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Old 03-17-2010, 11:13 PM #1
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Default Question for only those having personal experence with Lyrica

Hello everyone!

I have been dealing with an idiopathic small-fiber neuropathy for the past five years, and have had relatively good success using Cymbalta 60 mg daily.

Indeed, Cymbalta has given me an average of 75% or so good days free of tingling or burning. I have also had several lengthy remissions where I was able to be drug-free (Small-Fiber Neuropathy CAN go into lengthy remissions).

I recently wanted to test Lyrica as a stand-alone drug to see how it would deal with that small-fiber burning at a relatively low dose. As such, I just completed a one-week trial as follows (and I had never used it before):


1) During the first four days I took Lyrica 50mg midnight and 50mg noon, for a total dose of 100mg / day.

2) I then stepped up the dose for two days via 100/mg at midnight and then 50mg at noon, for a total of 150mg / day.

3) I then tapered off and discontinued.


I noticed that after the first day at 100mg / day my burning disappeared. However, I felt very spacey (almost high) starting the very first day. That feeling came and went over the one-week test period. I should also mention that I did not put on any weight, perhaps due to the low dose and short duration.

And now my question to those who have experence with Lyrica:


If I were to have continued taking Lyrica at a stable dose of 100 - 150 /mg per day without any increase over time, would the initial spacey feeling have disappeared after a week or two as my brain got used to the drug?

Also, is it likely that my weight would have remained stable (I am not a diabetic or on any special medication although I take a water pill for blood pressure)?

I appreciate any feed-back.

Let me conclude by saying I am pleased to find that Lyrcia seems to be an effective small-fiber pain drug backup if Cymbalta ever lost its effectiveness (which it never has during the five years I have taken it on and off).

Thank you!

David
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Old 03-18-2010, 12:36 AM #2
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Default Lyrica.....

I hesitated to respond right away (for fear of sounding like a 'buzzkill') But as i read your post a 2nd time i decided to because your battle w/PN sounds pretty identical to mine. I haven't been fortunate enuf to experience any sort of 'remission' however.

You are very wise to be asking and checking into this Med before jumping right into it. I trusted my Neuro and blindly dove into a nightmare straight from the pit of HELLLooo by the way ......forgot to properly introduce myself.

I have nothing good to say about this med. I truly consider it one of my biggest regrets in life. But each of us are unique to our chemical make-up, so I'm sure you'll probably get more positive feedback from someone else.

There is such a broad spectrum to what you are wanting to know, and there are some very VERY knowledgeable PNers here who will give you a much better overview.
All I can offer you is my experience......
The 'dopey/foggy' feeling was something I thought I could learn to adapt to. What I did NOT expect, however, was to blow up like a hot air balloon, alarming rapid weight gain and upper abdominal bloating, became very shortwinded and i produced enuf gas to re-fuel the gulf coast.....
......and that was only the best part.
Now, i am facing major dental issues and having to get teeth pulled because they began to decay so rapidly I could'nt catch it in time.....Before this i have never even had a single cavity.
If you browse down the threads a way, you will see some very alarming discussion about this particular issue via other members.

I'm not normally a negative individual, but this particular issue has me so peeved i can't even see straight.

When I realized how badly this med was backfiring on me, I tried talking to my Neuro about it and he stared right thru me and wrote out a NEW script for "Lexapro" for my "Anxiety" and wrote in my chart something along the lines of "Hysteria...." ........ i tore up the script and put it in a neat little pile on his desk and never looked back.

That was 2 yrs ago. I was on the med for 4 months.
I have finally lost the 35 pounds i gained and am beginning to feel like a human being again.

I would love to get compensated for the $6,000 in dental fees, should this pharmaceutical lawsuit come to fruition.

Anyway, welcome to NT. You will find many caring folks here.........
Best wishes
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Old 03-18-2010, 08:30 AM #3
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I have everything to say good about this med.
It gas been a lifesaver for me and I consider it to be the only reason I'm able to still work at age 65, and lead a somewhat "normal" life.
I went to Ireland this summer and enjoyed every minute of it, even the walking thru the cities. I just have to take it easy and rest often. I love going to NYC and window shop and see the sights - walking involved.
I do have one aside tho- it has caused increased appetite (carb cravings) and weight gain due to the increased appetite. I am 6'1" & was 220lbs and now am at 245-248 lbs., & am a 'chocoholic'.
I was on Neurontin/gabapentin for almost 7 yrs and it started to fail to work. I switched to Lyrica 3+ yrs ago ( almost as soon as it came on the market) and have never looked back.
Sometimes I tend to have 'moments' of forgetfulness ('Where'd I put my keys?' ) but that is about the only side effect aside from the weight.
I take 600 mgs. Lyrica/day - 200mgs, 3x/day & 400 mgs/day Tramadol - 100mgs 4x/day.
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Old 03-18-2010, 08:39 AM #4
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I have autonomic neuropathy, as well as sensory.

While Lyrica helped the pain, I got lost in my town.....of 6000 people. At some point, I may try it again....later.

