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Member
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Join Date: Dec 2006
Location: London, England
Posts: 145
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Member
Join Date: Dec 2006
Location: London, England
Posts: 145
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Neurontin for neuropathic pain – does it work? The answer for me and from what I have read and heard (even from my neuro) is: - only to a limited extent and for a limited period of time - and that’s if you’re lucky.
I commenced at 300mg 3 times a day way back in 1994. I then kept returning to my neuro requesting an increase - due to increased pain – on average every 4 to 6 months. I reached the maximum allowed in the UK which is 3600mg per day in about 1996. Due to the fact that Neurontin was no longer stopping my pain increasing I have tried Lyrica on 3 occasions. The most recent attempt was just a few days ago and each time the side effects were just too much. Last week I took just 4 X 50mg capsules and on waking my vision was blurred and remained so for about 5 hours.
I desperately wanted Lyrica to work because my pain has almost stopped me from walking or standing. If I did not have oxycodone to give me a little help I would be a wheelchair case. Withdrawal from Neurontin – unless one can tolerate Lyrica – is no go territory, especially for someone of my age (74).
I would advise anyone considering taking Neurontin for neuropathic pain to think hard and long before entering into what is virtually a lifelong addiction to a drug which at the best gives only short term relief before requiring titration and at the worst is totally useless.
I envy Bob and his success with his conversion to Lyrica and hope with all my heart that he and others who have done the same don’t eventually find they are having the same experience as I (and heaven only knows how many others) have had with Neurontin.
Once PN has become established with no obvious cause (idiopathic), one only has pain killers (mainly narcotics) to help get through each day. Even where one has been able to stave off the worst pain for a while with any form of exercise that can be tolerated, it will inevitably end in the taking of strong analgesics.
I have seen 3 neurologists over a period of 16 years since my PN commenced during which time I have read many books and spent hundreds of hours of research on the internet. I am sure many here have done the same. I have also spent several thousand pounds (2 dollars to the pound!!) on devices and supplements. None has been of any help with the pain. I can accept the overblown claims of the companies who make these devices and supply the “wonder” supplements but I cannot accept the overblown and in many cases false claims of so called reputable pharmaceutical companies. Neurontin is one of the worlds largest selling drugs and mostly for neuropathic pain. How do they go on getting away with it? This extract from Boston.com has the strongest ring of truth - quote: “Other documents show that Pfizer intensively promoted the drug for neuropathic pain, despite advice from the company's consultants that it didn't work and an opinion from the FDA that the agency would not approve the drug for that purpose without further evidence”.
I wonder just how many sufferers out there are slowly titrating their dosage with no knowledge that it will probably end in taking a massive dose, then after realising they can no longer get their doctor to increase the dose they are back exactly where they started. For those who experience long term placebo effect – and that is almost impossible to prove or disprove – I hope it will last forever for them, for they will never know.
Neurontin for neuropathic pain is in my opinion utter garbage and dangerous garbage at that. It would seem to me that early diagnosis is the only hope of putting a stop to years of suffering. The difficulty is that the average sufferer does nothing for too long right at the start when symptoms are often slight and doctors – if consulted at all – are very reluctant to send the patient for all the necessary tests required in order to find out whether the patient’s “weird” descriptions are real or just imaginary. I had a great problem in convincing the doctors and neuros that I was genuine at the beginning of all this.
One of the most frustrating things now is that my neuro would be more than willing to give me a prescription for Sativex – a derivative of cannabis if only I had MS. It is known to help relieve pain in some sufferers. He also understands that Neurontin is now quite useless and the problems I would face regarding withdrawal. One final worry is that with the world in financial free fall will the drug companies cut back their limited research on neuropathic pain or on the other hand does it really matter, bearing in mind PN is little spoken of in the wider world? These 2 facts have surely brought about the lack of effective drugs for PN available in the 21st century.
Please everyone give much thought before embarking upon treatment with Neurontin.
You might end up like me.
Tony
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