Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 From: " A " <davidevans@...> > > Neurontin. What was the dose? > - 600mg 2/day This probably won't work for RLS/PLMD. All of it has to be taken at bedtime. Neurontin has a very short half life, and anything you take in the daytime will be flushed out of your system by night time. 600 mg isn't a big enough dose if you're a big guy. I'm taking about 1500 mg (~15 mg/kg) and it more or less works. I've found a bit of a tolerance to it, though I do not know if that is typical or not. I intend to ask to go up to 1800 mg, because that definitely works. If I take that about 1 hour before bed time, I sleep like a stone--literally do not move for at least 6 hours. There is probably *no* upper limit on safe dosage of Neurontin. There was one reported overdose of something like 80 grams of it, and it didn't kill them. I know a woman who takes upwards of 5g/day for reflex sympathetic distrophy and related problems. I can't imagine any case of PLMD requiring more than 5g. Basically, find the dosage that works, and increase slowly if needed. The chief concern is cost, of course. Neurontin should not interact with any medication. It is not metabolized by the body at all and is directly excreted via the kidneys. The MTX might put a little extra load, but I haven't noticed any problems at all (I'm on 20 mg/week MTX). However, I would not combine it with alcohol because of the possibility of depressing your CNS system too much. Don't take my report too seriously, but it may help to find a better neurologist who knows how to treat PLMD and related disorders. Klonopin is overkill, but it is definitely cheaper. However, Neurontin may not be enough for psoriasis-related neuropathy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2002 Report Share Posted December 1, 2002 I take 200 every 4 hours. This required extremely slow beginning tho...100 at night to start. Then another 100 in day, slowly up to a 3rd dose of 100. Then eventually adding each 2nd 100 til 200 every 4 hours.Hope that makes sense. It's to avoid the " drunk " and other side effects. After I began, I noticed it helped with nerve pain and a certain type of thinking...like what was required to be on-line. It might help with mood.... It also helped with my Dystonia and tremor. Have not noticed it helping with MCS. I have not followed any lists on Neurontin, so in that way, am no expert. At this point I am so wrecked neurologically, I am not sure what anything is doing. Taking more might be a good idea but I am hesitent to alter any neuro meds til I get evaluated either by UCSF or Mayo...whichever comes first. Katrina P.S. I recall the dose people take or tolerate of Neurontin vary more than any med I have seen > What dose of neurontin are most people taking? I know several years ago some > patients of Dr. Jay Seastrunk were taking very high doses (up to 2700 mg/day > or so) and having positive results from this, but I think I remember reading > that Cheney was discouraging this. What have others found to be the optimum > dose, and what benefits have people had (sleep, cognitive problems, MCS, > etc.)? Is anyone still experimenting with ultra-high doses? I know this has > been discussed before but I wanted a current perspective since I just got a > prescription.> > Peggy > > *********************************> web page: www.angelfire.com/ri/strickenbk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 In a message dated 12/1/2002 4:35:52 AM Eastern Standard Time, Peggomatic@... writes: > What dose of neurontin are most people taking? I know several years ago > some > patients of Dr. Jay Seastrunk were taking very high doses (up to 2700 > mg/day > or so) and having positive results from this, but I think I remember > reading > that Cheney was discouraging this. What have others found to be the > optimum > dose, and what benefits have people had (sleep, cognitive problems, MCS, > etc.)? Is anyone still experimenting with ultra-high doses? I know this > has > been discussed before but I wanted a current perspective since I just got a > > prescription. Peggy, I take 2400mg a day and what it does is calm down my irritable nerves... physically speaking, not emotionally. When I don't take it, my skin gets itchy and irritable, my neuralgia gets worse and my neuropathic pain intensifies. Whatever you do, don't stop taking it abruptly, it could lead to seizures. Shelle in on, Michigan GBS in 99, triggered by food poisoning " He who trades liberty for safety, deserves to have neither. " Ben lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Peggy, I take 4800 mg/day. I'm not sure I could survive w/o it. I was on a lower dose, which was not enough to control my neuropathic pain, but Dr. Cheney was uncomfortable increasing the dose. Then my specialty coag tests came back (not from Hemex), which revealed that I have a genetic defect in the enzyme that is necessary to produce myelin, the protective covering over the nerves. I am homozygous for this defect, meaning I got it from both of my parents, therefore issue of