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Lyrica for nerve pain - good and bad
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!! :eek: 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! :p 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. :mad: 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. :o 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
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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 |
neurontin
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. :) Quote:
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Dear AG...
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?
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Lyrica
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:) |
Claudia,
Many meds do take 2-4 weeks for your body to become used to, then the drowsy sx tend to be less noticible. I've been on Lyrica since late June and can't say that it does or doesn't make me drowsy, as I am on several meds that have a sedating effect in addition to overall fatigue from full-body RSD. Each of us reacts differently to meds, so I don't know if you would still have unacceptable drowsiness after a longer trial period, but if you can possibly do so, a trial of at least 3 weeks would allow your body to adjust to the med and allow you to better evaluate the drug's effectiveness as it often takes that long for it to build up to maximal level in the body. I completely understand not wanting to fall again though! The thought terrifies me, what with having osteoporosis and thoracic outlet syndrome as well as RSD. I have plenty of pain already,don't need more or broken bones, and due to the RSD really need to avoid surgery as it can and has made my condition much worse. Yet Lyrica (and Neurontin previously) helps reduce the burning, shooting nerve pain better than any other med I've tried - and that's quite a few. I tried increasing my dose to 150 mg 2x day at my Dr's suggestion though and soon started seeing the same bladder/urinary sx I experienced w/Neurontin(w/ Neurontin I eventually developed blood in the urine, although it took several weeks and tests to determine this med was the reason). I have gone back down to 100 mg 2x day and the problems vanished, I'll stay at this dose until I see the Dr and find out what he wants me to do. I am definitely concerned that over time perhaps the same effects will occur at the lower dosage, but I don't want to give up this bit of relief if it isn't necessary. So my Catch-22 continues :confused: All any of us can do - ask the Dr, ask the pharmacist, research, weigh the benefits vs. the risks.....then make a decision we can live with and pray it's the right one, while we wait for something better to come along. I am scheduled to have a SCS surgery Nov 3rd. The psych visit was not a big ordeal except for the written tests. If your arms or wrists bother you at all, try to break this up into 2 days or at least with a lunch break. There were hundreds of questions to be answered by filling in the circle with a #2 pencil - took me hours as it is hard to grasp and press down with a pencil for long. My hand was all red, swollen and very shaky when I finally finished, never again! But the SCS trial was amazing, pain was MUCH lower, slept like a baby 3 nights straight and felt almost myself, had lots of energy, could do so much more! I pray the surgery is a success, as the leads moved the last day, Dr will attempt to place them differently so there is less chance of this happening after implant. PM me if you have any questions, will be glad to answer if I can. Advanced Bionics is the SCS unit I will get, very impressed with the unit and the company rep. beth |
Scs
Beth
My neurosurgeon only gave me 40 Tramadols and 10 Liboderm patches. I took a Tramadol when I went to bed last night. Helped me sleep, but still woke up with nerve pain in my left leg. Will be putting on a patch in a few minutes. I guess my NS is determined for me to try the SCS as I received a packet in the mail today with info and a CD. The information is for a ANS SCS which has a rechargeable battery and should last about 9 years. I'm not even going to luck at the paperwork until we get back from our cruise. Have to drive to Little Rock airport (85 miles) tomorrow afternoon to pick up hubby's mom as she is going to house and furkid sit while we are gone on our cruise. Will check back on 11/8 to see how you are doing with your SCS. Hugs To Ya! Claudia:) |
they could be real generous - if you give them a chance
actually this is an OT and might sound stupid, but just a note about insurance matters. since i know some people who never thought of it. For some years I had no insurance. And since I didn't have any source of income I was qualified for Free Care, and since it's a big hospital, my hospital covered everything, except any fancy drugs - but if you know my medical expenses, you would understand why i was very satisfied with the ones they do cover. I didn't have to pay a penny for all the expensive procedures. So as my friend put it, if you're sick, Massachusetts is the best place for you. ;)
i'm digressing. When I was without insurance, I always told my doctors (every single one of them) that i was without insurance right in the first visit. Actually one of them was such a jerk, threated me that all the drugs he's going to prescirbe were very expensive. he must just had a bad day, because by the second visit, he was kind and more sensitive to talk about cost, and by the third visits on, he became the sweetest guy I've ever met. He even told me to call the office whenever I finish the samples he gave, and he told the nurse to give me all the samples I needed. Everybody in his office was so glad to help, except one. But if you consider the world today, you must wonder why only one who was not happy with it. And with all the rest of the doctors, every single time I always surprised with how they reacted. If the drugs are not covered with Free Care and the office had the samples, they gave me as much sample as they could - although they're not suppose to do that. So my point is, don't underestimate your doctor's potential for generosity. :) p.s. let us know how it goes. I just had a super painful night.. almost go to ER but after 2 hrs in agony, finally the drugs kicked in. haven't had so much pain for a while - well with all the drugs.. i shouldn't be! |
blue about weight
I had 6 reoccurrances of encephalitis which did major damage to the "pain center" of my brain. Without narcotics life is unbearable. However with the implantation of an intrathecal pump with Dilaudid, I finally had a life. But until Lyrica, my neuropathic pain was still a major problem. But it cleared up excruciating dystonia, and even though I still have a lot of pain, I am able to lead a nearly normal life which is new to me in the past 27 years. I'm driving, doing shopping and enjoying my family. So as I write this, I am realizing that the pettiness of how I look isn't so much to lose.
