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)


advertisement
Reply
 
Thread Tools Display Modes
Old 06-22-2013, 09:44 PM #1
KathyWP's Avatar
KathyWP KathyWP is offline
Junior Member
 
Join Date: Sep 2006
Location: Kentucky
Posts: 59
15 yr Member
KathyWP KathyWP is offline
Junior Member
KathyWP's Avatar
 
Join Date: Sep 2006
Location: Kentucky
Posts: 59
15 yr Member
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.
__________________
KathyWP
KathyWP is offline   Reply With QuoteReply With Quote
Old 06-23-2013, 12:43 AM #2
Djhasty's Avatar
Djhasty Djhasty is offline
Member
 
Join Date: Nov 2012
Location: Omaha Nebraska
Posts: 142
10 yr Member
Djhasty Djhasty is offline
Member
Djhasty's Avatar
 
Join Date: Nov 2012
Location: Omaha Nebraska
Posts: 142
10 yr Member
Default

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.
__________________
Djhasty
- CRPS Type II with migraine, Dystonia and spasticity
- Diagnosis 2010 following
- Injury 2004 L5S1; 2nd metatarsal left foot fracture; left hip fracture
Djhasty is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
KathyWP (06-24-2013)
Old 06-23-2013, 02:35 AM #3
reluctant@thetable reluctant@thetable is offline
Member
 
Join Date: May 2012
Location: Wisconsin
Posts: 144
10 yr Member
reluctant@thetable reluctant@thetable is offline
Member
 
Join Date: May 2012
Location: Wisconsin
Posts: 144
10 yr Member
Default

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.
reluctant@thetable is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
KathyWP (06-24-2013)
Old 06-23-2013, 04:23 AM #4
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Default

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!

Bram
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
Brambledog is offline   Reply With QuoteReply With Quote
Old 06-23-2013, 01:29 PM #5
AZ-Di's Avatar
AZ-Di AZ-Di is offline
Member
 
Join Date: Mar 2013
Location: Arizona
Posts: 453
10 yr Member
AZ-Di AZ-Di is offline
Member
AZ-Di's Avatar
 
Join Date: Mar 2013
Location: Arizona
Posts: 453
10 yr Member
Default

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
AZ-Di is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
KathyWP (06-24-2013)
Old 06-24-2013, 10:17 PM #6
KathyWP's Avatar
KathyWP KathyWP is offline
Junior Member
 
Join Date: Sep 2006
Location: Kentucky
Posts: 59
15 yr Member
KathyWP KathyWP is offline
Junior Member
KathyWP's Avatar
 
Join Date: Sep 2006
Location: Kentucky
Posts: 59
15 yr Member
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.
__________________
KathyWP
KathyWP is offline   Reply With QuoteReply With Quote
Old 06-30-2013, 01:58 PM #7
wolf15 wolf15 is offline
New Member
 
Join Date: Jun 2013
Posts: 1
10 yr Member
wolf15 wolf15 is offline
New Member
 
Join Date: Jun 2013
Posts: 1
10 yr Member
Default

Quote:
Originally Posted by KathyWP View Post
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.
1st post here. Wanted to share my Lyrica experience. I came off Buprenorphine (Subutex), which I took for several years for a pain problem. Had about 15 days of very bad opiate withdrawals, but doable. Also taking between 1 1/2 - 2 15mg Tranxene average / day. Subutex must have masked Benzo tolerance withdrawal, as around day 20 my forearms started to burn badly, on and off in intensity. This went on for about 6 weeks, but improving ever so slightly and slowly. Warm showers, ending with cold water helped and I typically got relieve for a couple of hours.

I made the (in retrospect) mistake to wanting to be normal NOW, rather than waiting it out, since I was clearly getting better, slowly but steadily. Went to see my pain and "withdrawal" specialist. He prescribed Lyrica, 50 mg 3x / day, but said to try to take it only 2x / day. That should have rung a bell about what was about to happen.

The first 2 days on Lyrica were great. Took it 3x / day and burning was instantly gone and actually had very slight euphoric feeling. Great, I said to myself. Side effects were slight dizziness, keeping balance walking and at times difficulty reading. I thought these were initial side effects that would disappear with time. On day 3 I noticed hive like stinging little blisters, maybe 10 total in a small less than 1/2" area on a finger. Didn't relate it to Lyrica. Also, I tried to go down to 2x50 mg / day, but burning forearms started to come back, so I quickly took the 3rd dose. Then I noticed a slight rash on my upper chest. On day 4, subdued forearm burning came back, different from what I had, more like ice burning under the skin. Not very strong, but constant. Annoying, but tolerable.

Also, my mind now was in a constant fog, could function, but just didn't feel right. Was constantly hungry and ate like I hadn't in a long time all day long. Noticed some swelling in my legs that became painful while sitting down for prolonged periods of time.

On day 4, ice burning intensified, more hive blisters, badly fogged brain, edema in legs getting worse. At this time I decide to stop taking Lyrica. In approx. 1/2 day the forearm burning got very bad (worse than what I had when I seeked help) and now I also had it on the elbows and behind the knees. On day 5 I couldn't take it any longer and started to take the pills again. Day 6 and 7, burning got somewhat better, but side effects got worse and the hives were fire red and stinging badly.

I finally googled Lyrica side effects as well as withdrawals. Then I realized what I got myself into and decided to stop immediately no matter what. Had to do it by myself as I could not get a hold of my doctor and I simply didn't want to get deeper into it. I thought that since I only had taken it for 7 days it shouldn't be too bad. Wrong. The next 4 days were hell on earth. Intense continuous burning on forearms, some on legs, behind knees and on armpit, minor itching on scalp and around eyes, which also were very try, hot flashes and cold sweats. Hives disappeared as fast as they came on, which was the only positive. On top I had gained 10 lbs in one week and became hypertensive. Virtually no sleep. Showers no longer provided relief.

Today is day five. Last night I got about 3 hours of sleep. Woke up without burning symptoms, but as soon as I got up, it came back, but less intense. And so it has been so far half way through the day. I hope I am getting better already, but am very suspicious of a new intense onset at any time. My body's temperature control is out of whack, hot and cold at the same time is the only way to describe it. Skin is very sensitive to touch.

I realize that hopefully I am already recovering and that my story is nowhere near some of the very prolonged horror WD experiences other people describe. My point is that in my case it took no time for this drug to show its evil nature. Had I known, I would have never touched it. I am not saying it doesn't help some people and in a way don't want to alarm anybody. Just saying that before getting on Lyrica, know what may happen and how fast. I am aware that many people seem to tolerate it well and may have only minor withdrawals if they needed to get off (I doubt that part however) plus the benefits outweigh the downsides.
wolf15 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Imahotep (07-05-2013), KathyUK (07-04-2013), KathyWP (07-01-2013)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Taking Gabapentin and Lyrica together ? groskilly Peripheral Neuropathy 55 07-06-2013 10:07 PM
Lyrica - Taking ownership of my health JossyB Multiple Sclerosis 13 11-16-2011 06:46 AM
Prescribed: Lyrica. Off work another month. dmplaura Multiple Sclerosis 6 11-15-2011 09:03 PM
Ive been prescribed Lyrica owen Traumatic Brain Injury and Post Concussion Syndrome 35 01-06-2008 07:13 PM
Lyrica doses plus other meds with Lyrica? Sydney Reflex Sympathetic Dystrophy (RSD and CRPS) 2 05-31-2007 10:37 PM


All times are GMT -5. The time now is 10:51 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.