dominant vs recessive trait does not come into play here. It needs to be treated for the rest of my life. My oral surgeon wrote a letter to Dr. Cheney explaining that the reason he was having a difficult time controlling my pain (by trying stuff like Vicodin in varying strengths, flexeril...) was that the pain was neuro in origin. Without hesitation Cheney cranked up the Neurontin to its present dosage. If I take it spaced properly, 98% of the neuro pain is relieved. When I go past 6 hours, my body lets me know. I ramped up slowly, and eat protein with every dose except the bedtime dose, and don't have the woozy, drugged feelings some describe. I take N as well as klonopin and doxepin for sleep, so sleep well (but am like you in that my sleep period is 3 am to 10 am). I awake as exhausted and fatigued as ever, but do not feel drugged. I don't think it has helped my cognitive problems, which are steadily declining, but then perhaps it is slowing the cognitive loss down? Who knows. It has done nothing for my severe MCS, however. Dr. Seastrunk wrote that some patients needed to be on high dose for 2 years or more before it helped these types of problems, and I have not been on the high dose more than one year, so perhaps time will tell. It has cut out use of other pain meds except for Toradol which seems to be the only thing that helps bring my headaches back to a tolerable level once they reach the stage of intolerance. At this stage in my life, I am willing and happy to make the trade between Neurontin and Vicodin/Demerol any day. Donna in NC neurontin > What dose of neurontin are most people taking? I know several years ago some patients of Dr. Jay Seastrunk were taking very high doses (up to 2700 mg/day or so) and having positive results from this, but I think I remember reading that Cheney was discouraging this. What have others found to be the optimum dose, and what benefits have people had (sleep, cognitive problems, MCS, etc.)? Is anyone still experimenting with ultra-high doses? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Has anyone found that Neurontin helped their physical fatigue and muscle weakness? Has anyone found that it helped brain fatigue (I am not thinking about cognitive problems but the fact that the brain gets exhausted from just a short chat with a friend)? Thanks, Lene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 Hi Chris: Just sent Nick a note about Neurontin/Gabapentin and realized I should have hit " reply all " instead of reply. I took Neurontin/Gabapentin for my RSD in 1997. I gained something like 40lbs in the first month or two, which is very common side effect, although I do have a (male) friend who's never gained a pound. It was listed on the printout (the one you get from the pharmacy when you get a prescription for the first time) as being a side effect. I think it even listed " craving greasy foods " as the first or second side effect--lol (seriously though). I eventually took the weight off then went on to gain it back plus another 20-30lbs. I've now lost all but 25lbs. (I'm 5'9 and was pretty thin to start with--I live in Los Angeles--a pretty weight conscious town---but that's another neurotic conversation for another time--LOL). Ok, so here's my advice. I suggest that you ask your doctor and pharmacist about potentially changing your medication. There's a newer (and I'm told an even more effective) medication that's in the same family called Topamax which actually has a side effect of weight loss. I've been taking it now for a few months (a friend of mine says I'm the only one she knows who hasn't lost weight as a result of just taking it--I mean, I'm doing old fashion dieting--that's how I'm losing weight). It was prescribed for me for numbness, tingling (down my leg) and pain. It took the tingling and numbess away. I don't think it's done all that much for my back pain (Neurontin never did either) but it's helped my spasms (no one said it would) immensly. My pharmacist told me that a lot of doctors are prescribing Topamax now instead of Neurontin. So....you might want to ask your doctor what he/she thinks. Let me know. Hope that helps. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2002 Report Share Posted December 11, 2002 Kirsten, I have been on Neurontin for quite some time and yes it helps. I find that if I run out and the doctor hasn't called in my prescription yet I definitely feel the difference. I have no side effects from it at all either. JMHO Robin, Penny, Chance, Heidi, and Hope (Florida) http://www.geocities.com/goldens4life2000/index.html Messenger: goldens4life2000 [ ] Neurontin Ron- So glad you mentioned neurontin in regards to the TMJ. I've been wondering if anyone here has used it succesfully for pain management in here?. I've worked with several patients who have been put on it for pain control and the side effects seem to be less that the narcotic based drugs. Apparently, the neurontin is actually an anti-spasmodic medication- which seems to be right up our alley when we're experiencing pain related to inflammation. Just wondering! Kirsten Please visit our Psoriatic Arthritis Group's informational web page at: http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. Blessings and Peace, Atwood-Stack, Founder Alan , Web & List Editor Jack , Newsletter Editor Pat Bias, List Editor Ron Dotson, List Editor and many others who help moderate (thank you!