Came across NHS National Institute for Health and Clinical Excellence data about neuropathic pain and prescriptions. It seems that oral amitriptyline and more importantly pregabalin should be prescribed in first line of treatment, see page 3. http://www.nice.org.uk/nicemedia/live/1 ... /47936.pdf
There is a follow up saying. . . . Neuropathic pain: the pharmacological management of neuropathic pain in adults in non-specialist settings
Description
NICE is aware that there have been concerns about the associated costs that pregabalin may bring to the NHS as one of the first line treatment options for adults with neuropathic pain. NICE, in collaboration with the Health Technology Assessment group are reviewing the economic modelling. Until a further announcement is made, the guideline continues to represent best practice for the NHS.
This clinical guideline updates and replaces the following recommendations on the drug treatment of painful diabetic neuropathy in previous NICE clinical guidelines:
read more http://guidance.nice.org.uk/CG96
Here is the cost implications http://www.nice.org.uk/nicemedia/live/1 ... /48032.pdf which says the cost for 28 days of
prescribing ranges from an estimated £0.84 for amitriptyline to £64.40 for pregabalin. WOW!
To me this means we should be prescribed pregabalin if necessary.
Pregabalin prescription?
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helenlegs 11
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Re: Pregabalin prescription?
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pregabalin prescription?
Helen, that is brilliant - one to print out, definitely.
I must admit, I had the impression that pregabalin was a lot more expensive than that. I shall no longer feel guilty about the cost to my GP practice! And I can see that amitriptyline is indeed 'cheap as chips'.....
Does this means that there is any hope of persuading your GP to give you some pregabalin? For me, the advantage of this over gabapentin has been less side effects overall than with gabapentin, and a faster dose titration - although I don't think the overall pain relief is very different.
I must admit, I had the impression that pregabalin was a lot more expensive than that. I shall no longer feel guilty about the cost to my GP practice! And I can see that amitriptyline is indeed 'cheap as chips'.....
Does this means that there is any hope of persuading your GP to give you some pregabalin? For me, the advantage of this over gabapentin has been less side effects overall than with gabapentin, and a faster dose titration - although I don't think the overall pain relief is very different.
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helenlegs 11
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Re: Pregabalin prescription?
Well, I did get used to the 'feeling thick' with gabapentin and it did work(ish) especially with normal (not nerve) pain, but I had the worst with drawl from it which I would not wish to repeat, so pregabalin is my only option now. I thought I was heading towards decompression surgery but if you have read my other post under 'One Too Many' by little mo, that seems to be a distant wish. Thinking about hitting the bottle 
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pregabalin prescription?
There must be a route forward. There has to be.
Ok - it is two things really, short term and long term. Pain relief, so that you don't end up with that condition where the pain continues, I can't remember the name - and surgery to give you the best chance of recovery. Who was Dr G thinking of referring you to, do you know?
Have you thought of seeing another GP? And what about trying to see a neurologist locally? - or as locally as can be managed? - your pain is neuropathic, and a neurologist would surely recommend pregabalin and referral to an appropriate specialist, ie Dr G.
You know this is worse than the postcode lottery thing. I am going out of area to see Dr G and Mr Dixon - it is only because it is quite close that it doesn't seem such a big deal. My GP didn't turn a hair when I said I would like to see a specialist in Bristol - I wonder if I had said I wanted to see a specialist in Newcastle, would his reaction have been the same, even though the cost would have been the same.
It would cost such a lot of money to see Dr G privately - and the cost of private surgery just doesn't bear thinking about.
And I meant it about the spare room, I know it isn't sensible because of the flights etc but I did mean it - if you do come down to see Dr G again then you are welcome to stay if it helps at all, we are 30 - 40 minutes drive from Frenchay if the traffic behaves itself.
Ok - it is two things really, short term and long term. Pain relief, so that you don't end up with that condition where the pain continues, I can't remember the name - and surgery to give you the best chance of recovery. Who was Dr G thinking of referring you to, do you know?