I had been a size 20 from steroid treatments, and now I'm creeping back up, losing my figure and going up from a size 8 to a 12 in just a couple of months. I know what it's like when it is hard to move around because of excess weight. I never wanted that again. But here I go again. Do any others of you struggle with some of the same feelings? My family says if it was them, they'd go with the extra weight. Me too. But then the vanity bug gets me again. Can anyone relate?:confused: Joanne: |
weight
quiet definitely.. A friend of mine yesterday even told me that i gain so much weight since he met me the first time. It's been so frustrating because I only have 2 pants that still fit, and my shirts too.. I have to get a set of new cloths for the winter.. because almost none fit me anymore. My father keep talking about how I could loose some weight. I really want to.. but it's so hard because reason #1, reason #2, reason #3,...bla..bla..bla.. :o
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Oh My I jsut saw this thread and i have to say I agree completley. I also was on Lyrica along with cymbalta and nortritlyne and methadone. along with getting a number of trigger point injections with small doses of steroids in each one and Epidural steroid injections. and i have gained alot of weight. I was a size 6-8 and now size 18-20 in less than a year. I can not believe it. and it causes alot more pain because of the weight on my joints. and my spine as well. I am off now and not taking anymore injections so hopefully the weight will come off. probably not as fast but hopefully with time it will go away.
thanks for sharing your stories,we all learn aloot from each others experiences. sharon |
Can you enlighten?
Quote:
Does this mean I need to get of Neurontin generic version? I was seeking info and was told there are several blood test for the liver. Is one more vital than the other? I want to get off this med because of the side effects I keep reading about. It has helped my deal with the pain of MP and my stenosis in the back but I do not want to ruin my liver. It also appears to effect your memory or more. If you can offer any insight or refernce material I would appreciated it. Thanks |
Dear Lookingup...
Gabapentin does not affect the liver. It is not metabolized.
What other drugs are you taking? Sometimes a simple viral thing can elevate liver enzymes. This usually resolves with time. Are you taking alot of Tylenol ? That will do it too. Was that 60 for the ALT? here is an explanation for some of the tests: http://en.wikipedia.org/wiki/Liver_function_tests |
Spinal cord stimulator
Hi Claudia:
I just wanted to give you thumbs up for the stimulator. I have the intrathecal pump but know of a lot of people who have had great success with the stimulator. I don't know where I would be without my pump. I am on a tiny fraction of the amount of meds I was on before getting it inserted and believe it is a gift from God. I was bed and wheelchair bound and basically had no life. As far as the weightgain issue with Lyrica, I found out I have heart failure - not from the Lyrica, but because my mitral valve repair caused it. I gained 40pounds in four weeks - not from the Lyrica, but from problems in my valve. My cardiologist who is very good didn't even consider the Lyrica as a cause. So while I may have gained some weight from Lyrica, it isn't 40 pounds that quickly. I learned to control my diet when narcotics caused me to back up so badly it was enemas every few days. I look at every carbohydrate as glue, and weight is not a problem. I think I will do the same with Lyrica and see if I can't control the issue a bit. Since I began addressing the heart failure, my energy has returned, my figure is returning and I feel like the Lyrica is giving me the pain relief I originally had at 300 mg. So maybe the problem with your weight isn't the Lyrica after all but some other medical problem. Just something to think about. Just from experience, it's worth looking into. Joanne;) |
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Thanks for you info. I will look up the site ou listes above. |
Update on Spinal Cord Stimulator
Claudia,
I had the SCS surgery on Nov 3rd, and everything went smoothly. I was very sore for the first 3-4 days, my upper back where they inserted the leads and especially my rear end, which is where the battery was placed (it's very small, 2" around and 1/2" wide or less< they make a "pocket" to place it in in the upper part of the buttock, where a rear pants pocket would be). I'm over most of the post-op pain now, and the SCS is working as it should, and I have to say it is really helping ! :) My arms have always been the worst source of my pain, although my neck, upper chest and back and now my legs all contribute as well. But I notice very little arm/hand pain now,due to the stimulation, which I have gotten used to pretty quickly. Because I have less pain, I sleep better, wake more refreshed. And I find myself going hours past the time for my pain meds, where before the SCS at least 2 hours before time I would start watching the clock,waiting until I could finally take my pain med again because I hurt so bad. I still have 5 weeks of restricted activity, no lifting, bending, twisting, reaching above my head - and I haven't done a bit of Christmas shopping! :eek: I've told dh he WILL be coming with me for some heavy duty shopping trips in the coming weeks - my legs will only do about an hour at a time. I'm thinking besides my girls that we may do a lot of gift certificates this year;) Anyway, it takes 6 weeks for the leads to scar in, that's why the restrictions. So I am trying hard to be extra good. I would say though from all the feedback I've heard from others and from my Dr, I would NOT go with a Medtronic - the unit I have is by Advanced Bionics, it's the only one my Dr says he uses for the upper body because it gives more precision over the area to be covered. It's also got the longest battery life I think, it has a warranty for 5 years but my Dr says most patients of his are getting 9-11 and I am using such low power I could get as much as 15. That sounds MUCH better than the 3-5 that seemed to be the norm in the past! Lots to think about, I do know someone who has had both the ANS and the Advanced Bionic and has done a LOT of research into SCSs', if you would like I could probably put you in contact with her, she could answer any questions better than I. I would NOT let your Dr railroad you into an SCS, and particularly a MedTronic one, if you don't feel sure it's what you want or need at this time. But it does seem to be really working for me, and I am thankful for the relief from pain!!! Best wishes, beth :) |
Beth
Glad to hear you are doing good with the SCS. I wonder tho how in the world you go without bending???
