Gabapentin -- Bad News Med?

chisue

Not liking this. Was prescribed gabapentin 300 mg for nerve pain brought on by cancer chemo (Velcade). Took 300 mg for two weeks; no pain relief. Doctor doubled to 600 mg. Took that once on Monday. Back to 300 mg Tuesday. Felt even worse Wednesday a.m. and took nothing. Too much pain to sleep Wednesday night. Still miserable at 3 a.m. Thursday. Feedback?

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jim_1 (Zone 9A)

I have meralgia paresthetica, which is a nerve situation in my left thigh. I tried gabapentin and it had zero effect on me. No side effects. It just didn't work. Unfortunately, none of the eight medications ever worked. For MDs tried to alleviate the pain, but it persists. I have had it since August 16, 2005.

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jewels_ks

I took Gabapentin for a week or so when I was having problems with my pirirformis muscle. The Gabapentin worked when I cut it into thirds. I don't remember how many milligrams they started out, but it made me very dizzy.

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socks

No suggestion for you dear Sue, but great sympathy for you in pain. What a miserable night you’ve had. Will you call the doctor today?

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sjerin

Yes, bad news for many! My mother took it for awhile and I credit it with sending her into a deep depression that lifted when she got off of it. (She took it for Restless Legs.) It seems to me doctors are throwing it at many complaints, but I'd think twice before taking it. Why don't the docs give you Oxycodone until the pain subsides? It does have its purpose, when used carefully. I'm so sorry for your misery, Chisue, and wish you happier days ahead.

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Elmer J Fudd

I'm very sorry and hope this problem can be resolved for you.

It's another example of how different people have different experiences, I've been taking this drug for over 15 years. 1200mg all at once at bedtime, to stop restless leg syndrome. It works great for me with no side effects. I need to add that I take the brand version Neurontin exclusively. A few times over the years the pharmacy has done a refill with a generic Gabapentin and each time I was inattentive about what I got and what I took. It doesn't work for me at all. One time it went on for a week, lousy sleep, until I noticed the capsules were different.

Please feel better soon.

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jrb451

Gabapentin made me feel lethargic so I dropped it.

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chisue

Thanks, KT friends. I did get three hours sleep -- after turning it over to you! Emailed my oncologist; nothing back yet. I'm DONE with this. (I know you are supposed to 'taper', but I was taking so little...)

DH takes minimum dose duloxetine plus a 'non-theraputic' dose (1 mg) of Abilify. If he doesn't take it, he has Restless Legs. (Duloxetine has similar dire warnings as gabapentin, but has never bothered him.)

I do have some GOOD News...will post later.

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Judy Good

Husband was on it for migraines. Had to get off it. Memory loss, extreme edema in lower legs and feet. We will never use it again. Memory is back but still has swollen legs, they say it can take up to a year. UGH

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morz8

My mother (92 years) has been prescribed a tiny dose (100 mg) along with .50 mg ropinirole since Sept for restless leg that began after her last vertebrae fracture (osteoporosis). When tucked in at night with a vibrating pad under her legs, she's gone from up 7-8 times during the night to up once or twice, some nights three times. She's sleeping well compared to what she managed the last several years, and better sleep has improved her cognitive function. No side effects from those small doses.

My neighbor, younger than me by 10 years, was taking 1,800 mg gabapentin for Trigeminal neuralgia and was having some side effects at that dose. She had surgery for the nerve pain and no longer needs the med. Before the surgery and without gabapentin, she couldn't function. She would be in bed, speech affected, unable to chew, completely side-lined by pain from daily life.

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loonlakelaborcamp

For the last 2 months I have been on 900mg a day. I had shingles on my right side, and it helped immensely- and also relieved severe left leg pain I've had for 5 years! I can walk without a cane most of the time now!


It did take several days to take effect, and there was some squirrelly facial numbness that subsided in a week. I may be staying on this for a long time if it continues to relieve the leg muscle pain.

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patriceny

It worked sort-of ok with some nerve pain years ago. Sometimes they have to try upping the dosage if a low dose doesn't work and I do remember it took awhile for me to start to have some good results.

There is a newer drug called Lyrica that I tried after the Neurontin didn't do much, and Lyrica was a god-send for me.

I'm so sorry you are battling nerve pain - it really does interfere with a good night's sleep!

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chisue

My oncologist mentioned duloxetine, but I'm going to wait and see what happens now that I am off three different meds. My internist mentioned Lyrica; good to know it has helped you, patriceny.

My doctors don't really know what's caused this pain in my lower ribs and skin. The chemo side effect is supposedly peripheral neurophy. This isn't peripheral, but across my midriff and in my floating ribs. I had ONE DAY two weeks ago where I had ZERO pain. Could not figure out what went 'right'!

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patriciae_gw

Lyrica can have some fierce side effects and is very hard to come off of whether or not it helps you. Approach with caution.

