Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-22-2013, 09:44 PM #1
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Default Prescribed Lyrica, anyone taking it have advice?

Has anyone had any experience with this drug. From what I've read it looks quite spooky. I tried Neurontin and had bad experience with it. Any feedback is greatly appreciated.
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Old 06-23-2013, 12:43 AM #2
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KathyWP,
I have been on Lyrica for peripheral neuropathy (PN) associated with my CRPS since 2008. I find it does help with some of the needles/pins type of pain. I still get PN on occasion. I also have stabbing pain that is not effected by the Lyrica.

Neurontin makes me whacky. If I take it I need to lay down shortly after taking it. I do not have the same side effects with Lyrica as I do with Neurontin.

Hoping for better days ahead for you.
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Old 06-23-2013, 02:35 AM #3
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I too take Lyrica. It helps my pain a lot. However, as the commercials say, weight gain is a side effect and that has been the case with me.
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Old 06-23-2013, 04:23 AM #4
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I've had experience with both drugs. I was on Lyrica after amitriptyline stopped working for me, and the dose was titrated up pretty quickly to max dose. It worked well for me, but after about 6 months I had a couple of episodes of all-over body electric shock things which were horrible! My doc thought it best to take me off the Lyrica, and put me on Gabapentin (Neurontin).

Gabapentin didn't do much for the pain. Over the next six months my CRPS continued to spread, the pain was getting worse, and I was taking 1200mg, 900 and 1200mg ever day. I had a couple of bouts of severe sickness, diarrhoea and GI pain, which were attributed each time to a stomach bug (none of my family got them though). After the second time, I did a lot of reading up. During the sickness I couldn't keep my tabs down for three days, and I didn't notice any worsening of my pain levels, so I decided to come off the Gaba myself, over about a week. Nothing happened, apart from my stomach symptoms going and me feeling a lot brighter. My pain levels had been worsening anyway, and that continued, but wasn't faster. I was off all meds for about three weeks, but couldn't deal with some intense new stabbing pains that just made me sob with fear.

I couldn't bear to go back on the Neurontin, and having had the electric shock things a couple more times I was sure they were the CRPS and not the Lyrica, so I thought I'd give it another go. I take just 50 mg morning and night, and it has helped with the worst of the pain, so instead of increasing the dose I have kept it at that and I just take more if the pain is bad. I've only had to twice since being back on low dose Lyrica. I'm more awake, my stomach is fine, and my pain feels more under control so I've been more active.

I told my pain doc what I'd done the next time I saw her, and she approved and said the Gaba could well have caused my stomach problems as it 'can be nasty stuff'. Hmm. I read a lot about the two drugs, and basically Lyrica is a particular part of Neurontin isolated and concentrated to do a specific job. Which is why you take so much more Neurontin as a dosage - there's all sorts of other stuff in it as well as the Lyrica part. Keeping it low dose means I haven't noticed the weight gain part this time.

So basically, I would take Lyrica over Neurontin ever day of the week and twice on Sundays. It's the only drug I've found that definitely does SOMETHING for some of the particular CRPS type pains. I still have pain, but it is manageable most of the time, and I count myself lucky at the moment.

Good luck with whatever you decide!

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Old 06-23-2013, 01:29 PM #5
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Ditto, what DJhasty said is my experience as well. The Lyrica is easier on my stomach and I'm less tired however yes, slight weight gain
I don't take the max dose (3 per day) my Dr. would like but I can tolerate 1-2
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Old 06-24-2013, 10:17 PM #6
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Thumbs up Thanks for your replies.

I am taking Lyrica now. My insurance company refused to pay for it and suggested I use Neurontin. I told my pcp that IU had tried Neurontin and I would not take it again. Her office told the insurance company I had taken it before and they had to argue for almost a week to get approval, which they finally did. I am starting off on 100mg of Lyrica for two weeks with and increase to 200mg. It's pretty low dose I think. Your comments are greatly appreciated.
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Old 06-25-2013, 12:35 AM #7
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Quote:
Originally Posted by KathyWP View Post
I am taking Lyrica now. My insurance company refused to pay for it and suggested I use Neurontin. I told my pcp that IU had tried Neurontin and I would not take it again. Her office told the insurance company I had taken it before and they had to argue for almost a week to get approval, which they finally did. I am starting off on 100mg of Lyrica for two weeks with and increase to 200mg. It's pretty low dose I think. Your comments are greatly appreciated.
Started on Neurontin, blew my stomach up after two days, switched to Lyrica and took it for two weeks till I got arrhythmia’s and was taken off that post-haste. It did knock a serious dent in the pain though...
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Old 06-25-2013, 04:30 AM #8
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I've used both gabapentin and pregabalin and although I would try gabapentin again, I wouldn't touch pregabalin with a bargepole personally. Gabapentin worked a small amount on my nerve pain but the effects wore off after about 3 months. I successfullybhad a few goes on it with breaks once the effect declined. I never had any problems coming off it. The only side effect I had was slightly slurred speech which noone but me noticed. Pregabalin was pushed as a wonder drug that would work for longer with no side effects. I started it in the middle of a 6 month long flare and didn't get any good effect from it at all. However it stopped me being able to orgasm and messed with my sleep so badly I asked to come off it. It was during this time that I had some scary cognitive effects also although I cannot be sure it was that (although I do feel it was). Giving it up was hellish, I haven't met anyone who's doctor warned them of withdrawal. 6 weeks of brain zaps and major insomnia. Never ever again!
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Old 06-26-2013, 06:43 PM #9
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I've been recently dx'd with Diabetes. Great fun! on top of the RSD/ TOS, disc, amongst other things. Anyway,
I been using / drinking Glucerna a lot lately.
So I went to amazon.com, where you can order it by the case *I drink one a day, after my insuliin in the AM, so, 24 is OK. They'll start delivering in a week or so, and then, every month thereafter, unless I stay stop.
I think that's cool.
And, it's a lot less expensive, although, if you have a WRONG AID or supermarket near you, they usually print out coupons when you buy it.
It's a good way to loose weight, if you're on Lyrica (I'm not). But, you might wanna give it a try. It's carbs and calories carbs equals calories so, give it a try!

P

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Old 06-26-2013, 08:47 PM #10
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Red face Lyrica helpful but.....

I have many allergies and the day I went to my rheumatologist I ended up with laryngeal edema while waiting in his office. By the time I saw him, I could hardly speak. Thank goodness he had a handy needle of benedryl to inject. I had to quit lyrica that day and the next six weeks were not pleasant as I went through withdrawal. I forget how long I had been on it. The good part was losing over twenty pounds!
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