in fact, small fiber neuropathy, not just a guess. He is sending me to a rheumatologist who didn't know what was wrong with me. She said she couldn' t help me. Should I just go to this new one, in case, and then ask for maybe a neurologist instead? I don't know whom to see. btw, my husband goes to Mayo since he had a kidney transplant last year, but AARP Medicare is not on their list I don't think.

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Have neurologists helped with your peripheral neuropathy? I have neuropathy toes to thighs and in my hands and get by on Lyrica and Tramadol. A pain management doctor could only offer surgical implants to help with the legs and tested a pain med that I may have to resort to Nucynta (strong and expensive. The two neurologists that I saw only verified how bad my case is and suggested the exact same medication as our family doctor, podiatrist and pain management had written for me.

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I have had neuropathy in my limbs over the years. Lyrica has never done me any good. Tramadol and turmeric work better. Plain turmeric, 1/4 tsp in 6 oz of warm water works better. As for Lyrica, sneezing on a frog works better.

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@dckuke

Have neurologists helped with your peripheral neuropathy? I have neuropathy toes to thighs and in my hands and get by on Lyrica and Tramadol. A pain management doctor could only offer surgical implants to help with the legs and tested a pain med that I may have to resort to Nucynta (strong and expensive. The two neurologists that I saw only verified how bad my case is and suggested the exact same medication as our family doctor, podiatrist and pain management had written for me.

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Did they diagnose it with skin fiber biopsies? None have been done for me… No, the neuropathy doctor said it was due to my kidneys leaking calcium. She prescribed another drug which made me sick too; my brother-in-law is a pharmacist and he said not to take things that make me sick…. I checked with a kidney doctor and he said my kidneys are fine. The only thing I can take without being sick is hydrocodone, but I hate taking it.

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@oldkarl

I have had neuropathy in my limbs over the years. Lyrica has never done me any good. Tramadol and turmeric work better. Plain turmeric, 1/4 tsp in 6 oz of warm water works better. As for Lyrica, sneezing on a frog works better.

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Ha! never tried sneezing on a frog yet! I'm on warfarin and my INR nurse does not want me to take turmeric. I am ok, sort of, with the hydrocodone, but since I don't have a solid diagnosis, I just want to know what the heck is wrong with me for sure. I do have all the symptoms of small fiber neuropathy and none of the ones for lupus, rheumatolic arthritis.. Did you have the skin biopsy?

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