My husband is usually out of town from Sun afternoon - Thurs. night and I have a little shih-tzu (dog). I have to change her water bowl and feed her once a day. Plus how do you get your shoes on without bending??? My pain seems to be much better since my NS rx'd liboderm patches and 40Tramadol before we went on our cruise. Only problem with the patches is you wear them 12 hrs on and the 12 hrs off of them and not supposed to wear them to bed. Golly Gee....I can't got 12 hrs without taking a nap. I've only got 2 of them left and about 10 Tramadol pills left. I think I can 'make it' for a couple of months without the SCS if my NS will renew the patch and the Tramadol; but not sure he will, as he is 'set' on the SCS. I have the CD for the SCS my NS mailed me, but it's gotten lost in my office. I think the brand name is ANS. He did tell me that is was rechargeable and would last around 9 yrs. My main problem is nerve pain running up and down the outside of my left leg/knee (clumping of nerve roots at L4-L5) and a herniated disk at C7-T1. I believe the ESI on 10/20/06 really helped with my arm and hand pain. But the ESI at L4-L5 on same date didn't do a darn thing for the nerve pain. Since coming home from our 7 day cruise and spending a week washing, drying/folding or hanging clothes my pain is now in my back (below the shoulder blades and right at my incision from my L4-L5 fusion 1/18/06. It's not nerve pain; it's just down right hurts LOL! Yes, would really like for the reference lady to get in contact with me. I've also decided; even tho, I know my NS will not like it, I'm going to ask for referrals of his patients. My insurance company will not pay for it without me going to see a physiologist (sp?), so figure I can delay it until after the year if NS will refill especially my Tramadol. Email is claudia029 at centurytel.net Keep in Touch K? Hugs To Ya! Claudia:) |
Pumps, patches, pain meds
Well, I just lost a good post of sone length and I hate that. I'll try again.
Beth I hadn't heard any bad press on the Medtronic Stimulator. Maybe it is the Intrathecal pumps in which they excell. That and surgical navigation equipment. My husband works for Medtronic so I'm a bit biased. I have an intrathecal pump with a bolus which allows me to give myself a boost every four hours on a bad day. I love having little to no cognitive side effects. I went from bedbound to life with the constant infusion of a tiny amount of narcotic in my spine a fraction of what I was on. The only part left out was controlling the neuropathic pain which Lyrica has done a nice job on. I had to weigh the side effects, weight gain, edema etc, but wrestling with my grandson, having incredable energy, and just plain being relieved of the gnawing nerve pain vs. wearing a size 8, the choice was fairly easy. I considered a SCS as well as the IIP but I guess hearing from you, it may help the back pain, but not the peripheral nerve pain in arms and legs. Do you take Lyrica as well or no longer need it? I have heart problems and if they pull the Lyrica due to my heart, I'm wondering if the stimulator may work. Claudia, I've used the Lidoderm patches for many years both during the day and at night. I prefer during the day as I am aware of the pain relief even though nighttime gives me a better nights sleep. We have to make choices with these things don't we, but there should be no problem in wearing them at night. Make certain you wash your back down with alcohol before attaching the patches and they have less problems if you are a back sleeper, or are very active during the day. Also, could you explain what Tramadol is? Also, don't worry about the psych appointment. It is a requirement in certain cases with insurance companies. It was for me before my intrathecal pump. God bless all. Joanne;) |
Adding Amithrypline
Hi all, I also relate to your pain problems, I had an accident and broke my sacrum bone resulting in electric pain in both my legs. Itīs been a year and a half since the accident and still feel pain, needles and constant electric sensation on my legs. I have been using Lyrica at a 600 mg dose, twice daily (300 mg each dose) with almost no weight gain. One of my doctors recommended that I add 25mg on amitryptiline daily. I wonder if any of you have experience with this drug which is actually an antidepresant.
Regards. |
I agree too I am on Lyrica just went up to 75mg 3x daily, it does help, I feel a little "happy" but a good happy and I am also on Amitriptylene 10mg 2x nightly to help me sleep, but it does have weight gain possiable with it too so I was wondering the same thing, maybe the both together are hurting us that have gained weight (30lbs) for me ? sigh sigh sigh
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