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2002 Report Share Posted December 11, 2002 I am being successfully treated with neurontin for neuropathy contributing to TMJ, myofacial pain and eye pain/migraine--all on the right side of my face and head. I also experience a disproportionate amount of pain in my feet compared to rest of my body. My neurologist had my feet tested for neuropathy. He suspected it was not the cause of my pain because I was already on the neurontin which is often effective in the treatment of pain in the feet (I.a. diabetics). Sure enough tests revealed no neuropathy in feet so all of pain is attributed to arthritis and I have been referred to orthopedist who's specialty is feet for evaluation for possible surgical intervention. I remember neurontin was discussed extensively by this group sometime during past year. Quite a few of us have been prescribed neurontin at some point, but my memory is that the side effects for some have made its use prohibitive. [ ] Neurontin Ron- So glad you mentioned neurontin in regards to the TMJ. I've been wondering if anyone here has used it succesfully for pain management in here?. I've worked with several patients who have been put on it for pain control and the side effects seem to be less that the narcotic based drugs. Apparently, the neurontin is actually an anti-spasmodic medication- which seems to be right up our alley when we're experiencing pain related to inflammation. Just wondering! Kirsten Please visit our Psoriatic Arthritis Group's informational web page at: http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. Blessings and Peace, Atwood-Stack, Founder Alan , Web & List Editor Jack , Newsletter Editor Pat Bias, List Editor Ron Dotson, List Editor and many others who help moderate (thank you!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2002 Report Share Posted December 12, 2002 Hi - I take Neurontin for pain in my feet - I can't walk for very long - maybe 30 minutes - Dr said it was because I drank a lot when I was in my 20's. It has stopped the pain - I only take one of the three per day because that works but go ahead and get the prescription for 3 per day so if I need them I have them. lj > Ron- > So glad you mentioned neurontin in regards to the TMJ. > I've been wondering if anyone here has used it succesfully for pain > management in here?. > I've worked with several patients who have been put on it for pain > control and the side effects seem to be less that the narcotic based > drugs. > Apparently, the neurontin is actually an anti-spasmodic medication- > which seems to be right up our alley when we're experiencing pain > related to inflammation. > Just wondering! > Kirsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2002 Report Share Posted December 12, 2002 I take one neurontin twice a day. It does help but I still ache all over ....mostly my back and legs though. [ ] Re: Neurontin Hi - I take Neurontin for pain in my feet - I can't walk for very long - maybe 30 minutes - Dr said it was because I drank a lot when I was in my 20's. It has stopped the pain - I only take one of the three per day because that works but go ahead and get the prescription for 3 per day so if I need them I have them. lj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 I don't get it. Did I miss something? The pain in my feet is excruciating and I didn't drink alchohol. Why would your doctor say that your feet hurt because of your drinking. Does he think you have gout, then? [ ] Re: Neurontin > Hi - I take Neurontin for pain in my feet - I can't walk for very > long - maybe 30 minutes - Dr said it was because I drank a lot when I > was in my 20's. It has stopped the pain - I only take one of the > three per day because that works but go ahead and get the > prescription for 3 per day so if I need them I have them. > > lj > > > > Ron- > > So glad you mentioned neurontin in regards to the TMJ. > > I've been wondering if anyone here has used it succesfully for pain > > management in here?. > > I've worked with several patients who have been put on it for pain > > control and the side effects seem to be less that the narcotic > based > > drugs. > > Apparently, the neurontin is actually an anti-spasmodic medication- > > which seems to be right up our alley when we're experiencing pain > > related to inflammation. > > Just wondering! > > Kirsten > > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). > > In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. > > Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. > > Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. > > Blessings and Peace, > > Atwood-Stack, Founder > Alan , Web & List Editor > Jack , Newsletter Editor > Pat Bias, List Editor > Ron Dotson, List Editor > and many others who help moderate (thank you!