Thinking of weaning off from gabapentin....
 

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.

I believe the weaning off period is quite long, like a reduction of 300mg. per week? If you were to start by reducing the middle of the day or morning dose, keeping the evening dose until last so as not to disturb your sleep you could stop at the first sign of returning pain.
I have wondered how much it really helps, I have so many bone and muscle pains as this progresses, but I do notice more burning and zapping if I miss a dose so it must be doing something.
Good luck! More knowledgeable people will respond, I am sure!

Susanne,

I hope you are doing fine. I am holding up until I can post here (hoping very soon) of a thread titled "Success Story - my version". Well, no harm is wishing.:rolleyes:

I know gabapentin is doing something to my zapping and prickly skin. But, it seems I'm becoming dependent on it. I know when I missed a dosages, my symptoms are more pronounced. But the thought of taking it for the rest of my life scares me. My brain fog, thank God, it's not getting worse but it is very noticeable. My husband no longer rely on me on remembering things. I put things aside, and I keep it so well that I could not find it myself!!

I want to wean off but I am scared of the symptoms. I'm on 600mg 3x a day. I tried a couple of times slowly reducing one dose a little bit (I have on stock different dosages), but on the 2nd day, my body notices it. Isn't that strange?

Mary

Something to keep in mind....

There have been some scattered posts on the net that claimed that gabapentin raised blood sugar in some people. I never could find confirmation of that. But it is something for you to think about.

Also gabapentin really does stop working for most people eventually. In the end studies have shown that only about 30% of patients really get much help from it basically.

Weaning off a drug you have been using for a long time, often, does have unpleasant consequences. If they do not resolve in a couple of weeks, you can always go back on the drug if you decide you want to.

There might be some truth about gabapentin causing sugar elevation but since I could not find any study that directly or indirectly correlate elevated blood sugar and Gabapentin, I just blame to getting older and the antibiotics and sort of redirecting energies to control the sugar.

Not knowing exactly how "unpleasant" would be the symptoms in weaning is scary. I become a very irritable, totally the opposite of what my usual demeanor when I am in complete pain and add the difficulty breathing. It's a perfect combination for me to become a person you want to run away from. :D

But, you are saying MrsD that when things become difficult, I can always go back to it?

Mary

What you may have to do if you cannot wean off it now, say within 2 wks to a month, is go back on it. Then you will be back to where you are today.

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

It is really difficult to say.

People vary so much, and the mechanism of how gabapentin works is not well understood.
Supposedly it works on the dorsal root areas along the spine.

Could be mini-withdrawals, like the long term Benzo use patients have. The Benzos also seem useful in the short run for some nerve pain. Benzos share some antiseizure effects like gabapentin has.
(Benzos are Valium, Klonopin, Xanax).

It appears that drugs that temper nerve signals all affect some type of receptor actions and that is what causes the "tolerance" and need for slow weaning off.

The "symptoms more pronounced" we feel when we miss a dose could be that we are already drug dependents?

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

Possible, but that usually describes what happens as a therapeutic medication wears off. Dependence is usually characterized by withdrawal symptoms, and felt somewhat later than just the expiration of a dose. Symptoms of withdrawal may vary depending on the medication and individual, but are often characterized/described as "flu-like". In the case of gabapentin...

gabapentin withdrawal symptoms

Doc

That must have been very scary.
It is really hard to know how each of us will react to any given medication. I do not like the way Lyrica is marketed with so little real evidence and such vague information in the ads- lots of qualifiers like may, some, etc.
I can't help but feel that most of the impetus for Lyrica came from the expiration of the patent for Neurontin.
Most of the new people on the forums are looking for such concrete assurances, while those of us with more experience get very little help or information from our doctors, especially our neurologists, and come to accept that and rely on ourselves and each other.

Yes, I seem to recall a discussion here along those lines -- timing strategies of pharmaceutical companies holding new or improved versions of older meds in the pipeline in reserve for when current patents lapse -- though I cannot find the thread in the archives. (It's late, I'm tired, and not hitting on best search terms of late... :o)

Lyrica & Neurontin wouldn't be the only ones.

Doc

It boils down to profit, IMO.

In my experience, doctors with even good reputations, just rely on med reps for the side effects. With their busy schedules, they don't have time to research on such things on their own. They get information about the side effects from patients who report them. Even then, they forget the information and won't mention it to the next patient.

Wow, I did not know that Lyrica came out after they lost their patent for Neurotin. I am not surprised though. Pharm is big business and I don't believe those companies care who they hurt. That is what makes it so scary for people like us.
I also had terrible thoughts when I took Lyrica and I was only on it for 2 weeks.

