Thinking of weaning off from gabapentin....

Susanne C. · 08-24-2013, 03:38 PM

Quote:

Originally Posted by heb1212

Hi, Susanne... If you monitor your posts, I wonder what your experience with bone and muscle pain has been. I've had body wide neuropathy for two years now, and the muscle pain is crazy bad. At least I think it's muscle pain. It's definitely different than the nerve pain and seems to be the muscles, though it's not a normal muscle pain like from over working or pulling a muscle. It's crazy pain in the major muscle groups. I thought the neuropathy was bad enough, then this kicked in big time a year ago. Has your neuropathy been determined to be length dependent or not? Gosh, so sorry you're a member of this most unfortunate "club". The info from here and kind responses of others helps keep me sane.
Cathy

Hi Cathy!
I have hereditary neuropathy, CMT, so have both large and small fiber neuropathy. It is length dependent, but different from the others in that it keeps progressing. It involves most of my arms and legs and also caused lifelong constipation. It is a neuromuscular disorder, as the nerves die back in a length dependent pattern the muscles follow, so there is muscle pain from all the extra stress. It feels like bone pain, but the mind plays tricks with nerve pain. I would think this pattern could appear in other neuropathies since nerve function does affect the muscles if enough time goes by, so you may have weakened muscles which puts stress on all the others.
Please let me know if you have any questions.

Beachbum65 · 08-25-2013, 04:41 AM

Quote:

Originally Posted by heb1212

Hi, Susanne... If you monitor your posts, I wonder what your experience with bone and muscle pain has been. I've had body wide neuropathy for two years now, and the muscle pain is crazy bad. At least I think it's muscle pain. It's definitely different than the nerve pain and seems to be the muscles, though it's not a normal muscle pain like from over working or pulling a muscle. It's crazy pain in the major muscle groups. I thought the neuropathy was bad enough, then this kicked in big time a year ago. Has your neuropathy been determined to be length dependent or not? Gosh, so sorry you're a member of this most unfortunate "club". The info from here and kind responses of others helps keep me sane.
Cathy

I understand what you mean about the muscle pain when I just quit taking Gabapentin 300 x 4 times a day. I would not suggest that anybody try this at all but I can only tell you I took it for a few years and it started to make my urine smell very sweet and my pain was so bad I just quit cold turkey and I felt better in about a week. I don't think it helped me much at that high dose like it does some people because of it did not help my pain. But after a month or so I started taking 1 300 mg a day and maybe it did help with the spasms and I wonder now if I messed up by starting it again because my urine smells sweet again even after 1 a day for a few weeks. I am not a diabetic, but I have concerns what long term use can have on the liver and kidneys. For me it has been very hard to figure out . Some days the pain gets me and somedays I can can beat the pain. When the flare ups hit its bad but I'm still here thanks to God! You hang in there it can and will get better! Peace!

malawigirl08 · 08-25-2013, 05:18 PM

After talking to a close friend and moaning that I couldn't cope with the brain fog, he suggested I ask the doc to change me from 2400mg Gabapentin to Lyrica. I went to a locum who was very young and she agreed to this instantly, she told me to decrease by 300mg per NIGHT, I was in excruciating pain by day three and called my usual GP who had returned from holiday and said he wasn't surprised as it should have been 300 mg per week. I then slowed the weaning down and made the switch to Lyrica and I have never looked back. No more brain fog, more energy and marginally better at controlling the pain. Lyrica has been life changing for me.

fryer · 08-27-2013, 11:02 AM

Quote:

Originally Posted by Susanne C.

Mrs. D.,
If it seems to help us, if we have more burning and electrical buzzes and zaps when we miss a dose or try to cut back, is there still value in getting off of it? Is it possible that what we take for signs that the medicine is helping are actually withdrawl symptoms?
Would it be possible to take a poll on here to see how many people feel the Gabapentin actually works? Between it and Lyrica the vast majority of people on this forum are on one or the other.
I certainly do not want more pain, but like Mary I do not want to take anything I may not need.
Thank you!
Susanne

I have been on Gaba for 2 yrs and although I have to take other medications it certainly helps in keeping things bearable, as far as addiction goes I really feel comfort is a more pressing issue rather than addiction.

joecarver · 08-27-2013, 02:56 PM

Quote:

Originally Posted by Idiopathic PN

Susanne,
I tried Lyrica (after gabapentin). My neurologist wanted me to shift from gabapentin to lyrica because at that time, I thought I had still pain with Gabapentin. Taking lyrica, at least for me, was scary because it seems I could not control thinking of extremely negative thoughts. I don't remember if my pain was better, my mind was preoccupied of something else.

