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UK Government to reclassify pregabalin and gabapentin after rise in deaths

We at Pain Concern wish to address the recent articles published in Pulse Today titled ‘Pregabalin and gabapentin set to become controlled drugs’ on the 21st September, and the British Medical Journal (BMJ) on the 25th September 2017 titled ‘UK government to reclassify pregabalin and gabapentin after rise in deaths.’

The terms dependence and addiction are used as if interchangeable; they are not. With regards to deaths associated with these drugs it is entirely unclear whether these are due to taking as prescribed, taking at doses higher than prescribed, taken with other (potentially addictive drugs such as opioids) – and therefore, abuse – or taken in increasing doses alone or in combination with recreational drugs and/or alcohol.

We note with concern a rise in the number of deaths associated with the ingestion of pregabin and gabapentin. It is unclear what proportion of these were in people taking these drugs as prescribed or abusing the drugs by taking excessively large doses, or in combination with other prescribed or recreational drugs or alcohol. We support open and informed discussion between patients and their prescribers about the likely benefits of treatment and potential adverse effects, including the risks of dependency, addiction and interactions with other drugs.

We recognise that a significant number of people do not derive benefit from these drugs even when prescribed appropriately for nerve pain, and would encourage them to consult with their GP about alternative ways of controlling their pain. We share the concerns of those who are deriving significant benefit from these drugs: that it will prove more difficult to get them when they are reclassified as Controlled Substances.

Pain Concern is committed to the dissemination of accurate and clinician approved information regarding the treatment of chronic pain directly to the patients themselves. This includes information on the use and misuse of prescription drugs. As such, we feel the need to address this issue in the strongest possible terms.

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Can’t say I am surprised that the classification of Gabapentin has been changed. Was prescribed by Pain clinic some years ago for neuropathic pain with amitryptiline. Took some time to tolerate effects from Gabapentin. Ami not so bad. Decided earlier this year that I had enough of feeling dazed all the time. GP didn’t like them at all. So reduced dose slowly. But withdrawal symptoms are awful. Sweating and sleeplessness bad for over a month. Three months down the line I feel clearheaded again. Unfortunately pain levels are bad. Use tramadol with paracetamol. Naproxen and amitryptiline at night. Don’t want to take them again.. Gabapentin I mean. But GP doesn’t like to prescribe tramadol which I was taking with Oromorph…which works well to keep pain levels down with few side effects. Anti depressants no good… Feel too sedated with them but pain still there. I had heard a couple of years ago that there is a market for Gabapentin for recreational use. They must be nuts. But it is unfair for any health professional to refuse to prescribe any of these meds because a few people misuse them. Many people would love to not need pain relief…its not a choice you make to have ongoing severe pain. I’ve tried on meds and its not good to feel so much pain all the time. CBT etc etc etc do have a place but it isn’t always the answer.

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I have trigeminal neuralgia, also known as The Suicide Disease. In my view, it is not a disease, but a condition, one that dominates life, despite the patient’s awareness that they are not ill, but in pain, excruciating pain. Currently, I am on gabapentin, and allowed to self-titrate within limits, maximum being 3600 mg per day. I have never had to go that high. The accepted drug for this condition is not gabapentin. I have tried the alternative, but it causes severe headache, nausea, detachedness, whilst having no effect whatever on the pain. What will patients such as I do if this drug goes to class 3? It will condemn me to a lifetime of the most severe pain imaginable. Trigem cannot be cured, although there are some procedures that help some but not all sufferers. It is far from clear whether a procedure (brain surgery) will help me, or anyone else.

Even during spells of remission, trigeminal neuralgia stalks silently after every patient who lives with persistent vigilance against triggers and the terror this disgusting condition will return.

It is unrelenting and in my case the only relief I have is with gabapentin, which has no effect on my mood, apart from gratitude. I certainly don’t feel “high” or even odd.

I beg beg this consultation falls through.

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I was taking Gabapentin for a few years. I attended the Pain Clinic looking for alternatives, eg. Acupuncture, Tens, etc but the Consultant at the Pain Clinic told me to just stop taking everything. As well as Gabapentin (600mg x 3 per day) I was taking Amitriptyline 100mg, Lodine, Paracetamol & also on Buprenorphine patches. I was horrified as I knew you shouldn’t just stop your medication. He insisted that I should see a physiotherapist (for breathing exercises, pacing & Mindfulness) and he wrote to my doctor. The outcome of stopping the Gabapentin caused me so many withdrawal symptoms. I felt as though I had a bad case of flu which felt as though it would never end. Luckily I had enough patches to taper down but I would never wish to repeat that!
I did have to leave the pain clinic eventually after asking if I could have Acupuncture etc. but was told I wasn’t taking this seriously and I should go home and read my Mindfulness notes.
Anyway, I saw my Rheumatologist last week and he asked me why I’d stopped the Gabapentin. When I told him, he represcribed them. I thought they’d been asked to stop prescribing it so I was surprised. I’m just waiting for my gp practice to refuse!
I’m really happy for the people that find that Mindfulness helps their pain but I’m afraid that no amount of it helped me.
As has already been said, why should so many people be denied Pregabalin & Gabapentin when they need them, just because a few people abuse them?

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I was yelled at by my GP when I told her I re-started my Pregabalin. Now, of course 111 people died from this medication, of course if you combine coke and lyrica you will die…from the cocaine !
I have zero interest in taking narcotics and am happy to stay on Ami which caused me severe neurological fatigue when stopped for a year, but at least when I am on it …it’s actually amitriptyline that I find addictive, I was able to withdraw very easily from Pregab in the past, which is a miracle pill for nerve pain anyway …
Mindfulness helps the medication work faster, that is true, but who can stay “mindful” with daily stressors anyway ? It is not powerful enough to warrant discontinuation of treatment.
We pay so much tax and we have zero in return, apart from incompetence and disastrous chaotic political decisions

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I have servere spinal stenosis at c5 c6 and at l4 and ive been complaining of pain for years and its only after complaining to nhs england did my gp arrange for a mri…the gp after a lot of hassle agreed to prescribe diazepam and tramadol…ive seen doctors privately who suggested noritritipline and then if that doesnt do the trick then pregablin. My cousin sister is a doctor abroad and she suggests gabapentin to be most effective. I just find it so much hassle to get my gp to prescribe anything but naproxen. The diazepam doesnt help much and the tramadol started to beome less effective at 100 mg. i currently take noritriptiline 25mg at night. It makes me feel paranoid.

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