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-   -   Thinking of weaning off from gabapentin.... (https://www.neurotalk.org/peripheral-neuropathy/191130-thinking-weaning-gabapentin.html)

Idiopathic PN 07-08-2013 10:20 PM

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.

Susanne C. 07-09-2013 08:00 AM

Quote:

Originally Posted by Idiopathic PN (Post 998368)
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!

Idiopathic PN 07-09-2013 12:12 PM

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

mrsD 07-09-2013 12:25 PM

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.

Idiopathic PN 07-09-2013 02:29 PM

Quote:

Originally Posted by mrsD (Post 998521)
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

mrsD 07-09-2013 03:56 PM

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.

Susanne C. 07-10-2013 07:25 AM

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

mrsD 07-10-2013 08:01 AM

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.

Idiopathic PN 07-11-2013 05:15 PM

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

Idiopathic PN 07-11-2013 05:25 PM

Quote:

Originally Posted by Susanne C. (Post 998725)
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

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


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