I have thoracic outlet syndrome (compression of nerves to arms and hands), permanent nerve damage, and RSD/CRPS type II, with central sensitization, all of which leads to a high level of neuropathic pain. I was on Neurontin a couple of years ago and it helped quite a bit with the burning and shooting, electric-type pain I experience, but I developed rare kidney side-effects and had to discontue use.

So I was very interested in the development of Lyrica, (Pregalbin), the "newer generation" of gaba meds, with supposedly a lower side effect profile due in part to a much lower dosage schedule. I was eager to try it, and happy when my neurologist RX'd Lyrica for me in July.

It has helped a GREAT deal with the burning, shooting and stabbing pains, which I had expected and hoped for. So far, at the lower dose, 200 mg day Lyrica vs 3000 mg day Neurontin, no kidney/bladder issues have appeared. My neurologist wants me to go up another 100 mg day, but I am hesitant, in part because I am afraid those issues might reappear at a higher dose, but also because of the other major side effect I had hoped would be resolved, and wasn't, the weight gain problem.

Since July I have gained 15 lbs and gone up 2 waist sizes, similar to my weight issues when I started on Neurontin. This may not sound like much to some, but I am petite, 5"2, and normally gain 3-4 lbs. a year. I am a Misses size 8, but am now forced into size 12's, and at this rate will be in size 14s or higher by year end. And the MOST exasperating thing is I have very little appetite - usually a small slice of Danish with my coffee lasts me until a small supper, or a light evening snack.

It's really a Catch-22. The med DOES benefit me, enough that I can't see going off of it because of the weight gain. But I DO hate the extra weight, and from my experience with Neurontin I know it will only continue to rise the longer I'm on Lyrica.

Hi, Like you I have several problems with my spine and I have permanent S1 nerve damamge, I've tried many meds and at least 6 dif. anti-seizure meds and have had bad effects from them all.
I tried the lyrica when it came out and found it to give me much relief but I had to keep tirating up rather quickly and the more I would tirate the worse the swelling got not to mention being oh so sleepy, the swelling however became so bad I had to stop it.
Not to mention the more weight I gained it caused an increase in pain in other areas.
Hopefully the weight gain you are experiencing will taper off and you'll be able to enjoy the benifits of the pain relief.
Lot of luck,
Linda

Hi Linda,

So far I've resisted adding that extra 100 mg but the cold weather is on its way, that sends my pain through the roof! So it's a wait-and-see game at the moment, but not for much longer. I really hope the weight gain does taper off!

I'm scheduled for an SCS surgery on Nov 3, the trial gave me great relief - if the permanent is as good, I'll be able to get back to doing some exercise. I know the Lyrica slows your metabolism, so I really NEED to walk, I should be able to swim a bit, ride a stationary bike, maybe do a few weight machines. My arms are where the damage is so I'll have to play it by ear, see how much I can do without overdoing if you know what I mean.

But I DON'T want to go up any more pant sizes, size 14 on 5"2 me is NOT cute. And I have nowhere to store them! I was underweight 6 months ago, had been wearing size 6 for the last year and a half. So I have everything from 6 to 12, still in my closet, drawers and spread around my room, cause I can't get the storage boxes down from the closet shelves and dh KEEPS forgetting. I have size 12 winter clothes from 3 years ago (when the Dr put me on Neurontin, same thing happened), most of them are packed away and it's getting chilliieee!! He's home tomorrow, so maybe if I whack him with a wire hanger(a la Mommy Dearest LOL) he'll get them down for me!

I HATE to be on a med like this at this time of year, with the holidays coming up - makes it hard to enjoy stuffing away those scrumptious meals and desserts when it seems like you gain 2 or 3X the norm.

And I used to LAUGH at my brothers' suffering when they could barely touch Thanksgiving Dinner because it was wrestling season and they couldn't afford to gain weight.

beth

Beth,

I sure can relate to your post. I, too, have nerve pain in my cervical spine. It's caused from herniations and the growth of bone spurs. The pain is excruciating to say the least. Earlier this year, my OSS prescribed 150 mg of Lyrica. My OSS is pretty sharp and I trust him completely. I've tried everything to rid myself of this awful pain. After the first week, the nerve pain was completely gone. I was thrilled beyond being thrilled.

When I first started taking Lyrica, I don't recall reading anything about individuals with heart conditions should not take Lyrica. I do recall reading about the weight gain. Since mid-April of this year, I've gained 40+ pounds while being on Lyrica. That alone was not enough to convince me to stop taking the drug. However, I have a heart condition and I should not be taking Lyrica. After speaking with my primary care doctor and my rheumotologist, I have weaned myself off of Lyrica.

Like you, I am a 5'4" tall and ordinarily weigh about 130 lbs. I'm starting to lose the weight. The nerve pain is present, but not nearly as bad as it was pre-Lyrica. I'm keeping my fingers crossed the Lyrica has calmed the nerves and maybe it won't return. I've only been off the Lyrica for about a month so only time will tell.