As much as possible, i will maintain a good distance from Lyrica.

Mary

Just spent a bad month of withdrawing from Lyrica, as on any drug keep close watch on side effects. I was looking for positive ones ,lost track of the negative ones ,so had to pay the piper for being stupid. Some people just cant tolerate some meds Joe

anneo59 · 08-30-2013, 06:59 AM

Tapered off gabapentin some time ago. Just couldn't function on it at all! Been prescribed Lyrica but concerned re dependence, expense, other issues, so just trying to endure some pain, struggling a bit. Getting a TENS tho, hope that helps. The best to all!

Quote:

Originally Posted by Idiopathic PN

I am on Gabapentin and a whole lot of supplements. My neuropathic pain is definitely worse than when it started almost 2 years ago. But as others might agree, when your condition does not improve, and instead is progressing you either tend to learn to live around it or your level of tolerance for pain has increased. In my case, some days are tolerable (not even good) and some days are worse (not even worse).

After the neuropathy, I developed major lung problem, not to mention the persistent acid reflux, hypothyroidism, and elevation of blood sugar. I still have a long way to go for the treatment of my lungs. Hopefully, the treatment will be successful.

I have been toying with the idea of weaning off from Gabapentin. BUT, my major problem and actually my FEAR is if I very slowly wean from it and just rely on the supplements, my symptoms could be worst. I have been taking it for too long that my system could go into withdrawal. I definitely cannot afford additional physical discomforts at this time. But, on the other hand, I am concerned of taking it for the rest of my life. I don't know which way to go.

Thank you.

Dr. Smith · 08-30-2013, 09:58 AM

Quote:

Originally Posted by joecarver

Just spent a bad month of withdrawing from Lyrica, as on any drug keep close watch on side effects. I was looking for positive ones ,lost track of the negative ones ,so had to pay the piper for being stupid. Some people just cant tolerate some meds Joe

Hi Joe,

Would you mind elucidating on that? I'm not understanding what you meant. Thanks.

Doc

chfite · 09-01-2013, 01:41 PM

I have idiopathic polyneuropathy affecting the left leg, foot, and thigh for the most part. I take Gabapentin 2400 mg a day, 800 mg thrice daily.

I tried reducing the dosage just to see if less would work for me. After a week, I was so miserable that I decided that the higher dose was beneficial. I went back to the 2400 mg daily, and I feel much better.

Ordinarily, Gabapentin manages the pain.

I don't see that taking a drug or medication, however you want to call it, that provides a distinct benefit is drug dependence in the pejorative sense.

Type 1 diabetics take insulin, rely upon the drug, and are not seen as drug dependent.

I think that we should not be so hard on ourselves. I hate the disability that the polyneuropathy imposes on me, but I decided to press on as much as I can.

Chris

Dr. Smith · 09-02-2013, 12:44 PM

Quote:

Originally Posted by chfite

I don't see that taking a drug or medication, however you want to call it, that provides a distinct benefit is drug dependence in the pejorative sense.

Type 1 diabetics take insulin, rely upon the drug, and are not seen as drug dependent.

Hi Chris,

"Dependent" is not meant/used pejoratively, whereas "addictive" is. The two words do not mean the same thing, and should not be used interchangably, though they often are by those who don't know/understand the difference.

Briefly:

Dependence is what it is—the body adapts to the presence of a medication—becoming dependent on it—which abrupt cessation or reduction of results in physical withdrawal.

Addiction is the compulsive use and craving of a substance despite harmful consequences.

Insulin is, IMO, a special case. Type 1 Diabetes was formerly known as "insulin-dependent" diabetes. While cessation of medications that produce dependence will result in physical withdrawal, cessation of insulin for many Type 1 Diabetics may mean death.

Doc

lined_in_silver · 09-02-2013, 06:51 PM

Didn't read all other replies, but as someone who's been taking lyrica on and off for about 9 months, I have had no problems discontinuing and using on an as needed basis. However, the most I've been on is 150mg/day. Anything higher and I can't walk straight and feel drunk.
I can't decide if it is worthwhile. For a long stretch of time I felt better, then the burning came back, so I stopped it ,figuring it wasn't helping. Got worse,so started it again..helped a little, got scared of the side effects, etc etc I am inconsistent and also just don't want to be drugged up. I understand that fear.
I am also on oxycodone, and that is very addictive in comparison. I take a benzo up to 4x a week, at a small dose and that calms everything down. But I can tell when its out of my system because I'm an anxious painful wreck. The stress of anxiety seems to elevate the pain.

I suggest weaning if you're sure you are ready, and keeping some on hand if you find it is too painful .

Best of luck

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