Have you thought of seeing another GP? And what about trying to see a neurologist locally? - or as locally as can be managed? - your pain is neuropathic, and a neurologist would surely recommend pregabalin and referral to an appropriate specialist, ie Dr G.
You know this is worse than the postcode lottery thing. I am going out of area to see Dr G and Mr Dixon - it is only because it is quite close that it doesn't seem such a big deal. My GP didn't turn a hair when I said I would like to see a specialist in Bristol - I wonder if I had said I wanted to see a specialist in Newcastle, would his reaction have been the same, even though the cost would have been the same.
It would cost such a lot of money to see Dr G privately - and the cost of private surgery just doesn't bear thinking about.
And I meant it about the spare room, I know it isn't sensible because of the flights etc but I did mean it - if you do come down to see Dr G again then you are welcome to stay if it helps at all, we are 30 - 40 minutes drive from Frenchay if the traffic behaves itself.
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helenlegs 11
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Re: Pregabalin prescription?
Thanks Calluna,
I'm so thankful for you help and excellent sugestions. I will try the neurologist route, sounds very sensible.
I have been waiting for a letter from the PCT saying why the referral was refused, but nothing has arrived, just the letter from Dr G. The letter would help and then I would be able to appeal against their reasons. Again, UGH!
He did suggest (if I could get funding) to see a Dr Natasha Curran at the National Hospital in Queens Square, he recommended her as an 'expert in pudendal pain' so at least there is another name for our Dr. list
Can't see it doing me any good,if they won't fund a referral to Bristol why would they fund anywhere else??
All is not lost though as I was refused in the beginning last time and got that overturned. More battling! It's just so important though, especially when reading about Paulette's nerve damage, the longer it's left . . . .
At the end of his letter he said, 'I very much regret having to give you this information but my hands are tied'. He is such a considerate person.
I will find the route forward, I will have to get a bit more forceful, I can do it fine for others, so I will have to get used to doing it for myself now.
Anyway thanks for the spare room offer, too kind, you are the best!
Most of all good luck for Tuesday, probably best not to think about it, if that's possible and just try and keep your mind occupied.
Take care x
I'm so thankful for you help and excellent sugestions. I will try the neurologist route, sounds very sensible.
I have been waiting for a letter from the PCT saying why the referral was refused, but nothing has arrived, just the letter from Dr G. The letter would help and then I would be able to appeal against their reasons. Again, UGH!
He did suggest (if I could get funding) to see a Dr Natasha Curran at the National Hospital in Queens Square, he recommended her as an 'expert in pudendal pain' so at least there is another name for our Dr. list
Can't see it doing me any good,if they won't fund a referral to Bristol why would they fund anywhere else??All is not lost though as I was refused in the beginning last time and got that overturned. More battling! It's just so important though, especially when reading about Paulette's nerve damage, the longer it's left . . . .
At the end of his letter he said, 'I very much regret having to give you this information but my hands are tied'. He is such a considerate person.
I will find the route forward, I will have to get a bit more forceful, I can do it fine for others, so I will have to get used to doing it for myself now.
Anyway thanks for the spare room offer, too kind, you are the best!
Most of all good luck for Tuesday, probably best not to think about it, if that's possible and just try and keep your mind occupied.
Take care x
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pregabalin prescription?
Take that letter from Dr G with you on Monday! And the NICE guidelines, and the costing statement....
And if he is recommending Dr Curran, then I'm sure she'll be good. She's a consultant in Anaesthesia and Pain Management.
Re Tuesday, I am just not thinking about it, or trying not to, at any rate. Today we are off to visit the in-laws....
And if he is recommending Dr Curran, then I'm sure she'll be good. She's a consultant in Anaesthesia and Pain Management.
Re Tuesday, I am just not thinking about it, or trying not to, at any rate. Today we are off to visit the in-laws....
