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Old 05-23-2006, 07:41 PM   #1
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Faeriedust HB User
Question Neurontin all of a sudden not working as much?

Hello I'm 26 & I've been diagnosed by bilateral neuropathy in my feet and in my eyes. I never experienced any problems until about 2 years a go when all of a sudden I started having SO much pain in my feet. All I could do was lay on my bed and cry. After going to see different kinds of Dr.'s I finally went to see a Neurologist and it was he who dx me with the neuropathy. I don't have diabetes. The doctor believes it was brought on by vitamin deficiency due to years of suffering from the eating disorder bulimia (that of which I now have 3 years of recovery from..yay).

The Neurologist put me on generic Neurontin. It was like miracle touched my life. As long as I took it, my pain vanished. However if I missed a dose the pain was back in a flash. I've not had any bad side affects from Neurontin. It's always worked so amazingly. I am on 600 MG 3 times a day. However, I've noticed for about a month now that it seems like the Neurontin isn't working 100%. I'm feeling pain. I even think my neuropathy is spreading and getting worse. I feel (quite literally) it has spread to my hands. I've not seen a Neurologist in over a year. However I'm on the net tonight to search for one. I'd like a second opinion anyhow.

Well, the whole reason I'm writing this post is to see if anybody else has had any porblems with their Neuontin working well for a long while & then all of a sudden loosing it's effect?

Is it common for Neuropathy to spread?

I'm so scared that the Neurontin will stop working completely. I don't want to be in the pain I was before I found help. I found this board while trying to find a Neurologist & more information on what kind of help is out there for those of us who suffer with neuropathy.

 
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Old 05-28-2006, 06:15 AM   #2
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Captain Colon HB User
Re: Neurontin all of a sudden not working as much?

I don't take Neurontin (I just stopped taking my Lyrica because I didn't feel like paying $300/month for the prescription and it hasn't seemed to affect my pain at all, it's mostly gone now) but as far as I know it's the norm to require dosage increases every one in a while with these kinds of things...from what I've read, 1800mg/day is actually not that huge a dose !

Last edited by Captain Colon; 05-28-2006 at 06:15 AM.

 
Old 06-09-2006, 07:30 PM   #3
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pattihabs HB User
Re: Neurontin all of a sudden not working as much?

hi farydust. i also am on neuroton. i take 3600 mg a day. bee on it for 6 months. it still works for me. if i miss a dose, io know it because the pain gets alot worse. i have rsd. i am also on many other meds but the neuronton works the best. the only thing about it i don't like is the weight gsin. hope you feel better soon

 
Old 06-16-2006, 09:49 PM   #4
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Re: Neurontin all of a sudden not working as much?

Hi, I've been on neurontin for a year now, take that in combonation with vicodin. The last month or so neurontin hasn't been working, as I am at the 3800mg limit, Dr. has added morphine to the mix. Have been taking all together for over a week now, still no relief. The pain is worse than ever, and can't seem to find any relief. Don't know where we will go from here.

 
Old 06-22-2006, 10:44 PM   #5
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ld3340 HB User
Re: Neurontin all of a sudden not working as much?

Hi, I had the same thing with neurontin. It worked wonderful for the deep legache. But it stopped working. You almost think sometimes that a pill you are taking isn't doing much, until it's not there! My doc raised my dose- doubled it! to 2-600mgs, 3 times a day. Months later I was put on Lyrica, for as others said, price. Also Neurontin is a strong drug and Lyrica is much safer. I was completely miserable, so as of yesterday I am back to Neurontin. Thank goodness. Good luck, and remember to cycle down on neurontin, don't just stop LD

PS, Tigerboo, I am on the same as you. I have a chronic back injury and 3 vicadin ES do nothing! so I stopped using them alltogather. My pain is pretty nasty now, with nothing for breakthrough, I tried Lodine but got nothing. Please post if you have found anything. Thank you again

Last edited by ld3340; 06-22-2006 at 10:50 PM.

 
Old 07-29-2006, 04:41 PM   #6
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Re: Neurontin all of a sudden not working as much?

Hi!
I am a Newbie I guess you would call it, and just starting to look around the posting areas. I have a new thread I started regarding my moms neuropathy, feel free to read. As for Neurontin, my mom started taking that also, but in her case it's the numbness that she wants to help. I keep reading Neurontin for pain, but has anyone gotten relief for numbness with this? THanks, Nancy

Last edited by Nancy1961; 07-29-2006 at 07:32 PM.

 
Old 07-30-2006, 12:41 PM   #7
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Re: Neurontin all of a sudden not working as much?

the only problem with Neurontin and Lyrica is weight gain . I take Keppra and no weight gain . Also Topamax is another good drug .

 
Old 08-02-2006, 11:51 AM   #8
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Re: Neurontin all of a sudden not working as much?

Hi faeriedust, I was diagnosed with Pernicious Anemia last Aug.Up until a week ago(when I gradually lowered my dose from 150mg to 0) I was taking Nortryptiline for the pain.It stopped working,so last Friday my GP put me on 300mgs of Neurontin 3 x a day. Finally,I was without the horrible pain.It lasted four day's.Now it's back, not as bad as before, but it's there. I never could last the full eight hours between taking the pills before I started hurting again. I hate to be a baby and complain again, but just knowing that it's stopped working for you as well as others makes me feel better.Although I hoped it would work longer than four day's.Guess I'll call my Dr. and see if I can increase the dosage.
Does your feet feel like the skin is too tight? When I stand up, it feels like my skin is too tight and it needs to stretch out a little.I know, it sounds strange,but hey, this whole PN thing is strange. boo

Last edited by booemmy; 08-02-2006 at 12:03 PM.

 
Old 08-10-2006, 12:44 PM   #9
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Re: Neurontin all of a sudden not working as much?

I have had the same problem of the skin on my legs appearing to be to tight. I am on Neurotin 3600mg/day, tramadol 300mg/day and lyrica 200 mg/day. I am fortunate that I have good drug coverage and most of the cost of this meds are covered. Anyway, I have been on these meds for about 1 1/2 years and have steadly increased my doses upward. I don't know what the next step will be. I am seeing a muscular neurologist and the U of Minnesota. I am not one to accept neuropathy as a diagnosis. It is a symptom of a disease which needs to be found and addressed. There are many causes. one being MGUS or Monoclonal Gammopathy of Undetermined Significance which then needs to be addressed by an oncologist. I will now be going to the Mayo clinic since the many test results indicate that what I have is an autonomic neuropathy of which there are over a hundred causes. Please EVERYONE, don't accept the diagnosis of neuropathy unless you push to find the cause. To date I have had everything from MRIs to bone marrow and intestional biopsies and a laundry list of blood tests to the tune of $185,000(insurance money) all to rule out a hundred diseases such of Multiple myloma, amyloidosis (both fatal and cause neuropathy) I will keep everyone informed as to my final results. PS Autonomic neuropathy( skin, eyes lungs, heart, thing that you can not control unlike walking and moving)can have over 150 possible diseases some fatal and other treatable to get rid of this pain which we are all dealing with Good luck to all and remember push for a cause of the pain.

 
Old 08-14-2006, 12:49 AM   #10
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Re: Neurontin all of a sudden not working as much?

hunter1042,I know the cause of my Neuropathy,it's Pernicious Anemia.My body does'nt make the Intrinsic Factor to absorb B12.It is a good thing to know why you have it,but sometimes it does'nt matter,all you want is for the pain to go away so you can sleep,and live a semi normal life again.boo

 
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