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Cheryl - when I complained about my feet burning and the pain, he sent me to a neurologist who did tests to see if there was any nerve damage. He had a long questionnaire and one of the questions dealt with drinking. He said this was neuropathy; not arthritis and deals with the nerves in my feet constricting to the point of not enough circulation and the death of those nerves. When I joined this group I was surprised to find arthritics taking neurontin for arthritis. Now that I know neurontin is prescribed for arthritis, I intend to increase my intake of it and see if it helps my arthritis also. Actually, my feet have been better since I stopped working until today. I just got back from a long shopping trip and could hardly drive home because I couldn't put my foot down on the gas pedal. My husband had to bring everything in and put it away and the pain in just now starting to subside after 1 1/2 hours. No gout. J [ ] Re: Neurontin > Hi - I take Neurontin for pain in my feet - I can't walk for very > long - maybe 30 minutes - Dr said it was because I drank a lot when I > was in my 20's. It has stopped the pain - I only take one of the > three per day because that works but go ahead and get the > prescription for 3 per day so if I need them I have them. > > lj > > > > Ron- > > So glad you mentioned neurontin in regards to the TMJ. > > I've been wondering if anyone here has used it succesfully for pain > > management in here?. > > I've worked with several patients who have been put on it for pain > > control and the side effects seem to be less that the narcotic > based > > drugs. > > Apparently, the neurontin is actually an anti-spasmodic medication- > > which seems to be right up our alley when we're experiencing pain > > related to inflammation. > > Just wondering! > > Kirsten > > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). > > In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. > > Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. > > Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. > > Blessings and Peace, > > Atwood-Stack, Founder > Alan , Web & List Editor > Jack , Newsletter Editor > Pat Bias, List Editor > Ron Dotson, List Editor > and many others who help moderate (thank you!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Alley, I have been on neurontin for about 4 weeks. The first 10 days I had virtually no headaches. Then they started coming back, very bad ones. I increased from 300 mg. twice a day to 300 three times, then 4 times. The headaches continue. I have other side effects, and tomorrow, I will start to wean myself of this drug. It doesn't seem to be helping. I think you are right. I read the articles. Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Yes it's prescribed for pain although in my case it didn't help much. Elavil is an anti-depressant that is prescribed for pain and it is effective in very low doses and very inexpensive (under 10.00 CND). You could ask the doctor to try that one as it will add to the anti- depressants you already have plus relieve pain. Two effects for the price of one drug. Anyway I found Elavil to be effective in my case. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 In a message dated 2/11/03 4:35:13 PM Central Standard Time, legerpj@... writes: > Yes it's prescribed for pain although in my case it didn't help much. > Elavil is an anti-depressant that is prescribed for pain and it is > effective in very low doses and very inexpensive (under 10.00 CND). > Anyway I found Elavil to be effective in my case. > > > I was prescribed Neurontin also and didn't find any relief on it either. I did find that the Elavil helped my pain level quite a bit--better than anything that I have ever tried. Has anyone else had problems with Elavil causing mood swings? I have been sooo moody and depressed since taking this drug. I am having issues at work because of the moodiness. I feel like I am having to choose pain relief for another set of problems. Has anyone else had this problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Bob, Can you tell me how you space out your neurontin doses throughout the day, and what dose you started with? At one point, I corresponded a one woman who had severe CFIDS, and had experienced a complete remission on Seastrunk's protocol after being on it for 2 years, so I'm still very interested in people's positive results. Can you elaborate on your experience with this protocol? Thanks. Peggy ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome: http://www.angelfire.com/ri/strickenbk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Dear Joalle, I have two friends who completely gave up their psych meds when they used my protocol. You can restore the proper cellular communication in the brain, and balance your entire system, from your immune system to nervous system. The toxemia caused by a malfunctioning liver is often mistreated with psych meds, which ultimately cause many more problems then they solve. You can eliminate the toxemia, and the brain fog, the depression, anxiety and mood swings by simply providing your body the right nutritional tools....and allow it to correct the conditions, and heal itself. If you read the contra-indications or safety precautions on your meds you will discover they are not safe at all, and may be doing your liver, and your entire body harm. There is no drug for which Nature cannot provide a better remedy. Peace, Jeanine http://hepchelp.homestead.com First they ignore you, then they laugh at you, then they fight you, then you win. Mahatma Ghandi _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 --- " sathomas55 " <sathomas55@y...