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mdln

May want to discuss dose w/ doc.

(Starting dose 300mg, max daily dose 3600mg)

from Epocrates:

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tami_ohio

I was on it for my fibromyalgia. It did nothing. I took it for several years. I talked to my Dr. and was told how to wean off of it. I think it was 800mg. He had wanted me to take it twice a day. Couldn't function on that much, so only took it at night.


Please, please don't take Lyrica. It can, and does, change your personality! Prayers something can be done that works.

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justlinda

The one drug that really stopped RLS for my husband was pramipexole(Mirapex) which is approved by the Food and Drug Administration for the treatment of moderate to severe RLS.

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patriceny

Tami - I'm so sorry about your experience with Lyrica.

All I can say is that it worked very well for me. I had almost incapacitating nerve pain, and Lyrica totally eliminated it. Neurontin had taken the edge off (situation was improved but still a problem), so then we tried Lyrica - and it actually gave me my life back.

When it was time to get off the drug I did a taper under the advice and watchful eye of a good doctor. Again, I had zero problems.

I do think Lyrica contributed to some weight gain for me. I think it's hard to know because I was also more inactive at that same time. But honestly, the weight gain is the only possible negative side effect I can list, for me personally.

We are all so different and what works for one person may not work for another. One person may have a fabulous and successful experience with the same drug that causes intolerable side effects for someone else.

All I can say is Lyrica worked wonders for me, and very literally allowed me to resume my normal life again.

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tami_ohio

Patriceny, I'm glad you had good results with it, and no bad side effects. It is not my personal experience, but I have seen it in a number of friends who have tried it, in addition to reading information on it.

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chisue

Bad night last night. Dragging this morning. I tried lidocaine patches over the front of my floating ribs below my breasts. Awkward...and not helpful. This afternoon I tried the roll-on lidocaine. That DID help! The pain just wears me out -- it's certainly not excruciating, but always *there*. I find myself just sitting still to avoid having anything brush against my skin. I am getting a lot of reading done...

Really helpful to know others have gotten past this.

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Debby

It vaguely helped my husband for a while after his accident. Not a lot. Just some. He was on a maximum dose. Changed it to Tramacet. Did nothing. Changed to Topriamate (maximum daily dosage), reduced the pain for 1 hour TOTAL per 24 hours. Now he uses CBD oil and pot. Helps tons.

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sjerin

I read this thread awhile ago, so don't know whether you tried cbd oil yet. I should think by now it's fairly easy to get safely (no impurities) get some by now, at least here in CA. My sister's anti-nausea drugs (she's on chemo,) weren't cutting it so she tried cbd under her tongue which has worked much, much better. Maybe you can give it a try, Chisue? I'm so sorry your in all this pain.

P.S. It goes without saying that you should make sure after talk with doc that the oil wouldn't interfere with your other drugs.

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chisue

Looks like I should ask about CBD when I see my 'MM guru' oncologist tomorrow -- that is if we can GET downtown after all the snow we're getting today! I appreciate everyone's concern.

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Elmer J Fudd

Thanks mdln for those excellent links. As mentioned in the FDA and supplements thread in past days, CBD oil is an unregulated, uninspected supplement. There's no way to know what's in a given bottle nor what it does.

Some quotes from the links:

""It really is the Wild West," Bonn-Miller said. "Joe Bob who starts up a CBD company could say whatever the hell he wants on a label and sell it to people."" (This from a professor at UPenn, a premier institution)


"While CBD is generally believed to be safe, scant research has been conducted on its medical and health benefits because cannabis has long been prohibited at the federal level. The only clinically proven remedy is a treatment for two rare forms of childhood epilepsy. All other claims are anecdotal."


"To some, the hype echoes 19th-century snake oil advertisements that promised to cure “all aches and pains!”"


"Existing research also indicates that 500 milligrams of CBD is required for it to be effective, a far higher dose than typically found in most consumer products. Meanwhile, with oversight lax, fake products containing no CBD whatsoever have proliferated, according to industry observers."

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sjerin

My sister has a terminal cancer so this is not a big concern for her. I know Chisue is a good researcher.

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Raye Smith

Here's something that might explain the vast differences in experience with some meds. It called pharmocogenomics, it's a genetic test that looks at your ability to produce the enzymes needed for your body to metabolize specific classes of medicines.

An example would be, your body must produce enzyme X to metabolize the active ingredient in medicine Z. So if your body doesn't produce enzyme X then medicine Z won't work in your body and may stay in tissues and become toxic.

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jim_1 (Zone 9A)

Sue,

Do what you heart (and husband) indicate.

We're here for you.

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norsetex

I was given gabapentin for nerve pain after chemo too. Made me sleepy all the time , never seemed to do much for the nerve pain in my feet so I stopped taking it

Still have it in my toes mostly 18 months later but manageable .


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