Lyrica - Looking for Patient Experiences

Posted by iceblue @iceblue, Thu, 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.

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.

Liked by lioness

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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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@maryflorida

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

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Hi @maryflorida, You can edit your profile and add your picture. The how to steps are in the Getting Started on Connect guide link at the bottom left of every Connect screen in the footer area. Here's the direct link to the section with the how to steps:
https://connect.mayoclinic.org/get-started-on-connect/#add-edit-profile

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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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@maryflorida Wow that is interesting Evidently you system coulde,nt tolerate this Different body systems work differently . What did he prescribe for your pain

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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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@maryflorida You certainly have the right to go to any Dr. If your rheumatologist hasnt help has you PCP any ideas? If you need a referral ask her for a neurologist referral maybe they will be able to put the pieces together and get a treatment for you . But since Lyrica acted on you like a allergy maybe some allergy test would help . This is a hard one to solve, Im just giving you some ideas as to who to turn to. Good luck and let us know we here care on connect . Have you thought about going to Mayo they are a great research hospital that might better help you ?

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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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@dckuke @maryflorida Hi. I have Small Fiber Polyneuropathy, via skin punch biopsy, with a b12 deficiency as my underlying cause. I have taken Lyrica for over a year and have no problems being on it. I've adapted to initial drowsiness and it no longer bothers me. I had been on Gabapentin (bc it was cheaper and easier to get insurance coverage) and Lyrica throughout the past 4 years and finally landed back on Lyrica. My first ever pain reliever was tramadol but, it did nothing. Then, Nucynta until my insurance changed and it was not covered. Very expensive drug! I switched to Norco (Hydrocodone) and continue to use it regularly along with medical marijuana as needed.

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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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That’s encouraging to hear your experience regarding turmeric. I have tried everything from the common prescription drugs, CBD oils, creams and several supplements but give up on it all except a few choice vitamins and my daily dose of turmeric. I really believe it helps a lot but I do not see many examples of people commenting on turmeric at least in the effectiveness regarding PN. I was wondering if it was the placebo effect or if turmeric really does help. I think it does. I feel better just using turmeric. I would like to hear others experience if indeed they gave this a good honest go.

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@ecc79

That’s encouraging to hear your experience regarding turmeric. I have tried everything from the common prescription drugs, CBD oils, creams and several supplements but give up on it all except a few choice vitamins and my daily dose of turmeric. I really believe it helps a lot but I do not see many examples of people commenting on turmeric at least in the effectiveness regarding PN. I was wondering if it was the placebo effect or if turmeric really does help. I think it does. I feel better just using turmeric. I would like to hear others experience if indeed they gave this a good honest go.

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@oldkarl I take 1 tablespoon of turmeric daily as part of my overall supplement plan. Do I immediately know it helps…no. After researching its benefits, it made sense for my neuropathy and overall health. Too much of anything may not be good, especially if levels are off. My opinion is to always run it by your Dr and keep up on blood testing and checking levels for safety, especially if you have a pre-existing condition. Good luck.

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Good morning to everyone trying to find the right medication. @iceblue, I am very interested in your experiences with Lyrica and your comparison to gabapentin. Looks like you have quite an auditience. Thanks for introducing the subject. I think many of us made this decision or had it made for us in the early stages of small fiber neuropathy (SFN). Today, I would do a lot of research before changing. Do you just change…no tapering down or up?

Here's how new I was 7 years ago. My neurologist prescribed the gabapentin after cervical surgery. As things progressed, he wanted me to see a rheumatologist just to make sure there were no immunity issues. When I saw her, I remembered her because she introduced me to Voltaren cream several years before my TKR.

So here is how it went down. She was concerned about the gabapentin and wanted me to change to Lyrica. If I couldn't agree with that, she told me that I could not be a patient of hers. I returned to my neurologist and laid it out. I decided to stay with the neurologist and we would review options. Somehow there were some ethical issues floating around. I was way too new to everything including neuropathy. But that was how it all began. And that is when I knew that knowledge was power.

May everyone be protected and safe today.
Chris

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@rwinney

@dckuke @maryflorida Hi. I have Small Fiber Polyneuropathy, via skin punch biopsy, with a b12 deficiency as my underlying cause. I have taken Lyrica for over a year and have no problems being on it. I've adapted to initial drowsiness and it no longer bothers me. I had been on Gabapentin (bc it was cheaper and easier to get insurance coverage) and Lyrica throughout the past 4 years and finally landed back on Lyrica. My first ever pain reliever was tramadol but, it did nothing. Then, Nucynta until my insurance changed and it was not covered. Very expensive drug! I switched to Norco (Hydrocodone) and continue to use it regularly along with medical marijuana as needed.

