[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.

[Susanne C.]

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.

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]

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.

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]

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]

Originally Posted by mrsD

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.

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

Mary

[mrsD]

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.

[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

Originally Posted by Susanne C.

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 C.]

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]

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]

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.