> wrote: > Okay gang, tell me what you have experienced with this drug. > Thanks, Savannah The only thing I've found Neurontin useful for is a peculiar condition I sometimes get that I think is related to psoriasis. I should point out that my worst spot of psoriasis is on my right ankle, and pretty much covers my entire lower leg below the knee. While I was on Remicade, it turned out that for some reason when the Remicade started to wear off (about midway between infusions) I would experience the most intense itching of the Ps on my ankle that I have ever experienced. We've all experienced Ps itching, but this was on a whole new level - almost bordering on pain. It was so bad it would cause my right foot to tremble. It felt as though there was an electric wire running down through the center of my foot shocking me. The itching was literally irresistible and I scraped off so much of the skin that my whole ankle was blood red and bled. My rheumy prescribed Neurontin and a topical anesthetic for me. The topical anesthetic was worthless (that's how bad the itching was), but the Neurontin did help a bit. The next time I saw my dermatologist I described the condition to him and he prescribed a high-potency cortisone ointment called Ultravate. The Ultravate finally quieted down the itching, and I subsequently switched from Remicade to Humira. I also tried another somewhat related anti-convulsant called Topamax. It works pretty well - probably better than Neurontin to stop the nervous twitch related to psoriasis itching (and the itching itself) but the side effects are very unpleasant. The first time I took an entire 200 mg Topamax pill, I felt like I was being electrocuted - literally. It felt like my extremities were actually " buzzing. " Even worst, the effect lasted for several days, although the worst of it wore off in a couple of days. I would have been concerned except that the PDR says there is no known overdose of Topamax. Since then, I've tried breaking the Topamax pills up into approximately 50 mg pieces and taking those, and the undesirable side effect is lessened but still noticeable. I've since given up on Topamax altogether and now take a 300 mg Neurontin capsule in addition to the Ultravate ointment for itching whenever it gets bad. I haven't noticed any undesirable side effects of Neurontin at all. -- Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 In a message dated 4/6/2003 8:31:32 PM Eastern Daylight Time, salo99@... writes: > I've been taking Neurontin for about a month. I'm not sure it's all that > great for me. My regular doc asked me if it made me sleepy [maybe the > power of suggestion, but I think it may]. The neurologist said it is > " promising " for psoriasis & pa, but I am not sure. She suggested that I > stop taking it for a month & try it again to see if it makes a > difference...so that's what I'm doing. Sylvia [p.s. reg. doc said it's > for " nerve pain " neurologist says that's not the case] I was on neurontin for about a year. I have Restless Leg Syndrome and took 100 mg 3x a day for it. It helped, but the medication played havoc with my moods. I also have PMDD and get very very down for a couple of weeks a month. I found if I missed a dose of the Neurontin it made me very very crabby and my boss at work make comment about me being 'spacey'. *sigh* Off that and on simet now and *sigh* prozak to counteract what that does to my moods and buspar to counteract the shaking from the prozak. My dad is on about 1200 mg a day of Neurontin for pain...he has ostioarthrtis in his spine and it is helping with that. He doesn't seem to have the cranky or spacey effect that it had on me, but I do tend to be very sensitive to side effects from meds. Sorry about the lousy spelling...I'm dylexic. I try, but sometimes I even confuse the spell check. ;-) Smile, Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 I've been taking Neurontin for about a month. I'm not sure it's all that great for me. My regular doc asked me if it made me sleepy [maybe the power of suggestion, but I think it may]. The neurologist said it is " promising " for psoriasis & pa, but I am not sure. She suggested that I stop taking it for a month & try it again to see if it makes a difference...so that's what I'm doing. Sylvia [p.s. reg. doc said it's for " nerve pain " neurologist says that's not the