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helenlegs 11
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- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Pregabalin prescription?
I am the proud owner of one months prescription of pregabalin/lyrica.
This was the third try from my GP, over several months. I took the neuropathic pain pathway NHS guidelines (printed out) along to her, she still was having non of it as I had complained about the with drawl symptoms from gabapentin.She said that wouldn't be any different with pregabalin and would still not prescribe it.
I then said that I'd had the 'stupidity' side effect too, and that did it!
So the moral of the NHS story is; you may have to go down the gabapemtin route and indeed that may suite you BUT even if they say no to pregabalin, produce http://www.nice.org.uk/nicemedia/live/1 ... /47936.pdf and say what side effects have stopped you from taking gabapentin.
First day, but all seems a little better so far.
This was the third try from my GP, over several months. I took the neuropathic pain pathway NHS guidelines (printed out) along to her, she still was having non of it as I had complained about the with drawl symptoms from gabapentin.She said that wouldn't be any different with pregabalin and would still not prescribe it.
I then said that I'd had the 'stupidity' side effect too, and that did it!
So the moral of the NHS story is; you may have to go down the gabapemtin route and indeed that may suite you BUT even if they say no to pregabalin, produce http://www.nice.org.uk/nicemedia/live/1 ... /47936.pdf and say what side effects have stopped you from taking gabapentin.
First day, but all seems a little better so far.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pregabalin prescription?
Oh well done Helen! I was thinking about you and wondering how you got on today. (By the way, that link isn't working at the moment, but this one seems ok.)
What dose are you on? And are you going to see Dr Curran?
I do hope the pregabalin helps, it is magic stuff as far as I am concerned. Once you get past being spaced out, that is.
What dose are you on? And are you going to see Dr Curran?
I do hope the pregabalin helps, it is magic stuff as far as I am concerned. Once you get past being spaced out, that is.
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helenlegs 11
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- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Pregabalin prescription?
It's 50mg 3x per day. Still don't know what is going to happen with regard to any referral. The whole thing is very odd! I rang my PCT's head office and they say that I have never ever been granted the referral in the first place?? I have been seeing Mr Greenslade for nearly a year on the NHS and I have no clue who is picking up the bill. As long as it's not me .
I will ring them back tomorrow and see if they have any answers for me. I do think that I will be able to get the referral granted, I can't see how they can stop treatment half way through, especially when the botox did help a bit.
Anyway, what's happening to me is just small potatoes Calluna, I know I've said it in another post but I will be thinking about you tomorrow and send all of my best wishes your way.
xxxxxx H
. I will ring them back tomorrow and see if they have any answers for me. I do think that I will be able to get the referral granted, I can't see how they can stop treatment half way through, especially when the botox did help a bit.
Anyway, what's happening to me is just small potatoes Calluna, I know I've said it in another post but I will be thinking about you tomorrow and send all of my best wishes your way.
xxxxxx H
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pregabalin prescription?
Just looking in to check the traffic flow on the motorway, and I thought I'd just look in here too, as you do....
I bet that's making you a bit sleepy and spaced, starting at 150. I started with a big pack of 25mg capsules, was told to start off with one twice a day and it has gone on from there. Saw my GP yesterday, he says I can take it up to 300mg if I need to, dose is up to me - which is very nice of him! I took it up to 250mg yesterday. Three times a day - I think it is usually twice a day, but what the heck. Very glad you've got this stuff now, Helen - that really was excellent news.
Right, I am off!
I bet that's making you a bit sleepy and spaced, starting at 150. I started with a big pack of 25mg capsules, was told to start off with one twice a day and it has gone on from there. Saw my GP yesterday, he says I can take it up to 300mg if I need to, dose is up to me - which is very nice of him! I took it up to 250mg yesterday. Three times a day - I think it is usually twice a day, but what the heck. Very glad you've got this stuff now, Helen - that really was excellent news.
Right, I am off!