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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Prescribed Lyrica, anyone taking it have advice? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/190424-prescribed-lyrica-taking-advice.html)

KathyWP 06-22-2013 09:44 PM

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.

Djhasty 06-23-2013 12:43 AM

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.

reluctant@thetable 06-23-2013 02:35 AM

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. :(

Brambledog 06-23-2013 04:23 AM

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 :grouphug:

AZ-Di 06-23-2013 01:29 PM

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

KathyWP 06-24-2013 10:17 PM

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. :)

Dubious 06-25-2013 12:35 AM

Quote:

Originally Posted by KathyWP (Post 994981)
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...

KathyUK 06-25-2013 04:30 AM

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!

AintSoBad 06-26-2013 06:43 PM

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

asb

FeatherMe2 06-26-2013 08:47 PM

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!

Imahotep 06-26-2013 08:49 PM

Gabapentin (neurontin) works well for me. There were initial side effects but they went away.

Lyrica actually seemed to be working even better but I got confused and the doc doesn't want me in a million miles of it.

KathyUK 06-27-2013 04:28 AM

Quote:

Originally Posted by FeatherMe2 (Post 995436)
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!

Oh I forgot the biggest side effect of Lyrica for me was massive weight gain! I gained a dress size in under a month, and that was on a diet lol!

KathyWP 06-27-2013 10:22 AM

It seems to be helping....
 
but doc nor pharmacist didn't mention weight gain. Will def have to watch that. I am diabetic on Metformin. I take so many pills it worries me about my liver. But I am told what I take is safe.

Thanks for the heads up. I wish all of us would wake up not just pain free but RSD free. That would be great. But wishing or hoping doesn't change a thing. So I will keep being positive and push thru this condition and fight for all I am.

fbodgrl 06-28-2013 11:30 PM

I was on it a few years back prior to my surgeries and RSD. I had horrible weight gain on it. I begged to get off of it for that reason alone.

wolf15 06-30-2013 01:58 PM

Quote:

Originally Posted by KathyWP (Post 994505)
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.

finz 07-01-2013 12:27 AM

Quote:

Originally Posted by KathyWP (Post 995549)
but doc nor pharmacist didn't mention weight gain. Will def have to watch that. I am diabetic on Metformin. I take so many pills it worries me about my liver. But I am told what I take is safe.

Thanks for the heads up. I wish all of us would wake up not just pain free but RSD free. That would be great. But wishing or hoping doesn't change a thing. So I will keep being positive and push thru this condition and fight for all I am.


From my post in the other current Neurontin thread.....

"Since I started Neurontin, I gained weight (I was already a big girl, but got bigger) and developed type 2 diabetes. As I just confessed, I am a big girl, definitely pretty sedentary for years with pain issues, and I do have a family history of type 2 diabetes, but the family members were all in their 70's when they developed diabetes.....I thought I had 30 years before it got" me. No such luck. Neurontin is known to cause increased blood sugars. Since being dx'd, I've done my own little science experiments too when I tried getting off Neurontin to try Lyrica. Bloodsugars were better without either drug, both Neurontin and Lyrica increased my bs's."

KathyWP 07-01-2013 01:05 PM

You know my blood sugar
 
levels have been wonky since I started Lyrica. They bottom out sometimes and really high for what I thought was an unknown reason, but now I have an idea on the resaon. I have my diabetes under control with a pill and diet and exercise. I really don't need a problem with blood sugars. Plus, on the weight issue I find I want to snack more, and after reading your posts about that I am heading it off. I do appreciate all of your replies. This forum helps keep me healthy. I actually pay people for what you guys do here. THANK YOU, THANK YOU, THANK YOU!


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