case] Editor's Note: There is a good deal of debate, both among patients and medical professionals, regarding the uses for, and efficacy of, Neurontin (gabapentin). For those interested in learning more--from both pro, and con, points of view--please see message #27095 ( " Neurontin " ) and the appended Editor's Note and web link, and also Elfstrom's message (#27097, I believe) entitled " Good Medical Article about PA " . Personal opinion: This drug is not the one I'd start with for treating pain associated with PsA, but given its relatively innocuous side effect and interactions profiles, if my doc thought it worth trying, I'd probably give it a shot. However, the maker's alleged shenanigans in puffing up its off-label utility (in PsA and other conditions as well), make me uneasy about it. D.] ron_s_dotson <PA@...> wrote:--- " sathomas55 " <sathomas55@y...> wrote: > Okay gang, tell me what you have experienced with this drug. > Thanks, Savannah The only thing I've found Neurontin useful for is a peculiar condition I sometimes get that I think is related to psoriasis. I should point out that my worst spot of psoriasis is on my right ankle, and pretty much covers my entire lower leg below the knee. While I was on Remicade, it turned out that for some reason when the Remicade started to wear off (about midway between infusions) I would experience the most intense itching of the Ps on my ankle that I have ever experienced. We've all experienced Ps itching, but this was on a whole new level - almost bordering on pain. It was so bad it would cause my right foot to tremble. It felt as though there was an electric wire running down through the center of my foot shocking me. The itching was literally irresistible and I scraped off so much of the skin that my whole ankle was blood red and bled. My rheumy prescribed Neurontin and a topical anesthetic for me. The topical anesthetic was worthless (that's how bad the itching was), but the Neurontin did help a bit. The next time I saw my dermatologist I described the condition to him and he prescribed a high-potency cortisone ointment called Ultravate. The Ultravate finally quieted down the itching, and I subsequently switched from Remicade to Humira. I also tried another somewhat related anti-convulsant called Topamax. It works pretty well - probably better than Neurontin to stop the nervous twitch related to psoriasis itching (and the itching itself) but the side effects are very unpleasant. The first time I took an entire 200 mg Topamax pill, I felt like I was being electrocuted - literally. It felt like my extremities were actually " buzzing. " Even worst, the effect lasted for several days, although the worst of it wore off in a couple of days. I would have been concerned except that the PDR says there is no known overdose of Topamax. Since then, I've tried breaking the Topamax pills up into approximately 50 mg pieces and taking those, and the undesirable side effect is lessened but still noticeable. I've since given up on Topamax altogether and now take a 300 mg Neurontin capsule in addition to the Ultravate ointment for itching whenever it gets bad. I haven't noticed any undesirable side effects of Neurontin at all. -- Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 Savannah, I got put on neurontin once and it made me a total zombie! But everyone's different. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2003 Report Share Posted April 8, 2003 Becky, some of our greatest brains have been dyslexic...you don't confuse the rest of us. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 My daughter has been on 2400 mg. nightly for over a year. Her doctor says it is a very safe drug, not processed through the liver. She doesn't seem to have any side effects. Her MCS doesn't seem improved though. Beth Neurontin Has anyone ever used Neurontin? Would you be willing to tell me about your experience with it, particularly any side effects/adverse reactions you had? My doctor mentioned it to me as a possible treatment for my MCS. He's had great success with quite of few of his patients. Some are now leading normal lives. That would be wonderful if I could stop avoiding scented products and fragrances in public, but I am concerned about the side effects, which are many. (The other CFIDS stuff I can handle okay. The MCS has really curtailed my activities.) Thanks in advance. Teewinot @>--}-- * --{--<@ Teewinot13@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Hi Beth and All. Beth how has Neurontin helped your daughter, as you said that she has been on it for over a year and it has not helped her MCS? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Beth O'Donnell wrote: > My daughter has been on 2400 mg. nightly for over a year. Her doctor says it is a very safe drug, not processed through the liver. She doesn't seem to have any side effects. Her MCS doesn't seem improved > though. Thanks, Beth. Teewinot @>--}-- * --{--<@ Teewinot13@... Quote Link to comment Share on other sites More sharing options...
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