Right now, I am attempting to gut things out.....it isn't going so well.
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Old 03-18-2010, 11:05 AM #5
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Default Question for Bob

Quote:
Originally Posted by nide44 View Post
I have everything to say good about this med.
It gas been a lifesaver for me and I consider it to be the only reason I'm able to still work at age 65, and lead a somewhat "normal" life.
I went to Ireland this summer and enjoyed every minute of it, even the walking thru the cities. I just have to take it easy and rest often. I love going to NYC and window shop and see the sights - walking involved.
I do have one aside tho- it has caused increased appetite (carb cravings) and weight gain due to the increased appetite. I am 6'1" & was 220lbs and now am at 245-248 lbs., & am a 'chocoholic'.
I was on Neurontin/gabapentin for almost 7 yrs and it started to fail to work. I switched to Lyrica 3+ yrs ago ( almost as soon as it came on the market) and have never looked back.
Sometimes I tend to have 'moments' of forgetfulness ('Where'd I put my keys?' ) but that is about the only side effect aside from the weight.
I take 600 mgs. Lyrica/day - 200mgs, 3x/day & 400 mgs/day Tramadol - 100mgs 4x/day.
Congrats on the quality of life improvement! It IS encouraging to hear things like what you've shared.....it gives hope for those who may begin to feel like they'll never get their life back...... I sincerely am happy for you!

I noticed you had recently posted regarding dental issues (actually you and I hit the dental forum about the same time) and received good advice from Bryana - she's a LOAD of knowledge!
What is your take on the Lyrica/Dental hullaballooo? I'm trying to find out more on this. I know you're doing so well on Lyrica, but do you feel 100% sure there is no connection to your recent dental flare-up? I know this is a loaded question.....and I'm not trying to start a debate ....just curious to your opinion on this? I haven't seen hide nor hair of the poster who began the thread on the Phizer lawsuit, so I don't even know if I want to spend the time surfing the web. Would rather just stick here with my 'family'.
Whats yer take on this ?
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Old 03-18-2010, 11:28 AM #6
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I took Lyrica for about a year and have nothing good to say about it.

I was taking it for nerve pain and neuro problems caused by a spinal cord injury. Even though I was at a relatively high dose, it dampened, but did not stop my pain, tics, etc...

What it did do was cause cavities, mental confusion and massive and rapid weight gain.

Worst of all, stopping this drug can be absolute hell. Withdrawl can be pure agony and cause seizures even in patients who've never before experienced them.

Others feel differently about Lyrica and I wish you well in making a decision that is right for you.

Cheers
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Old 03-18-2010, 12:41 PM #7
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Default my body likes it

Here is my story. PN for 1.5 years. Lyrica for that time. I have not gained weight and it has not produced dental issues. I am on 100 mg in the evening. Yes, upon occasion it has made my feel "high" or spacey. It comes and goes and I try to just work anyway. But I wouldn't be sleeping without out due to the pins and needles. I would love to heal and get off of it but at present try to be grateful I found something that works with so few side effects.

Good luck to you in your med search.
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Old 03-19-2010, 07:37 AM #8
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Quote:
Originally Posted by Rrae View Post
..........What is your take on the Lyrica/Dental hullaballooo? I'm trying to find out more on this. ....just curious to your opinion on this? I haven't seen hide nor hair of the poster who began the thread on the Phizer lawsuit, so I don't even know if I want to spend the time surfing the web. Would rather just stick here with my 'family'.
Whats yer take on this ?
I haven't spoken to the periodontist about it yet and cannot find any conclusive reports or evidence... other than a few people that could have been coincidental.
One poster says that it is an issue with all anti-seizure meds, but I cannot find any tests or results to that claim.
I really don't know if there's a connection. Pfizer would obviously deny it until someone other than them offered conclusive proof.
My age, previous perio issues before ever taking Lyrica, and being a smoker confuses the issue even more.
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Old 03-19-2010, 08:05 AM #9
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Hi. You may also want to ask your doc about increasing Cymbalta. I am on 120 and have been told some have to get to that dose for pain relief. Since you have found relief in the current you may have even more on a higher dose. I had bee o Lyrica but switched to neurontin. For me with most meds it takes awhile for the side effects to wear off. I get similar as you state with each increase of neurontin but with a few days to a week they go away. So if the side effects are tolerable but like nausea or spacy I try to give it a chance and stay in for those days. Of course if it is not tolerable then call the doc. Feel better
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Old 03-19-2010, 10:32 AM #10
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Default Thanks for that :)

Quote:
Originally Posted by nide44 View Post
I haven't spoken to the periodontist about it yet and cannot find any conclusive reports or evidence... other than a few people that could have been coincidental.
One poster says that it is an issue with all anti-seizure meds, but I cannot find any tests or results to that claim.
I really don't know if there's a connection. Pfizer would obviously deny it until someone other than them offered conclusive proof.
My age, previous perio issues before ever taking Lyrica, and being a smoker confuses the issue even more.
Yes, and it's pretty well-known that ANY med that causes dry mouth can be a culprit, so I reckon we'll never really know.
I've been on and off so many meds during the past, it would be too much of a long shot trying to pin it all on Lyrica, and I'd rather spend whatever remaining years I have on enjoying the good things in life!
Thanks for weighing in!
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