I recently put my IVIG on hold. I am trying to be sure it really helps before I subject my body to them. I had a doctor warn me about them by giving me the horrible s/e that can happen and that it is big business for people now. The treatments cost 10,000. Of course, the doctor who told me that is not my Rheumo who I love. Who do you trust?!

Gabapentin ruining my life
 

I have been on Gabapentin for only a month (2400mg/day) and I am having a ***** of a time even reducing it the slightest bit. I desperately want off of it! It is such an addictive substance — far exceeding other things like benzos, opiates, etc. Withdrawal seems impossible!

For a couple of years different doctors and other folks have said "Why are you not taking drugs" A couple of months ago my primary doctor gave me a script for the lowest dose of Gabapentin. He told me I could experiment with occasional use. I finally took one for the last 2 nights. Most of the time I can handle the numbness, but when I have break out symptoms I like to have something on hand. just thought I would chime in.

Hi Adamo, Welcome.

Everyone is different. Others here have also had difficulty weaning off gabapentin. If your system has a higher sensitivity, you may have to wean off in smaller steps -- say... 100 mg at a time. I say 100 mg because AFAIK that is the smallest size capsule made. Discuss this with your doctor, and see if s/he'll give you a prescription for 100 mg to make it easier to step down.

Doc

It caught my eye...
 

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.

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!

I changed from Gabapentin to Lyrica
 

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.

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.

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

first gabapentin then Lyrica?
 

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!:)

Hi Joe,

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

Doc

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

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

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

Thank you all for your kind posts/comments.

Just an update on where I am with PN now --- I tried weaning off very very slowly. I started reducing my dosage by 100mg during breakfast for about 3'weeks. Unfortunately, I had to go back to the original dosage. The symptoms became more intense.

My pain has graduated to a new level. Just over 2 months ago, I had some "tolerable days". I had some windows of tolerable moments during the day, but now, it seems that the pain is getting worse. I dont think this new level of pain is a result of weaning...I am sure it is just a co-incidence. I dont think that it is due to any food or activity. I am basically doing the same thing and eating same food.

Mary

Inquiring Minds...
 

Mary, if I may ask, what kind of diet are you on?

Are you also taking vitamins/supplements?

Joe Duffer,

Thank you for your interest.

My diet is essentially healthy. "essentially" because i sometimes eat hamburger or pork, but this is at least 2x a month. Other than that, I eat healthy. That makes me frustrated because I dont abuse myself but my sugar has been erratic. Maybe, as Mrs D said, it could be my age:D.

I take a lot of supplements which I found in this forum.

Im sorry for your pain. :(

This post is scary. My mom asked me why don't I get on pain meds. and my answer was addictive and dependence once I start and this post confirms that. I guess eventually one day I may have to give in to pain meds but that wont be until I have to. Like you said, the thought of taking it the rest of my life when I am only 45 scares me.

This whole thing scares me. Our lives revolve around dealing with our pn and I wonder what my life will be like in even 5 or 10 years, but mostly I try NOT to think about it.

I wish for you pain free days.

Help Please! I am a new member with neuropathy in my feet & very dry soles!
 

Hi All,
My feet get tingling and very peculiar, hard to describe symptoms. It feels like I have another sole to my feet which doesn't seem part of my own feet. The souls of my feet are awfully dry! When I touch my feet they don't have hard skin but when my feet touch each other they feel so rough that I cannot allow my feet to touch each other at all. All this makes having a good nights sleep really difficult. Please, please help! Anyone! Any suggestions?
Really grateful for your thoughts.
Thanks

Welcome to NeuroTalk:

With your doctor's permission, I'd ask you to start with a quality fish oil product. This can help with dry skin. Ask your doctor for dosing, since in your profile you list kidney failure.

Poor intake of essential fatty acids can lead to very dry skin.

I tried it
 

I was given the lowest dose a couple months ago but never used it. Last week I decided to experiment during a flair up. I took it 2 nights in a row and felt a little off. The second morning I took another pill and I was loopy and slightly groggy. I did not feel any benefits so I stopped.

Everyone is different. I had a contractor do some work last week. He has diabetic neuropathy. He said his doctor gave him a little pill that he takes twice a day and bingo, no more symptoms. Turned out it was lyraca. He said, stop looking for a cure just cover up the symptoms. That's why I took tha gabapentin.

I hate to admit it but I think he's basically right. For most of us