Neurontin

Botox, neurontin etc
save_me
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Neurontin

Post by save_me »

I've been trying to find a study to see if Neurontin is effective in treating this problem. Haven't seen one. Anyone helped by this drug? Hurt by it?

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Age: 26 | Onset Age: 25 | Symptoms: Current--Perenial Tightness and dull pains, occasional nerve sensitivities, minor frequency, and some stress. Initial--Urinary Frequency (~12 times per day), Urgency, Nocturia, Back Pain, Penis Tip Pain, Stress Overload | Helped By: Mild Exercise, Yoga, Physical Therapy, A glass or two of alcohol | Worsened By: Ativan (just don't take it), Binge Drinking, Stress, Sitting, Cold Medicine
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Richie
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Post by Richie »

Age: 44 | Symptoms: Pain in pelvis, Post urination drip. Helped by: Squat stretching, PT, Prelief before banned foods, Vit B, Cystoprotec AFTER foods, singulair after foods, Exercise. Makes worse: Stress, Alcohol (1-2 days after), coffee, Artificial sweeteners, chocolate, tonic Wheat/gluten. Drink a lot of water!!! 95% better to date!
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MB
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Post by MB »

Neurontin is a hit or miss depending on individuals. It is worth a try. It makes you like a zombie and you easily gain weight on it. Lyrica, which is marketed as Neurontin's replacement, has a bit less side effects.
Age:46 | Onset Age: 43 | Symptoms: Burning | Helped By: Sleep/Ultram | Worsened By: As the day goes by
londoner
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Post by londoner »

Richie's right - there ARE a lot of postings on Neurontin. Though, I can't add anything particularly new, I'll just outline my experience.

I started taking Neurontin about 2 yrs ago. Reading the contraindications on the packet I was forewarned that it could provoke the user into uncharacteristic or irrational behaviour. Undeterred, I decided to try the drug and an hour or so later I found myself in my boss's office having a massive - and uncharacteristic - row! Half way through my rant I managed to get a chink of clarity and explained to him that I was on some new painkiller. That was not so positive - so watch out for it.

However, later that day I was standing outside a pub with friends enjoying a drink and, for the first time in 2 years, I felt 'normal'. No pain, no sensation of discomfort or something being 'wrong' down there. I'd almost forgotten what that was like. It was amazing - and, of course, it didn't last. But I've used Neurontin, on and off, ever since. I can remember times where I had a really nasty flare-up and an hour after taking the Neurontin, I can feel the pain just melting away.

The uncharacteristic behaviour disappeared (I like to think) - though some people do have an intolerance to the drug or get other side-effects. On balance I'd definitely give it a try - it won't cure you but it may ease your symptoms.
Age: 44 | Onset Age:41 | Symptoms: abdominal pain and discomfort, urinary frequency, low libido | Helped By: quercetin, diazepam, neurontin, Elavil | Worsened By: sex, alcohol, caffeine
GP2
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Post by GP2 »

Londoner,

Can I ask how you are getting on with your PT (the lady with the AHIP on her desk if I remember rightly)?

P.S. Off down your way in a few weeks. Always like a few beers in London!

Thanks,

Greg in Brum
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better
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Post by Howden »

I have been using Neurontin on a daily basis for about 3 years. I was titrated up, without effect, untill I reached 900 mgs. 3 times a day. At that dosage Neurontin just took the edge off my pain, but that was enough to keep me using it. The only side effects I have experienced are those you are warned about: somnolence (though, if I keep busy that isn't a problem, and weight gain). My doctor has just prescribed Lyrica as a substitute. Incidentally, he is a neurologist and head of a pain clinic. He commented that he has had some good results with Lyrica and two 'astounding' results in men with CPPS. I will not start taking Lyrica for about 3 weeks, but I will keep you posted.
Age: 71; age at onset: 65; symptoms: initially rectal spasms; currently anal pain, pereneal pain, buttock pain; all pain on the right side; early diagnosis: chronic non bacterial prostatitis; treatments 4 long courses of antibiotics, accupuncture, naturopathy; current treatments: gabapentin, terasozin, Celeza, PT.
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Post by Howden »

I have just finished titrating down the Neurontin dosage to the point where, in the next couple of days, I will be using Lyrica at 150 mgs. twice a day without the benefit of Neurontin. I believe that is the maximum dosage for Lyrica. The net result so far is a decrease in the sleepiness, but no increase in the relief of pain. I fact, I have had a flareup starting about a week ago. Better today.
Age: 71; age at onset: 65; symptoms: initially rectal spasms; currently anal pain, pereneal pain, buttock pain; all pain on the right side; early diagnosis: chronic non bacterial prostatitis; treatments 4 long courses of antibiotics, accupuncture, naturopathy; current treatments: gabapentin, terasozin, Celeza, PT.
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Post by carld »

I do know that my Urologist is conducting a study with Lyrica in Los Angeles as part of the Prostatitis collaborative research network I think that's what it's called. Next time I speak with him I can ask how the study is going. :smile:
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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Post by londoner »

Does anyone know if the Neurontin weight-gain effect happens even at lower doses? And does Lyrica have the same effect?