Lyrica was truly a Godsend for me, but the weight gain and heart condition prevent me for continuing its use.

I tried Lyrica for the burning pain that I get in my arm and I could not take it long enough to even see if it would work. My feet and ankles kept swelling up so I had to stop it. I tried neurontin and really liked it but I was also worried about weight gain as I am already overweight but I also had the brain fog with it and it seemed to get worse the more I took. Tried Topamax and no relief so now I am taking Gabitril. I am seeing some good results so far. I still have twinges of sharp pain or burning but it is reduced. I am starting another dose in the morning on the weekend. I like to wait till the weekend in case I can't drive while on it. So I hope that you find something that will work for you...Sue

Hi Beth,
I too, have alot of problems with my spine and have had the burning and shooting pain in my shoulders. My doc put me on Neurontin about 4 years ago and I have taken it ever since. Yep, I gained weight also, but the relief from the pain was worth it. A couple of months ago, doc asked me if I wanted to try Lyrica. I hadn't heard of it and told him I wasn't sure. He went ahead and wrote me a prescription for it, just in case I wanted to try it. I went home and got on line and looked it up. I saw where you shouldn't take it if you have a heart condition, so I decided not to take it. When I went back to doc, he asked me if I tried it and I told him no. I told him that I shouldn't take it because of my heart condition. He apologized because he had forgotten about that. I told him that the Neurontin still works great, even though I have to take 3400 mgs. a day. I just hope it isn't affecting other parts of my body.
I wish you luck and hope you get some pain relief.
Take Care,
Linda

I also have similar problems. At first I was on Neurontin 1200mg, 3 times a day. Then they started me on Amitriptyline, so I could go down the Neurontin to 1200mg twice a day. The last time I saw my Neurologist, he was so concerned about the weakness of my limbs so he wanted to decrease the Neurontin to 1200mg/day.

But, since he knew my pain could be disabling (he encouraged me to stay in grad school), he started me on Cymbalta, which is approved for ttreatment of Diabetic Peripheral Neuropathic pain (so we speculate that it will also treat my neuropathic pain). It's still too early to know whether Cymbalta is effective. I've only been on it less than a month, and started in very low dose, for fear of side effects.

Besides neurontin and cymbalta, I'm also on Amitryptilin, Depakote, Propranolol, Amantadine, and almost all of them cause me to gain weight. I had to buy an entire sets of cloths. There is only one pants that could still barely fit me, and even the top shirts don't fit me anymore. It's very alarming because weight gain put me in to great risks of other diseases.

We don't really know much about how these drugs work, but it works for me so far. I get my "life" back, with bunch of limitations, of course. But only very few people knew that I have serious neurological conditions. I look healthy to general audience.

I just saw this thread and want to warn you to continue to have your
doctor do liver tests for you.

Cymbalta has a warning letter sent to physicians regarding liver toxicity, and
mixed with Depakote. Just to be safe!
http://www.medscape.com/viewarticle/514768

thanks Mrs. D, yeah I had tried to remind him. But he said i'm fine since I'm taking levocarnitine. For the ammonia, sure.. - even this I'm not 100% sure, to tell you the truth. And as for the liver, I guess it's a matter of time anyway.. with these much medications? When I'm not that young anymore then probably they will consider more aggresive interventions and hopefully they work so my not so OK liver will have a break?

Although my insurance company, Blue Cross/Blue Shield refused to pay for the Lyrica I received a 30 day sample from my Neurosurgeon. Before I began the Lyrica, I was taking 300 mg. of Neurontin 4 x a day.

When I started the Lyrica, I was so drowsy and clumsy. In fact, I fell and messed up my right foot and today I cannot wear a normal shoe. I have to wear houseshoes. Then about a week later, I fell in the bathroom and put a big gash in the back of my head. Needless to say, it was going to cost me $186 a mth and I said no thanks.

I went this past Friday for a cervical and lumbar ESI which hasn't done a darn bit of good and Neurosurgeon mentioned Spinal Cord Stimulator. NS did allow me to try Avinza as my husband had taken it before his 360 lumbar fusion. It did nothing for the nerve pain. So, tomorrow I pick up Rxs' for Lidocaine patches and Tramadol as we leave Sunday for a 7 day cruise to the Virgin Islands.

However, I did receive a phone call from NS's office verifying my address to send info on SCS. O Gawd, I dread having to go to the pyscho office (required by ins co.) having a trial stimulator implanted to see if is would help.

I have Arachnoiditis and 'clumping of the nerve roots at L3-L4' which NS says is inoperable. I've already had Cervical Fusion At C5-C6 on 8/05, Cervical Fusion at C6-C7 with plating over C5-C7 & 6 screws on 11/29/05. On 1/18/06 I had a Lumbar Fusion at L4-L5 (was supposed to be L4-S1, but was autofused at L5-S1).

I'm just not comfortable having the SCS implanted Yet.

Hugs To Ya!
Claudia