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@ rwinney, thanks for your story. I get sick on about everything, but hydrocodone works well for me, lowest dose. Now I am going to see if someone will do the skin punch biopsy so i can know I don't have lupus, Sgogrens (sp?), or rheumatoid arthritis. That's the first test they are going to do, then "maybe" some will do the skin punch.

me

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@maryflorida

@ rwinney, thanks for your story. I get sick on about everything, but hydrocodone works well for me, lowest dose. Now I am going to see if someone will do the skin punch biopsy so i can know I don't have lupus, Sgogrens (sp?), or rheumatoid arthritis. That's the first test they are going to do, then "maybe" some will do the skin punch.

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I wish you luck in determining your causes. It is complete frustration not knowing. Are you having a spinal tap to rule out auto immune diseases first, then skin punch biopsy? I think that's the way to go. It helped me gain clarity.

Hydrocodone has worked well for me too at 5mg and although I'm aware of the opiod stigma, it has been a real life saver.

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@artscaping

Good morning to everyone trying to find the right medication. @iceblue, I am very interested in your experiences with Lyrica and your comparison to gabapentin. Looks like you have quite an auditience. Thanks for introducing the subject. I think many of us made this decision or had it made for us in the early stages of small fiber neuropathy (SFN). Today, I would do a lot of research before changing. Do you just change…no tapering down or up?

Here's how new I was 7 years ago. My neurologist prescribed the gabapentin after cervical surgery. As things progressed, he wanted me to see a rheumatologist just to make sure there were no immunity issues. When I saw her, I remembered her because she introduced me to Voltaren cream several years before my TKR.

So here is how it went down. She was concerned about the gabapentin and wanted me to change to Lyrica. If I couldn't agree with that, she told me that I could not be a patient of hers. I returned to my neurologist and laid it out. I decided to stay with the neurologist and we would review options. Somehow there were some ethical issues floating around. I was way too new to everything including neuropathy. But that was how it all began. And that is when I knew that knowledge was power.

May everyone be protected and safe today.
Chris

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Hi Chris, hope you are well and successfully coping with this new “normal” existence we are all experiencing. I was wondering if you ever tried any of the suggested prescriptions for the horrible itching you had and if it worked for you. Thanks, Helen

REPLY
@artscaping

Good morning to everyone trying to find the right medication. @iceblue, I am very interested in your experiences with Lyrica and your comparison to gabapentin. Looks like you have quite an auditience. Thanks for introducing the subject. I think many of us made this decision or had it made for us in the early stages of small fiber neuropathy (SFN). Today, I would do a lot of research before changing. Do you just change…no tapering down or up?

Here's how new I was 7 years ago. My neurologist prescribed the gabapentin after cervical surgery. As things progressed, he wanted me to see a rheumatologist just to make sure there were no immunity issues. When I saw her, I remembered her because she introduced me to Voltaren cream several years before my TKR.

So here is how it went down. She was concerned about the gabapentin and wanted me to change to Lyrica. If I couldn't agree with that, she told me that I could not be a patient of hers. I returned to my neurologist and laid it out. I decided to stay with the neurologist and we would review options. Somehow there were some ethical issues floating around. I was way too new to everything including neuropathy. But that was how it all began. And that is when I knew that knowledge was power.

May everyone be protected and safe today.
Chris

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Chris, so did you stay with gabapentin or change to Lyrica? And how are you doing with your PN these days? Cheers, Terry

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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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Hello. I was on low dose Gabapentin; 100mg, three times daily. It made me feel like I was in a Salvdor Dahli painting that is, everything was surreal. I hated it. It worked well at first thought. I had vision disturbances (double vision lasting up to 40 minutes several times per day and a pattern in my vision field-not too bad, I could put up with that but weird), which are very common to both Gabapentin and Lyrica. Finally I switched to Lyrica by a slow taper off Gaba so little to no pain coverage and it was brutal. Then began low dose Lyrica, I think 25mg. three times daily to be increased to I think 75mg. three times daily max dose. Well, the Lyrica had the same side-effects only way worse! I researched how to taper off Lyrica and begin Gabapentin and as it turned out, I did NOT have to taper all the way off one to begin another. It was a very reputable source and I spoke with a pharmacist. So I was able to just switch one dose of Lyrica back to 100mg. Gaba, then two the next day and by the third day I was off Lyrica and back on the Gaba. Well, miracle, I do not have the unwanted side-effects of the Gaba like I did when I was first on it!!! I'm still at a sub-therapeutic dose at 200mg, three times daily. It seems I need to increase and increase and that troubles me. I do have some of the same side-effects but not nearly as bad. Idon't like this anti-seizure catagory of drugs. They weird me out. They do make everything just sort of "roll off" , a detached feeling. Which has it's benefits. Neuropathy is painful beyond words. Just an awful, awful affliction. Be well, warm regards, Sunnyflower

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