Thanks!
Age: 44 | Onset Age:41 | Symptoms: abdominal pain and discomfort, urinary frequency, low libido | Helped By: quercetin, diazepam, neurontin, Elavil | Worsened By: sex, alcohol, caffeine
DavidinLA
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Post by DavidinLA »

carld wrote:I do know that my Urologist is conducting a study with Lyrica in Los Angeles as part of the Prostatitis collaborative research network I think that's what it's called. Next time I speak with him I can ask how the study is going.
I'm about four weeks into this study at UCLA. I still can't say for sure if I am on the real drug or the placebo. However, my symptoms seem to be more quiet lately. I'll know more later.
Age: 39; | Onset Age: 34; | Symptoms: pain in the glans, rectal pain (seldom), intermitent ED; | Helped By: relaxing, rest; | Worsened By: Spicy food, stress, fatigue
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Post by Howden »

Some general observations about Lyrica. I have now titrated the Neurontin down and I am off it. I am using Lyrica at 150 mgs twice daily. My pain is definitely less than it was and I think it is attributable to Lyrica. I say "I think" because my urologist recently found an increase in the number of white cells, and some clumping of them in my EPF, so he put me on Mobicox in the belief that there has been an increase in prostate inflammation. Neither NSAIDS nor Cox-2 specific inhibitors have previously had any effect on my pain so, as I say, I am inclined to think the Lyrica is having some effect. I think I am past the placebo effect, and I still have a long way to go, but I am quite hopeful.
Age: 71; age at onset: 65; symptoms: initially rectal spasms; currently anal pain, pereneal pain, buttock pain; all pain on the right side; early diagnosis: chronic non bacterial prostatitis; treatments 4 long courses of antibiotics, accupuncture, naturopathy; current treatments: gabapentin, terasozin, Celeza, PT.
ZR
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Post by ZR »

I started taking Neurontin about 2 1/2 years ago and started taking 900 mg per day for about 6 months but for the last 2 years I have been taking 1,100mgs per day. I have not noticed the symptom of weight gain that many have been saying their experience with the drug has been. Also I to have had two different doctors tell me about replacing the Neurontin with Lyrica and both have given me a couple of boxs of sample packs of Lyrica to try but I have yet to try it because I know the insurance that I am on will not pay for the Lyrica because it does not have a generic form and only medications that have a generic form is covered by my insurance.
I have also started to question lately that I have been on the Neurontin for too long now since it has been 2 1/2 yrs now has anyone else had the same questions that have been on Neurontin for several years now?

THANKS
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Howden
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Post by Howden »

ZR. I've asked myself some questions about the duration of my Neurontin therapy, but I have not had any increased side effects in the years I have been taking it. At least for me, high doses of Neurontin for a long time have been acceptably benign. But everybody responds differently to different drugs. Your doctor is the person to answer your concerns. I have experienced weight gain and I don't like that. I'm hoping the Lyrica will not have the same effect. Yes, Lyrica is expensive; very expensive. I'm lucky enough to have insurance to cover the cost and if I didn't I would be reluctant to start on it too.
Age: 71; age at onset: 65; symptoms: initially rectal spasms; currently anal pain, pereneal pain, buttock pain; all pain on the right side; early diagnosis: chronic non bacterial prostatitis; treatments 4 long courses of antibiotics, accupuncture, naturopathy; current treatments: gabapentin, terasozin, Celeza, PT.
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Post by DavidinLA »

Howden wrote:Yes, Lyrica is expensive; very expensive. I'm lucky enough to have insurance to cover the cost and if I didn't I would be reluctant to start on it too.
I just checked a couple of pharmacy web sites and Lyrica (pregabalin) goes for around $300.00 for a one-month supply. Unbelievable!

According to what I have been told by those conducting the study, when I finish the six-week trial at UCLA they will give me the option of extending the study for another six weeks in an unblind trial (they will be giving me the real drug). Knowing how expensive this drug is, I think I'll except that offer so that I can (at no cost) get a real good idea if this drug helps.
Age: 39; | Onset Age: 34; | Symptoms: pain in the glans, rectal pain (seldom), intermitent ED; | Helped By: relaxing, rest; | Worsened By: Spicy food, stress, fatigue
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Post by kenn101 »

I am on 1600mg twice daily so 3200mg a day. I have weight gain and have not been able to reduce my weight in the 1 1/2 year since I have been on the Neurontin therapy. I reduced the dosage in October and found that the pain was much worse on 1600mg per day. I also noticed anger problems since I have been using Neurontin but I also have not been able to work for over 2 years so that could be part or all the reason. I would like to know how many others have mood swings or angry problems since starting a Neurontin therapy. I would not be able to change to Lyrica because of the cost.
I HAVE NO MEDICAL TRAINING JUST CPPS

Age:48 | Onset Age: 39 | Symptoms:mod to extreme Pain in testicle (both), right epididymis, lower back lower right and centre abdomen. Urination frequency and urgence, decreased or no urine stream, ED, night time incontinence after riding in a vehicles or too much movement. | Helped By: eating ice frequency by Elavil, urine stream by Hytrin or Flomax. Pain control Methadone and Hydromorphone but more so by Triamcinolone epidurals. | Worsened By: Too much movement, SSRI's, Hot baths or showers. eating warm or too much food,DMSO treatments. Frequency by caffeine, stress or SSRI's.